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Your Guide to Consumer Information

FREE June 2011 • Volume 9 Number 6

Podiatry Kenneth Ammons, DPM

Rare-disease research Sen. Al Franken

Neurology Special Focus


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4 7 8

JUNE 2011 • Volume 9 Number 6





By John R. Finnegan Jr., PhD


PERSPECTIVE Matt Schafer Minnesota Patient Advocacy Coalition

18 20

CALENDAR Dystonia Awareness Week

T H I R T Y- S I X T H


SPECIAL FOCUS: NEUROLOGY Multiple sclerosis By Randall T. Schapiro, MD, FAAN


10 QUESTIONS Kenneth G. Ammons, DPM HealthEast

12 14

RESEARCH Fighting rare diseases By Sen. Al Franken

22 26 28 32

TAKE CARE Can arm-cycling reduce leg pain?

Stroke By Matthew Ostrander, MD

Young-onset Alzheimer’s disease By Terry R. Barclay, PhD

PEDIATRICS Pain and palliative care for children

Accountable Care Organizations

By Stefan J. Friedrichsdorf, MD

Accountable to Whom?

COMMUNITY HEALTH Take charge, live well

Thursday, October 13, 2011

By Pamela Van Zyl York, MPH, PhD, RD, LN

By Diane Treat-Jacobson, PhD, RN PUBLISHER Mike Starnes EDITOR Donna Ahrens

1:00 – 4:00 PM • Duluth Room Downtown Mpls. Hilton and Towers

Background and focus: Created as part of national health care reform, accountable care organizations (ACOs) are now part of every health care policy discussion. As defined by the 111th Congress, ACOs are organizations that include physicians, hospitals, and other health care organizations with the legal structure to receive and distribute payments to participating physicians and hospitals to provide care coordination, invest in infrastructure and redesign care processes, and reward high-quality and efficient services.

Exactly what this means is unclear, and a confusing array of levels and qualifications for ACOs has been proposed. With 2012 as a start date for Medicare reimbursement through ACOs, Congress is developing firm definitions at this time. Some say ACOs turn physicians into insurance companies; others say they are a way for physicians to take a leadership role in fixing a broken system. As health care organizations race to join, create, or redefine themselves as ACOs, they all face more questions than answers. Objectives: We will review the history, goals, and rationale behind the ACO model. We will review the latest federal guidelines defining what an ACO can be. We will discuss how the ACO will affect health insurance companies, employers, and the pharmaceutical industry. We will illustrate what must not be allowed to happen if the model is expected to succeed. We will examine who decides if ACOs are successful and how those decisions will be made. We will explore why so many people, representing very different perspectives on health care, are opposed to the idea and what can be done for it to achieve its best potential.


Please send me tickets at $95.00 per ticket. Mail orders to Minnesota Physician Publishing, 2812 East 26th Street, Minneapolis, MN 55406. Tickets may also be ordered by phone (612) 728-8600 or fax (612) 728-8601. Name Company Address

Advisory Board: Minnesota Medical Association (MMA), Minnesota Hospital Association (MHA), Minnesota Medical Group Management Association (MMGMA), Buyers Health Care Action Group (BHCAG), Minnesota Business Partnership (MBP), Minnesota Healthcare Network (MHN), Advocates for Marketplace Options for Mainstreet (AMOM), Minnesota HomeCare Association (MHCA), Minnesota Physician-Patient Alliance (MPPA), Physicians Service Network (PSN), Minnesota Center for Rural Health, and Minnesota Council of Health Plans.

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Minnesota Health Care News is published once a month by Minnesota Physician Publishing, Inc. Our address is 2812 East 26th Street, Minneapolis, MN 55406; phone (612) 728-8600; fax (612) 728-8601; e-mail We welcome the submission of manuscripts and letters for possible publication. All views and opinions expressed by authors of published articles are solely those of the authors and do not necessarily represent or express the views of Minnesota Physician Publishing, Inc., or this publication. The contents herein are believed accurate but are not intended to replace medical, legal, tax, business, or other professional advice and counsel. No part of this publication may be reprinted or reproduced without written permission of the publisher. Annual subscriptions (12 copies) are $36.00. Individual copies are $4.00.

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Program Aspires To Reduce Stigma Of Mental Illness Two health organizations have launched a program to fight the stigma of mental illness in the hospital setting. The National Alliance on Mental Illness (NAMI) Minnesota and HealthPartners will work together to change the hospital environment for patients with mental illness and make the inpatient experience more positive for patients, as well as for their families and friends. Sue Abderholden, executive director of NAMI Minnesota, notes that the stigma against mental illness can seem an overwhelming problem, but focusing on a patient’s hospital experience can be a good place to start changing attitudes. “People have been doing anti-stigma campaigns for years,” she says. “While we’ve made some progress, I think we need to start at the beginning, with people’s experiences.”


Traditionally, Abderholden says, the hospital experience for mental patients has been more difficult than it has to be. Limits on visiting hours, lack of empathy, and different rules for mental patients as opposed to other medical patients all wear on patients and families. “What we see is that when people enter the mental health system is when they feel most stigmatized,” Abderholden says. “If we can change how people feel about their first inpatient [experience] … then that might be one way to start breaking that down.” Under the new partnership, HealthPartners will give NAMI a $100,000 grant to fund a full-time position and develop several strategies to reduce the stigma of mental illness in a hospital setting. One of the goals is to make family and friends feel welcome to visit patients with mental illnesses. The program will start at Regions Hospital in St. Paul, but NAMI hopes to expand it to other


East Metro hospitals and eventually throughout the state. According to Abderholden, the campaign could be compared to how patients’ experiences in maternity wards have changed over time. “They were sterile, it was really medicalized; and then everyone decided to make it a much nicer experience. You could bring in family and friends,” she says. “In a way, that’s what we’re trying to do here. We’re really trying to change what it looks like to be in an inpatient psychiatric unit, and what it feels like.”

Parents Making Poor Health Choices, Researchers Find A recent University of Minnesota study found that being a parent can lead to unhealthy choices. Researchers led by Jerica Berge, PhD, of the University of Minnesota Medical School, found young adult mothers had higher body mass index (BMI) and poor dietary intake compared to young

adult women without children. Young mothers also reported having a higher daily intake of sugarsweetened drinks, total calories, and saturated fats, compared to young women without children. Both mothers and fathers participated in less physical activity than nonparents, but no difference was found in BMIs between fathers and men without children, the researcher say. “We don’t want to blame parents, we want to support them,” says Berge. “This study demonstrates the need to support and encourage mothers and fathers on their quest to remain healthy while balancing parenting demands and other life stressors.” Researchers say children are likely to mimic the health choices made by their parents, so these findings are significant for their impact on children as well. Berge says there are a number of steps parents can take to improve their health and nutrition choices. Parents should not feel obligated to finish food that children leave on the plate, she says.

To avoid wasting food, refrigerate it and save it for later. Parents should also avoid buying sugary, high-calorie beverages marketed toward children. And Berge recommends more walking and activity for families, rather than sitting in front of the TV after dinner.

Physician Practices Pack Economic Punch, Report Says A new report from the American Medical Association and the Minnesota Medical Association (MMA) finds that physician practices contributed $16.3 billion to the state’s economy in 2009. The report looked at the economic impact of office-based physicians. MMA officials say that category consists of clinic physicians and excludes those who are not in active practices, are primarily researchers, or are full-time hospitalists. According to the report, in 2009 Minnesota had 11,688 officebased physicians, accounting for approximately 84 percent of actively practicing physicians in the state. These practices supported 67,483 jobs, based on the total of direct and indirect positions. On average, the report says, each Minnesota office-based physician supports 5.8 jobs, including his or her own. “Although physicians are primarily focused on providing excellent patient care, physician offices and the jobs and revenue they generate are significant contributors to state economies,” says Patricia Lindholm, MD, MMA president. “This study illustrates what people in Greater Minnesota already know, which is that having physicians not only helps the health of patients, but also helps the economic health of communities.” The report found that officebased physicians supported $12.1 billion in wages and benefits, and generated $761 million in local and state taxes. During the same period, Minnesota hospitals generated about $8.4 billion in wages and benefits; nursing homes and

residential care facilities, $3.5 billion; and colleges, universities, and professional schools, $1.6 billion. Physician groups have used economic impact data to argue that the state should minimize budget cuts to health care programs. “When you consider that physicians, nursing homes, and hospitals support about $25 billion in wages and benefits, taking more than $2.5 billion out of the state’s health care economy, as GOP lawmakers are proposing to do, is obviously going to cause financial hardships for these providers and the communities that rely on these jobs,” says Dave Renner, MMA’s director of state and federal legislation.

HIV Cases Drop, But Overall Trends Still Troubling New HIV cases in Minnesota dropped 11 percent in 2010, but state health officials are still concerned about the overall increase in cases of the disease over a 10year period. In 2010, 331 new cases of HIV were reported in Minnesota, compared with 370 cases in 2009. Minnesota Department of Health (MDH) officials say the state has averaged just more than 300 cases per year for nearly a decade, but recent yearly averages have been around 320 cases annually. “This one-year decrease in cases doesn’t tell the whole story,” says Peter Carr, manager of the STD and HIV section at MDH. “With HIV reporting, it’s more important to look at long-term trends rather than just one year.” MDH’s new report on HIV in the state shows that communities of color have the highest rates of the disease, male-to-male sex is the main risk factor for men of all ages, and heterosexual sex is the main risk factor for women. HIV cases remain concentrated in the Twin Cities metropolitan area, the report finds. MDH officials say the new

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News from page 5 data help MDH prioritize its efforts and resources in fighting the disease. The agency currently funds 22 programs through 16 agencies aimed at preventing the spread of HIV in Minnesota.

MDH: State Stroke Deaths in 2009 Numbered 2,023 New data from the Minnesota Department of Health (MDH) show that stroke is one of the leading causes of death in Minnesota. The latest available data, from 2009, show that stroke is the fourth leading cause of death in Minnesota with 2,023 deaths reported that year. The data from 2009 also show that more than 90,000 Minnesotans, or 2.3 percent of adults, reported having had a stroke; Minnesotans were hospitalized more than 11,000 times for stroke or transient ischemic attack (TIA); and the total inpatient

charges for stroke-related hospitalizations were over $367 million, or more than $31,000 per hospitalization. MDH officials say a lack of knowledge about stroke symptoms can be a barrier to getting the needed treatment in time. “When it comes to strokes, we say that ‘time lost is brain lost,’” says Ed Ehlinger, MD, Minnesota commissioner of health. “That’s why it is so important for Minnesotans to know the signs and symptoms of stroke and to call 911 at the first sign of symptoms.” The signs and symptoms of stroke include sudden confusion or trouble speaking; sudden numbness or weakness of the face, arm, or leg, especially on one side; sudden trouble seeing in one or both eyes; sudden trouble walking, dizziness, or loss of balance; and sudden severe headache with no known cause.

Report Says Some Adults Fake ADHD to Get Stimulant Drugs A new report by a Minneapolis researcher finds that a significant number of people are faking symptoms of adult attention deficit hyperactivity disorder (ADHD) in order to get drugs. Paul Marshall, MD, a neuropsychologist with Hennepin Faculty Associates (HFA), says his five-year study looked at how ADHD is evaluated in a clinic setting. He found that 22 percent of adults being evaluated exaggerated or faked ADHD symptoms when being tested for symptoms of the disorder. “The problem is widespread enough that some doctors refuse to even evaluate patients [for ADHD],” Marshall says. An adult ADHD diagnosis usually comes about when an individual reports symptoms to a physician. This makes getting a diagnosis easier for adults, as compared to diagnosing children,

since parents and school teachers are usually involved in those cases. Many of the drugs prescribed to treat ADHD are stimulants, and can be used as inexpensive alternatives to cocaine and methamphetamine. ADHD drugs such as Ritalin have a street value of as much as $4,000; a similar dosage can be obtained by prescription for $400. Marshall says in some cases ADHD drugs are sought not for recreational use but as part of an attempt to gain an advantage in an educational setting. “Students afraid of failing courses in college or graduate school might look for an ADHD diagnosis to get disability accommodations like private testing, longer test times, or special courses to help improve their grades,” says Marshall. “Since ADHD drugs can also increase studying and testing performance in people without the disorder, these drugs are bought and sold on the black market for the same purposes.”

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PEOPLE Range Mental Health Center has added two mental health clinicians. April Bovee, FMHNP, a family psychiatric mental health nurse practitioner, will provide medication management services for adults at the Virginia and Ely offices. Bovee graduated from the College of St. Scholastica and is board-certified. Karen Hill provides outpatient therapy services for adults and children at the Ely office. She received a degree in counseling psychology from Oklahoma State University. Patricia Stinchfield, MS, RN, CPNP, who was the first nurse ever appointed to a key Centers

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for Disease Control and Prevention (CDC) advisory committee on preventing national disease outbreaks, has earned the American Nurses Patricia Stinchfield, MS, RN, CPNP

Association (ANA) Immunity Award for April 2011. Stinchfield, who is the director of infectious dis-

ease services at Children’s Hospitals and Clinics of Minnesota, was appointed in 2004 by the U.S. Secretary of Health and Human Services to a four-year term as a voting member on CDC’s Advisory Committee on Immunization Practices (ACIP). The committee, made

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up of 15 national experts, provides guidance on the control of vaccine-preventable diseases and has a strong influence on the nation’s immunization clinical policy. Stinchfield now serves as the liaison member representative to ACIP from the National Association of Pediatric Nurse Practitioners. In addition to her hospital role, Stinchfield practices at the Children’s Clinic in St. Paul for children and adolescents with human immunodeficiency virus and immune deficiencies. The Minnesota Academy of Family Physicians (MAFP) has selected Anthony Lussenhop, MD, of Alexandria, as its 2011 Family Physician of the Year. The award is presented annu-

Anthony Lussenhop, MD

ally to a family physician who represents the highest ideals of the specialty of family medicine, including caring, comprehensive medical service, community involvement, and service as a role model.

Independent Practitioners ... freer to give you: More Attention More Choices And be your best Advocate

Lussenhop has practiced at the Alexandria Clinic for almost 15 years and also serves as the clinic’s medical director. The award was presented during the MAFP All-Member Celebration in April. Jonathan Herbert, DC, recently opened Northland Applied Kinesiology in Hermantown. Northland Applied Kinesiology is a chiropractic office that specializes in ongoing and challenging health problems. Herbert previously practiced in Los Angeles at the Brain Performance Center, where he worked with children who suffered from autistic spectrum disorders and attention deficit hyperactivity disorder. He also saw patients who suffered from the typical chiropractic problems of headaches and joint pain and more challenging problems of digestive dysfunction, autoimmune diseases, and thyroid conditions. Two podiatrists have joined Winona Health. William Hanson, DPM, of Winona Foot Clinic, and Thomas Nachtigal, DPM, of Winona Family Foot Care, Ltd., began seeing patients at their new location in the clinic on the Winona Health campus in April. Both Hanson and Nachtigal earned their degrees at Rosalind Franklin University's William M. Scholl College of Podiatric Medicine in North Chicago. Hanson has provided care in the Winona area for more than 25 years,

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and Nachtigal for 18 years. Nachtigal will continue to provide services twice a month in his Lake City location and will see patients at skilled • 952-883-3133

nursing residences. JUNE 2011 MINNESOTA HEALTH CARE NEWS



A voice for patients Coalition advocates access for all to quality health care


For the past year, there has been much debate over the passage and implementation of the Patient Protection and Affordable Care Act (ACA) on Capitol Hill, in state capitals across the country, in courtrooms, and of course on the campaign trail. While many stakeholders have successfully conveyed their clients’ views on the act, we observed there was one voice that was getting lost in the debate—that of the patient. Matt Schafer Minnesota Patient Advocacy Coalition

Matt Schafer is the director of government relations for the Minnesota chapter of the American Cancer Society, a founding member of the Minnesota Patient Advocacy Coalition. Previously, he worked at the Minneapolis law firm of Lockridge Grindal Nauen, where he helped develop and expand the firm’s grassroots advocacy practice area. Prior to moving to Minnesota in 2005, Schafer was legislative director for the Fleet Reserve Association in Alexandria, Va., which represents active duty, reserve, and retired military personnel and their families on pay and benefits issues before Congress.

Because of that, more than a dozen health and patient groups representing the elderly, the disabled, patients, survivors, and caregivers whose lives have been affected by chronic conditions such as cancer, heart disease, diabetes, HIV, arthritis, and multiple sclerosis formed the Minnesota Patient Advocacy Coalition to make their voices heard. The purpose of the coalition is to advocate at the state and federal levels of government for all Minnesotans to have access to quality health care services.

The ACA’s reforms help Alyssa and Eric’s family in Duluth. Their daughters Emma, now 11, and Anna, now 9, were diagnosed with type 1 diabetes when they were 2 and 4 years old, respectively. After years of battling skyrocketing premiums and large deductibles, they are no longer faced with the prospect of their daughters being denied insurance coverage because of their pre-existing condition. The elimination of annual and lifetime caps on payouts for claims means that if Emma or Anna faces a medical crisis, she’ll still be able to keep her insurance coverage. If the girls are unable to access or afford coverage as young adults, their parents will be able to cover them until they are 26.

While the coalition is new, many of its members are household names. The American Cancer Society, AARP, the American Heart For more information Association, and American about the Patient Diabetes Association are just a few of them.

The reforms will also help Lisa in White Bear Lake. After losing her sister to cancer, Lisa and her father learned through genetic testing that they both carry the gene Advocacy Coalition, for Lynch syndrome, a genetic Our organizations have advocontact Matt Schafer at condition that greatly increascated for years in favor of the risk of colon cancer. substantial reforms to the es The benefit of knowing they health insurance industry carry the gene is that they are that the Affordable Care Act keenly aware of the need for addresses. Among them are: annual colonoscopies to screen for cancer. The • Prohibiting discrimination against children and drawback of this knowledge is that Lisa has been adults with pre-existing medical conditions marked for life in a way that prevents her from • Closing the Medicare prescription drug finding affordable health insurance because of her doughnut hole pre-existing condition.That ends in 2014 under the • Extending dependent coverage until age 26 Affordable Care Act. • Prohibiting revocation of insurance coverage Because of the Affordable Care Act, patients no • Prohibiting arbitrary lifetime limits on insurance coverage • Prohibiting restrictive annual limits on coverage • Guaranteeing coverage for preventive care with no out-of-pocket costs To the patients our organizations serve, health care reform is more than town hall meetings and news reports. It is a lifeline that, for many, eliminates the most feared part of battling the diseases our organizations are fighting to cure. Because of the Affordable Care Act,Toni (all names are pseudonyms) from Rochester can keep her son


and daughter, both of whom suffered from debilitating diseases as teenagers, on her health insurance. Because of previous illnesses, neither of them would have been able to afford health insurance in college and starting out in the work world had they not been able to remain on their mother’s policy.


longer need to choose between saving their lives and their life savings; and no Americans will lose their lives because they couldn’t afford screenings or treatment. The Minnesota Patient Advocacy Coalition has come together to make patient voices heard and to protect the hard-won insurance reforms that guarantee adequate, affordable insurance for all.

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& Kenneth G. Ammons, DPM Dr. Ammons is a board-certified doctor of podiatric medicine who sees patients at HealthEast clinics in St. Paul and Woodbury. Why did you decide to become a podiatrist? At the most basic level one has to decide whether to go into primary care or one of the specialties. Podiatry allowed me to do both. A large aspect of podiatry is primary care because many people enter the health care system through podiatry and eventually are referred to other specialists. For example, when a patient who has undiagnosed diabetes or certain skin cancers comes to see a podiatrist, the podiatrist makes the original diagnosis and then refers the patient to the appropriate specialist for followup treatment. The other aspect of podiatry is that it allows me to perform many surgical procedures. Tell us about podiatric medical school. Podiatry school takes four years to get your degree, just like any other medical school. The first two years are dedicated to the basic sciences. Many podiatry students take the first two years with other medical students. The next two years are focused on the clinical aspects of podiatry, which includes podiatric medicine and surgery. Once they are awarded the doctor of podiatric medicine (DPM) degree, most students go on to a two- or three-year surgical residency focusing on the lower extremity. During this residency you do rotations through the many departments—anesthesia, radiology, orthopedics, internal medicine, etc. How has health care reform affected podiatry? At this time health care reform has not had any profound changes on podiatry or medicine in general. Most of the changes that will have the most impact will be phased in over the next several years. The one change that exists today is the introduction of electronic medical records. This has allowed for more continuity of care between physicians. It has been a great benefit to our system. It also has helped to diminish medical errors, which can have a huge effect on health care cost. What are the most common problems you see? I treat a wide variety of podiatric medical conditions. Some of the more common ones are painful foot and ankle deformities such as bunions, hammertoes, heel spurs, and fractures. Many of these conditions require surgical care in the hospital or surgery center. Most are outpatient procedures, but some patients have to be admitted for a short stay in the hospital. I also treat many patients who suffer from painful nerve conditions such as neuropathy caused by diabetes, chemotherapy, and alcoholism; reflex sympathetic dystrophy; and fibromyalgia. These symptoms include pain, numbness, tingling, and burning sensations. Surgical nerve decompression can greatly reduce or completely resolve these symptoms.

Photo credit: Bruce Silcox



How does health care insurance cover podiatric care? Just as it would any other medical care. Routine foot care in many instances is considered a noncovered service. This would include treatments such as trimming of the nails and calluses. It also excludes any appliance-like orthotic device and special shoe gear. All of these services are covered if a patient has certain comorbidities such as diabetes, peripheral vascular disease, or neuropathy, and if the patient is on anticoagulants.

Podiatry has been and always will be an integral part of the health care delivery system.

Tell us about podiatry subspecialties. Podiatry has some very interesting subspecialties and many podiatrists focus their practice on these highly specialized areas. These special areas of interest include geriatric medicine and podopediatrics, which is the treatment of infant and adolescent foot and ankle problems. Some practitioners focus on severe trauma to the foot and ankle as a result of motor vehicle accidents, injuries due to heavy equipment, severe burns, and injuries in which the skin is torn off, as can happen in lawnmower accidents. The newest area is the treatment of nerve injuries and of neuropathy and nerve pain. What are some common misperceptions about podiatry? The biggest misconception about podiatry is that we are not real doctors. Nothing could be further from the truth. As I mentioned earlier, podiatrists go to medical school just like any other doctor. Another misconception is that podiatrists just cut toenails and trim calluses. In fact, most podiatrists perform a wide variety of very complicated foot and ankle surgeries in the hospital setting. What are some common examples of how podiatrists work with other kinds of kinds of doctors? To be an effective podiatrist, one must be able to interact with other kinds of doctors. Referrals between podiatrists and other doctors go both ways. Communication between the podiatrist and other doctors is very

important to assure that the patient is diagnosed and treated promptly and properly. The list of physicians that podiatrists work closely with is long and includes rheumatologist, dermatologist, internal medicine, family practice, endocrinologist, neurologist, orthopedics, and physical medicine and rehabilitative specialist. What does the future hold for podiatry? The future for podiatrists looms large. We are facing an aging population and the conditions that affect this segment of the population will only increase in coming years. Incidence of diabetes is on the rise and is affecting people at a much younger age. Because diabetes can have serious consequences to the foot and leg, proper foot care is extremely important to this group of people. If patients are not treated and educated early about the effects that diabetes can have on the foot, many will suffer loss of limb. Podiatry has been and always will be an integral part of the health care delivery system. What is the best thing people can do to have healthy feet? Feet are like everything else when it comes to your health: Don't ignore early warning signs. The No. 1 warning sign is pain. Pain is not normal. Many people think feet are supposed to hurt, particularly after a long day at work or play. This is not the case. If you visit your podiatrist early, many potentially serious conditions can be treated easily and successfully.

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E Fighting

rare diseases How we can expand treatment options

very week, Minnesotans affected by devastating diseases visit my Senate offices. While their circumstances vary, they’re often heartbreaking. Sometimes treatments aren’t working, or the best treatment available is unaffordable. Some of the most difficult stories I hear are from Minnesotans fighting diseases that are so rare that viable treatment options are not available. These visits with the child with neurofibromatosis or the husband with pulmonary fibrosis often aren’t about how to get treatment for the family members themselves. Frankly, it’s usually too late for them. Instead, families are asking for research money to help those who will be diagnosed in the future. This selflessness is inspiring and sobering: inspiring because these are Minnesotans taking the time to be spokespeople and advocates for a greater good; but sobering to look them in the eye and know there’s no treatment or device that will save their lives in the time frame they need.

By Sen. Al Franken

Challenges to progress After hearing these stories of families affected by rare diseases, I’ve become interested in how we conduct research and product development for these diseases— because we clearly aren’t doing enough. I sit on the Senate Health, Education, Labor, and Pensions Committee, which oversees the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), so I have an opportunity to help. I quickly learned that there are some key challenges to progress on rare diseases. Definitions. Definitions create the scope of a problem and set parameters for problem-solving. But estimates of the number of different rare diseases range from 5,000 to 8,000, and part of this wide range is the variation in how rare diseases are defined. For example, the Orphan Drug Act (ODA) generally targets diseases that affect 200,000 or fewer Americans per year. This contrasts with the Humanitarian Use Device definition for medical devices, which provides an expedited review process for devices intended to benefit patients suffering from ailments that affect fewer than 4,000 Americans each year. Both definitions serve important purposes, but it’s difficult to create a definition that doesn’t feel like a line in the sand. While we may need to continue to use different definitions for different purposes, we also must find a way to resolve the problem that these different definitions create. Clinical trials. When a disease such as Guillain-Barré syndrome occurs in fewer than 2 in 100,000 people, it’s nearly impossible to recruit enough research participants to make a viable study. There are some promising models we can learn from, though. For example, the Children’s Oncology Group, which includes Mayo Clinic and University of Minnesota researchers, has more than 150 concurrent studies with over 40,000 patients recruited through 200 medical institutions in the U.S. and internationally. This group has brought about real improvement for kids with cancer and shows that collaborative research models can improve recruitment and yield results. We need to fund more of this type of work. Health insurance. Another barrier to clinical trials has been health insurance, since many health plans historically haven’t covered routine care if a beneficiary is participating in a clinical trial. The good news is that this changed with the passage of the Affordable Care Act (ACA) in March 2010. Under the health reform law, health plans must cover routine care, regardless of clinical trial participation. The ACA also



The options for most families affected by rare diseases continue to be too little, too late. limits annual caps and eliminates lifetime caps. This makes a huge difference for a family with a child with hemophilia, who may reach his lifetime cap before the age of 6. Market incentives. Laws like the Orphan Drug Act have fostered enormous progress in the treatment of rare diseases. Since the act became law in 1983, more than 350 new treatments for rare diseases have been approved by the FDA because companies saw the benefit of a longer period of market exclusivity, even if the target population is small. We know these incentives work because in the decade prior to the passage of the ODA, fewer than 10 rare-disease drugs went on the market. But 350 drugs in 20 years aren’t enough. And since most rare diseases are pediatric conditions, Congress also enacted laws like the Best Pharmaceuticals for Children Act, the Pediatric Research Equity Act, and the Pediatric Medical Devices Safety Act to remove barriers and create market incentives for treatments specifically for kids. The Safe Medical Devices Act that created the Humanitarian Use Device category at FDA has enabled more than 50 devices to be approved under this category. While these laws have helped, the reality is that the options for most families affected by rare diseases continue to be too little, too late.

Improved market incentives. My top priority as we begin discussions in Congress is how Minnesota’s medical device industry can play a bigger role in improving the lives of patients with rare diseases. I’m proud that companies like Medtronic and EV3 have been leaders in developing humanitarian use devices, and I’d like to see more of these devices developed by Minnesota companies. That’s why I’m working on legislation that revisits the incentive structure for devices for rare diseases so we make sure that we’re maximizing development of innovative devices and ensuring patient safety. There’s bipartisan interest in this topic since it makes sense for our families and our industries. So while the stories of rare disease are sobering, we can be heartened by the fact that we have opportunities. With organizations like the University of Minnesota’s Center for Orphan Drug Research and the cancer centers at Mayo and the U of M, our state has a great foundation to be a leader in this area. I look forward to working with Minnesota’s health care and research communities to make real progress for the families who are affected by these conditions. Sen. Al Franken (D–Minn.) is an original cosponsor of Senate Bill 606, the Creating Hope Act, introduced in March by Sen. Robert Casey (D–Pa.). This bill intends to spur private-sector innovation aimed at treating rare and neglected pediatric diseases.

Priorities for Congress Although we’ve learned a lot since 1983 from both research and market perspectives, we must do more. That’s why I was pleased that the Institute of Medicine published a report on these issues last year: “Accelerating Rare Diseases Research and Orphan Product Development.” The report includes some concrete recommendations for next steps that Congress must consider. And we have some real opportunities to do so in the near future. For example, in the Senate we soon will be discussing the laws that govern FDA user fees for drugs and devices. This is an ideal time to consider opportunities to improve treatments for rare diseases. Some top priorities for Congress should be: A national strategy. We need a cohesive, national plan to promote rare-disease research and treatment development. The plan should include milestones so we can track our progress moving forward.

Mike Mesick, MD Mike is Board certified in family medicine, holistic medicine and medical acupuncture. His patients appreciate his willingness to form a partnership with them to not only diagnose and treat their current condition but also assist with their goals for optimum health.

A comprehensive plan for rare diseases at the National Institutes of Health. NIH needs to develop a comprehensive action plan that includes all NIH institutes and looks at publicprivate partnerships to enable researchers to share resources like biorepositories and animal models. The current NIH Office of Rare Diseases Research does good work, but we must encourage researchers to work more collaboratively on rare-disease research across the entire NIH. JUNE 2011 MINNESOTA HEALTH CARE NEWS



Can arm-cycling reduce leg pain?


s spring turns to summer, and Minnesotans increasingly venture out on walks to get fresh air and exercise, aching leg muscles may force some of them to cut their walks short. Assuming the pain is just a normal sign of aging or perhaps the result of prolonged inactivity over the winter, these individuals may not think to mention it to their medical provider. However, it could be a sign of a potentially life-threatening disease. Leg pain or cramping brought on or worsened by walking and other exercise can be a symptom of peripheral artery disease (PAD). PAD, which is caused by a buildup of fatty deposits in the blood vessels of the legs, is associated with increased risk of serious medical events, such as heart attacks, strokes, and even death. It affects more than 8 million Americans.

U of M study compares upper-body exercise to treadmill training

Diagnosing and treating PAD

By Diane Treat-Jacobson, PhD, RN

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Early detection and treatment of PAD are critical but complicated. The most noticeable symptom of PAD is leg pain (claudication) that flares up during physical activity and is relieved with rest. Claudication is most often characterized by pain in the calves, but it may also be felt in the thighs, hips, and buttocks. Unfortunately, one-third of people with PAD do not report this symptom to their medical provider. Another factor complicating early detection and delaying treatment is that, according to the American Heart Association, approximately 75 percent of people with PAD have no symptoms or symptoms that are not typical. The risk factors for PAD are similar to those for coronary heart disease and cerebrovascular disease: smoking, diabetes, high blood pressure, and high cholesterol. The prevalence of PAD increases with age—20 percent of those over the age of 70 have the disease. Although the incidence of PAD is similar for both genders, women are less likely than men to have symptoms of claudication, and they frequently report atypical symptoms. The painful onset of claudication may make it difficult to walk, which can diminish a patient’s quality of life. Over time, the limited blood flow to the limbs that PAD causes can lead to ulceration, gangrene, and even amputation of an affected limb. Because of the risk of other serious medical events such as a heart attack or stroke, it is crucial that physicians treat the symptoms of claudication. An easy and inexpensive way to screen for PAD involves using a blood pressure cuff and a Doppler ultrasound to measure blood pressure in the arm and ankle. This method, which measures a person’s ankle-brachial index (ABI, the ratio between the ankle and arm pressures), takes only about 10 minutes and can be performed in any health facility. Patients should have their ABI measured when they have more than one risk factor; when they have leg pain on exertion that is relieved by rest; if they have an aching, burning foot pain, especially at night; or if they have a foot ulcer that does not heal. An ABI of .09 or lower indicates the presence of PAD.

PAD at a glance

The EXERT study

What is peripheral artery disease (PAD)? PAD, a common disease caused by a buildup of fatty deposits in the arteries of the legs, is associated with major disability and significantly increased risk of heart attack and stroke.

What is the EXERT study? The EXERT (EXercise Training to Reduce Claudication: Arm ERgometry versus Treadmill Walking) study aims to understand how people with leg pain (claudication) respond to different types of exercise. The National Heart, Lung, and Blood Institute of the National Institutes of Health is funding the five-year study. Patients who volunteer to participate in the EXERT study receive supervised exercise training three times a week for 12 weeks to determine the effects of aerobic arm or treadmill exercise on their leg pain, walking capability, blood flow, and quality of life. Changes in claudication symptoms are measured by exercise tests that are supervised by a cardiologist.

Risk factors: diabetes, cigarette-smoking, high blood pressure, high cholesterol, older age Symptoms: pain or discomfort in the leg muscles during physical activity, relieved within minutes of rest Treatment: exercise therapy, smoking cessation, anti-platelet therapy, risk factor management Treatment for PAD typically includes a combination of lifestyle changes (e.g., smoking cessation), exercise rehabilitation, anti-platelet therapy such as aspirin, and risk factor management.

Why should patients volunteer to participate in the EXERT study? Previous research has shown that exercise is effective in improving symptoms of claudication. Individuals who participate in supervised exercise programs often: • increase the distance they can walk before pain starts; and • increase how far they can go before they have to stop because of pain. When does the supervised exercise training begin? The study is ongoing, so exercise training can begin anytime at hospitals and clinics in five locations— Minneapolis, St. Paul, Burnsville, Coon Rapids, and Edina.

Research on exercise for people with PAD Research has shown that exercise is particularly effective in reducing symptoms of claudication and improving the quality of life for people with PAD. In fact, participation in supervised exercise rehabilitation programs often increases the distance that patients can walk by up to 150 percent. Previous studies have shown that both aerobic arm exercise (“arm-cycling”) and treadmill exercise can improve walking distance in patients with claudication. A five-year study now under way at the University of Minnesota is comparing the effectiveness of upper-body cycling versus treadmill walking during supervised exercise training programs. The goal of the study—titled EXercise Training to Reduce Claudication: Arm ERgometry versus Treadmill Walking (EXERT) —is to understand how people with claudication respond to different types of exercise. Participants in the study, funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health, receive supervised exercise training three times per week for 12 weeks after being randomly placed into one of three groups—the arm exercise group; the treadmill group; or the control group, which is encouraged to do an exercise program at home. For more information, In preliminary studies, contact the EXERT outcomes in walking ability Study Office at and distance for the armcyclers were at least as good 612-624-7614 or as the outcomes for subjects in the other groups. The armor visit cyclers also showed a decrease in resting blood pressure, while the others did not. As primary investigator for the EXERT study, I suspect that the painful leg symptoms induced by walking may prevent some walkers from reaching a level of aerobic exertion sufficient for cardiovascular benefit. Walking exercise also causes inadequate oxygenation of the leg muscles, which can cause inflammation. With aerobic arm exercise, which doesn’t cause pain

or limit muscle oxygenation, patients can exercise at the level allowed by their cardiorespiratory fitness. In particular for individuals who are unstable or can’t do lower-body exercises, arm-cycling could be a promising therapy. The EXERT research team is excited about the potential of arm-cycling to make life better for people with PAD. The supervised exercise training can reduce their symptoms of claudication and put the spring back in a PAD patient’s step. Diane Treat-Jacobson, PhD, RN, an associate professor at the University of Minnesota School of Nursing, is principal investigator of the EXERT study.

Living with gout? Keep enjoying life’s simple pleasures.

Gout is the most common form of inflammatory arthritis in men and affects millions of Americans. In people with gout, uric acid levels build up in the blood and can lead to an attack, which some have described as feeling like a severe burn. Once you have had one attack, you may be at risk for another. Learn more about managing this chronic illness at



I N T E R N AT I O N A L M E D I C I N E Public education and public health

Global health Expanding on Minnesota’s public health legacy By John R. Finnegan Jr., PhD


alk with public health leaders today and you will likely hear something like this: “Public health is global health.” Our notion of “global” is forged in the blazing pace of the 21st century in which all nations share the same chronic diseases and pandemics can spread worldwide in hours. But Minnesota has a 140-year history of working to improve the health of the state, the nation, and the world.

In 1862, Congress passed and President Lincoln signed what would turn out to be one of the important pieces of 19th-century lawmaking: the Morrill Land Grant Act. The act gave each state federal land on the condition that the land, or money from its sale, be used to establish colleges. The idea was that public universities in undeveloped parts of the country would generate knowledge and learning to create flourishing economies of educated, healthy, and prosperous people. After the Civil War, the University of Minnesota responded to the Morrill “tonic,” emerging in the 1870s with its first permanent faculty and president. It set about the mission of helping to transform Minnesota, which it has been doing ever since. Health was an important element of this mission. University President William Watts Folwell, a Civil War veteran, appointed his comrade-in-arms, Dr. Charles N. Hewitt, as the first professor of public health in the university (and, very likely, in the nation). Hewitt was a physician, innovator, and global thinker who pushed the boundaries of prevention and public health. He visited Louis Pasteur in France and Robert Koch, who helped frame the “germ theory” of disease, in Germany. Hewitt built relationships with scientific colleagues back East in the U.S., and initiated vaccine production in Minnesota as well as one of the first disease surveillance systems in

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The Alzheimer’s Association is here to help. 16



the country. As a university faculty member, the founding secretary of the State Board of Health (forerunner of today’s Minnesota Department of Health), and an early member of the Minnesota State Medical Society (Minnesota Medical Association forerunner) that sponsored the public health legislation, Hewitt was a key leader. He and others created the organizational infrastructure that established Minnesota as a bellwether for health innovation. From the beginning, global connections were important. Zip forward to the present. Most developing nations of the 21st century know very well that research universities and higher education are important pathways out of the poverty trap. And they want to partner with the best systems of higher education, especially the land-grant institutions like the University of Minnesota that haven’t forgotten their mission to transform learning into impact on people’s lives. Launching the “One Health” initiative While the university has been “global” for a long time, today it is engaged in formal planning about how best to shape its strengths in partnership with global and peer institutions. What is emerging in these discussions so far is the idea of global “portfolios” with a broad, inclusive focus on four areas key to human development and achievement: food, health, education, and economic development and sustainability. Within each portfolio, one can already find many projects, programs, and initiatives that faculty across the university have been pursuing for many years with global partners. But the institutional planning happening today brings the potential for connecting and synergizing disparate activities, improving our effectiveness as global university partners, and sharpening our considerable assets in tackling some of the greatest challenges facing the world. Hewitt’s legacy that launched global health at the University of Minnesota is well captured in this process. To illustrate, here is an example of a recent major initiative in the University of Minnesota global health portfolio: In late 2009, the University of Minnesota was among a team of recipients of a five-year, $185 million contract from the U.S. Agency for International Development (USAID). The College of Veterinary Medicine (CVM) and the School of Public Health (SPH) were poised to take a leadership role in training multidisciplinary teams of health professionals to prepare for and respond to emerging disease outbreaks. The initiative from USAID directed the planning to take place with local partners in several “hot spots” around the globe where the conditions are ripe for zoonosis, in which an animal-borne disease makes the jump to humans. Specifically, over the course of the five-year project, the team on the project known as RESPOND will work to: • Improve the training and response capacity for identifying, investigating, analyzing, and controlling outbreaks of zoonotic disease within countries and regions

“One Health” merges the interests of human and animal health and the environmental conditions within which they interact to shape health for good or ill. • Strive to improve the coordination among public and private interests involved in an outbreak • Support in-country outbreak response activities • Introduce new technologies to help improve a country's response to an outbreak It’s clear from everything we know about emerging diseases that a multidisciplinary approach is critical. The new framework we are using is called “One Health.” It merges the interests of human and animal health and the environmental conditions within which they interact to shape health for good or ill. The interaction of human and animal health in the environment is a complex “dynamic adaptive system” that requires interdisciplinary collaborations and communications in all aspects of health, from clinical to population and community approaches. While the specifics of One Health are formative in how it is brought to bear on global challenges, we think the potential benefits of collaboration with global partners in building capacity are immense—on both sides. One of the first activities we undertook through the USAID initiative was a two-week Global Health Institute last August in Global health to page 19

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June Calendar 7,9 & 10

Seen on da Streets Walk into our clinic! Services are available to everyone age 15–39. Seen on da Streets provides outreach and health education to improve your health and wellbeing. Receive STI screening and treatment options and have a chance to talk about sex and educate yourself. Counseling for individuals and partners is available. Call us at 612-588-9411 for more information. Tuesdays, Thursdays, and Fridays each week, 1–4:30 p.m., Fremont Clinic, 3300 Fremont Ave. N., Minneapolis


Adults with Disabilities “We R Able” is a group for people who have a disability or who are living with a disabled adult. Meetings are held the first and third Wednesdays of the month. For more information, call Jeanette Kester at 320-358-3616. Wednesday, June 15, 1:30–3:30 p.m., Chisago County Senior Center, 38790 6th Ave., North Branch


Alzheimer’s/Dementia Caregiver’s Meeting Are your caring for someone affected by memory loss and needing extra support? The Alzheimer’s Association trains the facilitator. Come and see if this is the support you need. There is no commitment to attend monthly. For any questions and a one-time registration, call Judy Salaba at 651-698-8572. Thursday, June 16, 6–7 p.m., The Alton Memory Care, 1306 Alton St., St. Paul


Living With Lynch Syndrome: Third Annual Conference This educational program for individuals and families living with Lynch syndrome is hosted by HealthEast Cancer Care, Mayo Clinic, and University of Minnesota. We will review medical updates, discuss challenges unique to families with Lynch syndrome, and explore current research. Participants can speak with experts. For more information, contact Anna Leininger at 612-626-9898 or Saturday, June 18, 8 a.m.–5 p.m., Mayo Clinic, 200 1st St. S.W., Rochester

Dystonia Awareness Week June 5–11 Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The disorder forces the body into repetitive, often twisting movements as well as awkward, irregular postures. There are several forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. It causes varying degrees of disability and pain, from mild to severe. The disorder affects men, women, and children of all ages and backgrounds, including 300,000 people in the U.S. alone. Although dystonia is a chronic disorder, the vast majority of dystonias do not affect cognition or intelligence, or shorten a person's life span. At present there is no cure for dystonia, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies. Treatment options generally consist of several approaches including non-drug therapies, oral medications, injected medications, surgery, and complementary therapies. Treating dystonia is most successful when the overall treatment plan addresses the whole person: body (physical medicine), emotions (mental health), and spirit (patient support). For more information about locating a physician specializing in dystonia and support groups, visit the Dystonia Medical Research Foundation at www. or call 800-377-3978.

13 Live Successfully with Dystonia Despite their challenges, members of the dystonia community are resilient and inspiring people. Come join us and share your insight, questions, and concerns. This group meets the second Monday of each month. No registration is necessary. Please call 651-232-2258 with questions. Monday, June 13, 6–7:30 p.m., Bethesda Hospital 559 Capitol Blvd., Cafeteria, C-level, St. Paul


Down Syndrome Parent Group You’ll find support, information, new ideas, and other parents of children with Down syndrome who understand. New members are always welcome. Please call Down Syndrome Association of Minnesota at 651-603-0720 or 800-511-3696 for more information about this group or others meeting in Minnesota. Childcare fee: $3 per child. Monday, June 20, 6–8 p.m., Shepherd of the Valley Lutheran Church, 12650 Johnny Cake Rd., Apple Valley


Prostate Cancer Support Group This group is for patients, family, and friends who are seeking to ease the personal struggles accompanying diagnosis, treatment, and survival of prostate cancer. Meetings are held the third Tuesday of every month. Please call 952-993-5700 to register. Tuesday, June 21, 5–6 p.m., Park Nicollet Methodist Hospital campus, 3931 Louisiana Ave. S., Frauenshuh Cancer Center, main lobby, St. Louis Park


Maintaining a Healthy Heart Get tips for getting and staying hearthealthy while living a busy life. The speaker is Jodi Denker, a master’s-prepared exercise physiologist at United’s Nasseff Heart Hospital. She works in cardiac services, employee health and wellness, and community health and education. No charge. Please call 651-298-5493 with questions. Friday, June 24, 10:15–11:30 a.m., West 7th Community Center, 265 Oneida St., St. Paul

Send us your news: We welcome your input. If you have an event you would like to submit for our calendar, please send your submission to MPP/Calendar, 2812 E. 26th St., Minneapolis, MN 55406. Fax submissions to 612-728-8601 or e-mail them to jbirgersson@ Please note: We cannot guarantee that all submissions will be used. CME, CE, and symposium listings will not be published.

America's leading source of health information online 18


Their mission is to transform learning into impact on people’s lives.

Global health from page 17

Kampala, Uganda, one of the initiative’s hot spots. Along with colleagues from the U of M’s CVM and School of Nursing, and from Makerere University, in Kampala, SPH faculty taught a host of courses spanning zoonotic disease, epidemiology, applied biostatistics, risk communication, participatory research, and global public health. (A video from the Global Health Institute is at /outreach/go/gouganda.asp.) Twelve University of Minnesota students from the schools of public health, nursing, and veterinary medicine joined 65 students and junior faculty from universities in seven East African countries at the institute, which was sponsored, in part, by the U of M. During the institute, participants traveled to rural Uganda to visit Queen Elizabeth National Park, a health center, and a fishing village on Lake George—where they witnessed an orphaned wild elephant living and mixing with villagers. The situation puts the villagers in danger of being trampled by an unpredictable wild animal, as well as zoonotic transmission of pathogens such as tuberculosis. Closer to the topic of emerging diseases was the sight of water buffalo and hippos practically sitting on fishing canoes. This proximity obviously creates many opportunities for the wild, the domestic, and the human to interact, raising the potential to spread disease or even to incubate new ones. Getting up close and personal with this human-animal-environment interchange “hot spot” illustrated the value of approaching the

prevention of emerging infectious disease through a One Health lens. It was a true “aha!” moment for Minnesota participants as well as their African counterparts. And it was gratifying for the faculty members from the U.S. and Africa to witness the exchange of ideas and solutions among the participants. Indeed, we have much to learn from our African colleagues. We have much to share, too. Reaffirming the land-grant mission From the beginning, Minnesota medical and public health pioneers like Charles Hewitt recognized that health is global: What happens in the villages and cities of Africa and other places will sooner or later shape what happens in the villages and cities of Minnesota. Just ask our Latino, Asian, and African immigrants and refugees who have enriched this state with their cultures, hard work, and dreams. Higher education helped transform this nation in areas such as health. Now we can “pay it forward” to assist others in building the capacity they need to sustain a healthy, educated, and prosperous people. In these global engagement efforts, we are reaffirming our own land-grant mission around the world through research, learning, and service. John R. Finnegan Jr., PhD, is dean of the University of Minnesota School of Public Health.

WHO’S A BIGGER BASEBALL FAN, YOU OR ME? You’ll find that people with Down syndrome have a passion for knowledge and learning that can rival anyone you’ve met before. To learn more about the rewards of knowing or raising someone with Down syndrome, contact your local Down syndrome organization. Or visit today. It is the mission of the Down Syndrome Association of Minnesota to provide information, resources and support to individuals with Down syndrome, their families and their communities. We offer a wide range of services, programs and materials at no charge. If you are interested in receiving one of our information packets for new or expectant parents, please email or For more information please call:

(651) 603-0720 • (800) 511-3696

©2007 National Down Syndrome Congress





sclerosis Advances in understanding lead to new treatments By Randall T. Schapiro, MD, FAAN


hen Prof. Jean-Martin Charcot of the University of Paris first described the multiple scars of multiple sclerosis (MS) in the mid-1800s, he could hardly have imagined what lay ahead. Then as now, the hardened plaques found in the white matter of the brain were a mystery. But it has gotten a whole lot more complicated. For more than a century, MS was thought to be a disease that affected only the white matter (myelin) of the central nervous system (CNS, the brain and spinal cord). However, in the past decade there has been an emphasis on the fact that the gray matter is also involved. While myelin clearly is a target, the nerves’ axons—the long, threadlike fibers that conduct impulses away from nerve cells— become damaged in the process as well.

Leg Pain Study Do your legs hurt when you walk? Does it go away when you rest? Or, have you been diagnosed with PAD? You may have claudication, caused by lack of blood supply to the leg muscles The University of Minnesota is seeking volunteers to take part in an exercise-training program, funded by the National Institutes of Health

To see if you qualify, contact the EXERT Research Team at

612-624-7614 or email or visit 20


Our knowledge of the immune aspects of MS grows as we become more aware of changes related to the disease process. We thought that the T cells—white blood cells that play a central role in controlling the immune response—were the culprits, attacking targets that normally would be left alone. These targets include myelin, the cell that makes myelin (oligodendrocyte), and axons. It appears clearer now that the B cells—a type of white blood cell that produces antibodies—are also involved in the immunological process. Variability is MS hallmark There is a pattern of inflammation and degeneration in MS that is remarkable because of its variability from individual to individual. Many things contribute to this variability. It can truly be said that no two people with MS are alike. Clearly there is a genetic component. In the past decade this has become a bit clearer, but genetics does not entirely explain the variability. Chromosome 6, an area involved in control of the immune system, has an increased susceptibility to multiple sclerosis. There are also linkages involving chromosomes 3, 5, and 19 that have potential to expedite MS, but only in a minority of individuals. There is much more to learn about the complex genetics. The likelihood of getting MS is typically about two-tenths of 1 percent. If a parent has MS and the child is a female, the risk jumps to 4 percent; if male, 2 percent. For identical twins, there is a 30 percent likelihood that if one has MS, the other will too. This demonstrates that more is involved than simply heredity. It is well known that as we look north and south from the equator, the

amount of MS increases. This may be because of the genetics of those who live in those regions. In the past few years, the possibility of a role for vitamin D has also been raised. Clearly it fits the epidemiological pattern, with vitamin D levels falling as distance from the equator increases. Data supporting findings of low vitamin D levels in those with MS is becoming more available. The final chapter to this story has not been written yet, but is potentially exciting. It has been known all along that women are more likely to become affected than men. It was thought that the ratio was about 2-to-1, but it appears to be increasing to 4-to-1. The reason for the change is not clear, but the pattern is such that men appear to be potentially more affected when the disease is present in them. Black people appear to have a more aggressive form than Caucasians, and Asians are unique in that they appear to develop more activity in the spinal cord than in the brain. It is hoped that recognizing these differences will lead to increased understanding of the abnormal physiological processes associated with MS. The role of infection by a virus or similar organism in MS has been a hypothesis for generations. There have been many candidates in the past including measles, herpes, chlamydia, retroviruses, and now the Epstein-Barr (EB) virus. The EB virus of infectious mononucleosis is present in people with MS more often than would be expected. Whether this is cause and effect or a manifestation of the activity of the immune system is not yet clear. Advances in diagnosis, treatment Understanding some of the immunology of MS has led to the development of newer treatments aimed at slowing the disease process. Simplistically, MS happens when a susceptible individual’s immune system is presented with an antigen (a foreign substance) by a cell that programs T cells with B-cell participation. Those cells enter the bloodstream and pass through the blood-brain barrier into the nervous system. The potency is expanded via cytokines, central nervous system hormones. Eventually, the cells find myelin or oligodendrocytes that remind them of the original antigen, and the damage begins. Diagnosing MS remains a clinical process. The McDonald Criteria, developed in 2001, revised in 2005 and 2010, and regarded as the gold standard, allow for an MS diagnosis if a person has “separation in time and space” of neurological symptoms and findings. That typically means more than one attack involving the CNS at more than one site. Using magnetic resonance imaging (MRI) can expose the timing and anatomy of involvement when the clinical picture is not entirely clear. The actual criteria are more complicated, but suffice to say that they have made the diagnosis easier and have given confidence to an earlier diagnosis. Looking for increased immune activity in spinal fluid also continues to be helpful. Management of MS Managing MS is about disease management, symptom management, and person management. Changing the course of the disease is something every provider longs to do. Nonetheless, managing the symptoms of MS remains the backbone of treatment. Attention to a patient’s personal, vocational, and lifestyle issues is also important. MS has traditionally been divided by its apparent progression into relapsing, a fluctuating pattern of attacks and periods of calm (around 55 percent of those with MS); secondary progressive, a pat-

It can truly be said that no two people with MS are alike. tern where the attacks fade and progression occurs (around 30 percent); primary progressive, progressive from the onset (10 percent); and progressive relapsing, progressive at onset, followed by relapses later (5 percent). These are not actual forms of the disease, but rather patterns of progression. The descriptive term for the MS changes if the path deviates. There are now seven FDA-approved medications designed to potentially change the natural course of MS. They have all been approved for relapsing MS. Multiple sclerosis to page 25

When you’re e told

your daughter’s daughter ghter’s esophagus us isn’t connected, you think it’s the hardest news you’ll ever have to swallow.

For Ir Ireland’s eland’s par parents, ents, s, that news came after r surgery, sur gery, when they w were eree told infection w was as threatening her life life.. W Wee told them w wee ccould contin continue ue infusion therapy and beat the infection — at home home.. And because w wee focus exclusively ex clusively on pediatric care care, re, w we’ve ee’vve pro proven ven that w wee can reduce uce hospital and emerg emergency ency department department admissions admissions,, helping kids ids likee Ireland thri lik thrive. ve. Meet Ireland and lear learn n more re at m





Stroke is a “brain attack,” a medical emergency that requires rapid assessment and treatment in order to prevent or minimize permanent brain damage. While stroke is often treatable and preventable, it remains a leading cause of death and disability. In the United States, there are about 795,000 new strokes each year, an average of one stroke every 40 seconds. Stroke is the third leading cause of death and the No. 1 cause of severe disability in the United States. In 2008, there were 11,900 hospitalizations for stroke in Minnesota (about one every 45 minutes). Types of stroke

Stroke The brain’s equivalent of a heart attack By Matthew Ostrander, MD



The term “stroke” is used broadly to describe an abrupt onset of damage to the brain caused by lack of blood flow or bleeding into or around the brain. There are two broad categories of stroke—ischemic and hemorrhagic. Ischemic strokes are by far the more common type of stroke, accounting for about 85 percent of all strokes. These strokes occur when an artery supplying a portion of the brain gets plugged (usually from a blood clot). The plugged artery prevents vital, oxygen-carrying blood from getting to where it’s needed. If the brain tissue goes without oxygen and nutrients for more than a few minutes, brain cells begin to die. This region of brain death is the “stroke.” The symptoms of stroke begin instantaneously. These symptoms will vary, depending on what part of the brain is affected.

Common stroke symptoms include weakness, speech difficulty, numbness, and vision loss. The symptoms are usually on one side of the body. The acronym “FAST” (Face, Arm, Speech, Time) is one way to help quickly recognize common signs of stroke:

race, and family history of stroke cannot be changed. Modifiable risk factors for stroke include high blood pressure, smoking, diabetes, and high • Sudden onset of numbness or weakness cholesterol. Other modifiable factors associated of the face, arm, or leg, especially on one with stroke are obesity, lack of exercise, and high side alcohol intake. • Sudden confusion, trouble speaking or High blood pressure is the No. 1 modifiable understanding risk factor for stroke, and about one of every three • Sudden trouble seeing in one or both eyes adults in the United States has high blood pressure. • Face: Ask the person to smile. • Sudden trouble walking, dizziness, loss of Blood pressure medications have been shown to Does one side of the face droop? balance or coordination lower stroke risk by 30 percent to 40 percent. • Sudden severe headache with no known • Arm: Ask the person to raise Unfortunately, only about 50 percent of Minnecause both arms. Does one arm drift sotans with high blood pressure have their blood If you or someone you’re with experiences downward? one or more of the above symptoms, pressure adequately controlled. • Speech: Ask the person to repeat CALL 911. Smoking is another modifiable risk factor that a simple phrase. Is his or her approximately doubles the risk of stroke. Smoking speech slurred or strange? increases stroke by causing disease of the blood vessels and by mak• Time: If you observe any of these signs, call 911 immediately. ing the blood clot easier. This increased stroke risk is seen in people Occasionally, the symptoms of a stroke resolve quickly and the of all ages. Despite its risks, about 17 percent of Minnesotans conperson may return to normal within minutes without any treatment. tinue to smoke. This occurs when a blood clot blocking a brain artery dissolves on Diabetes has also been shown to at least double the risk of its own, before any permanent damage occurs. This stroke-like stroke. Diabetes increases the risk for high blood pressure, high choevent that lasts only for a short time is called a transient ischemic lesterol, and disease of the arteries. Appropriate management of attack (TIA). TIAs are often referred to as “mini-strokes.” Even if high blood pressure and high cholesterol in people with diabetes has the symptoms go away quickly, a TIA is still a medical emergency, been shown to significantly reduce the risk of stroke. About 6 persince people are at high risk of having a full-blown stroke directly cent of people in Minnesota have diabetes. Unfortunately, about after a TIA. Rapid evaluation and treatment after a TIA have been one-third of these people do not realize they have diabetes, which shown to prevent future strokes. Stroke to page 24 With any signs of a possible stroke, it is important to call 911 immediately, since potential treatments are time-sensitive. When a stroke is due to a blood clot, the “clot-busting” drug called tissue plasminogen activator (TPA) has been shown to reduce Preventable stroke risk in Minnesota the chance of disability if given within the first few Risk factor Percentage of hours after symptoms begin. population at risk The earlier TPA is given, the High blood pressure 22 better the chance of a good Smoking 16.7 outcome with little or no Diabetes 6.4 disability. High cholesterol 34 Unlike ischemic strokes, Physical inactivity 16 “hemorrhagic” strokes are Obese/overweight 62 not due to lack of blood Source: Minnesota Department of Health flow, but are caused by bleeding into or around the brain. The most common type of hemorrhagic stroke occurs when blood leaks directly into the brain tissue. In most cases, this bleeding is caused by years of high blood pressure, which weakens small blood vessels within the brain. A second type of hemorrhagic stroke is due to bleeding around the brain caused by a ruptured aneurysm. An aneurysm is a weak point within the blood vessel that allows it to enlarge. When a brain aneurysm ruptures, the person will have an instantaneous and severe headache, which is a medical emergency requiring immediate treatment.

Common symptoms of stroke

In the next issue.. • Plastic surgery • Acute pain • Cataracts

Risk factors for stroke

There are several risk factors for stroke, which include fixed risk factors and modifiable risk factors. Fixed risk factors such as age, JUNE 2011 MINNESOTA HEALTH CARE NEWS


American Stroke Association:

Resources Stroke from page 23

prevents them from getting the appropriate treatment. Alarmingly, 37 percent of adults in the United States have pre-diabetes, and the proportion of Americans with diabetes is expected to double by the year 2050. High cholesterol is a known risk factor for disease of the blood vessels, which can lead to heart attack and stroke. Cholesterol-lowering medications called statins lower stroke risk. Statins are able to significantly lower the “bad cholesterol,” or low-density lipoprotein (LDL), thereby reducing stroke risk. Other factors associated with increased stroke risk include obesity and physical inactivity. Obesity increases risk of high blood pressure, diabetes, and high cholesterol. Obesity is defined as a body mass index (BMI) greater than 30. BMI is calculated by weight (in kilograms) divided by height (in meters) squared. As BMI increases, so does stroke risk. In addition, several studies have shown an association between physical inactivity and stroke risk, with moderately active individuals having a 20 percent lower stroke risk compared to individuals with more limited physical activity. Treatment of stroke

The first step in treating stroke is rapid recognition of its symptoms and calling 911. After the emergency response system is activated, an ambulance will be dispatched to the stroke victim’s location. Research shows that patients who arrive at the emergency center by ambulance get treated faster than those who arrive by private vehicle. After arrival at an emergency center, a person experiencing a stroke will have a brain scan, which can distinguish an ischemic

National Stroke Association:

Minnesota Department of Health: chp/cvh/ stroke from a hemorrhagic stroke. If the symptoms are due to an ischemic stroke, the clot-busting drug TPA may be used. If the stroke is hemorrhagic, other tests may be performed to determine the cause of the bleeding and prevent worsening of the stroke. After the first phase of stroke treatment, every effort is made to lower the risk of future stroke. This includes identification and treatment of stroke risk factors, such as high blood pressure, smoking, diabetes, and high cholesterol. For ischemic strokes, other blood-thinning medications may be added to reduce the risk of future stroke. In summary, stroke is often treatable and preventable. It is critical to recognize the warning signs of stroke and call 911 immediately in order to receive time-sensitive treatments that are proven to reduce the chance of disability. Strategies for prevention of stroke focus on controlling risk factors such as high blood pressure, smoking, diabetes, and high cholesterol. Additional strategies that may lower stroke risk include frequent exercise, maintaining a healthy weight, and a healthy diet with fruits, vegetables, and low amounts of salt and saturated fats. Matthew Ostrander, MD, is a stroke specialist at Park Nicollet Clinic Methodist Hospital, in St. Louis Park.

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Multiple sclerosis from page 21

Beta interferons (Avonex, Betaseron/Extavia, Rebif) work on one part of the immune system while glatiramer acetate (Copaxone) works on another. Natalizumab (Tysabri) works on still another and the newest medication, fingolimod (Gilenya), works on still another part. Mitoxantrone (Novantrone) is a potent general immune suppressant also approved for use in MS patients. The most recent additions—natalizumab and fingolimod—appear to have significant potential toxicity, opening the immune system to opportunistic infections that can be disabling or even fatal. However, they also come with increased convenience. Natalizumab is a monthly intravenous medication and fingolimod is the first approved oral treatment for the disease. Deciding which medications to use and when has become quite complicated, as interactions may linger and raise the potential for problems over time. Thus, making an appropriate selection requires a familiarity with each medication, using appropriate caution to weigh risks versus benefits. Nonetheless, having a variety of treatments for a disease as variable as MS allows for potentially better control of the disease process for more people than in the past. This clearly provides a significant measure of hope to decrease disability over time. The pipeline for other treatments affecting other parts of the immune system is full and studies are very promising. All will come with risks and will require intelligent analysis of the risk/benefit ratio. The science is complicated enough, but when added to the “cost/benefit/risk” analysis of managed-care organizations, it becomes very difficult.

Symptom management has also gained in the recent past with newer medications for bladder control, uncontrolled emotional outbursts (Nuedexta), and improved ambulation (Ampyra). Ampyra (dalfampridine) has been a particularly important addition for those with the common symptom of walking difficulty. Managing patients with MS continues to be done on an individual basis. A team of professionals is often necessary for efficient and effective treatment. The team includes physicians, nurses, physical therapists, occupational therapists, psychologists, social workers, nurse practitioners, physician assistants, and many others. Randall T. Schapiro, MD, FAAN, is the founder of the Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology and president of the Schapiro Multiple Sclerosis Advisory Group in Eagle, Colo. A clinical professor of neurology at the University of Minnesota for more than 35 years, he is retired from practice but continues to work and consult for a variety of organizations, including the National MS Society.

Managing the symptoms of MS remains the backbone of treatment.

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Young-onset Alzheimer’s disease


n Elaine’s first visit to my office, I was struck by to me. Together, we completed a careful work-up of her the way she carried herself. Tall and confident, symptoms that included an interview with family memshe chose her words deliberately. With a masbers, review of her medical records, a neurological examter’s degree in organizational development and years of ination, blood tests, brain scans, and tests to measure her experience helping companies achieve their goals, she had memory and other cognitive abilities. When the results a strong reputation as a successful business consultant. came back, the diagnosis was sobering: In recent months, however, young-onset Alzheimer’s disease. something had changed: She felt Elaine was only 57. anxious before meetings, had Early diagnosis Conventional image doesn’t trouble organizing her thoughts always apply helps patients, and getting ideas down on There are many myths about paper, and struggled to keep up families Alzheimer’s disease. One of the with her work. She noticed she biggest is that it develops only late in was spending more time searchBy Terry R. life, in a person’s 70s or 80s. When ing for papers around the office Barclay, PhD most people think of Alzheimer’s disand had to be very diligent ease, they think of very elderly, very about taking notes, or she might not disabled people living in nursing accomplish everything she needed to do. homes. Indeed, while most people Coworkers and family members noticed with the disease are older, Alzheithat she wasn’t herself. As our conversation mer’s can strike some people as unfolded, Elaine became tearful as she said, young as their 30s. “My husband thinks I’m having trouble with Young-onset Alzheimer’s disease, also my memory. I didn’t notice it at first, but now called early-onset Alzheimer’s disease, is a I’m worried, too.” form of dementia diagnosed before the age A neurologist with expertise in disorders that of 65. The words used to describe the diagaffect memory and thinking had referred Elaine





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Resources nosis refer to the age of onset and not the stage of dementia. In other words, youngonset individuals can be in any stage of dementia when they receive a diagnosis, with symptoms from mild to severe, but they are under 65 when the condition first emerges. The National Institute on Aging estimates that 5 percent to 10 percent of the 5.4 million Americans living with Alzheimer’s disease are under the age of 65. This translates to 270,000 to 540,000 people with young-onset Alzheimer’s across the country and about 4,700 in Minnesota.

Minnesota leads the nation when it comes to advocating for more research funding, recommending better dementia training in medical schools, creating more young-onset community support programs, and helping local communities become dementia-competent. For more information about the state’s plan for Alzheimer’s, go to the website for the Alzheimer’s Association of Minnesota/North Dakota ( and click on “Prepare Minnesota for Alzheimer’s 2020.” The association also offers an array of resources for individuals with dementia and their families. Services include: • 24-hour information helpline (800-272-3900) • Support groups • Young-onset programs • Individualized needs assessments and connection to local resources • Referrals for legal and financial planning • Community and professional education

Symptoms Although expressed at an earlier age, the symptoms of young-onset Alzheimer’s disease are very similar to those seen in traditional Alzheimer’s. They can include: • Loss of recent memories severe enough to disrupt daily life • Repeating oneself in conversation • Misplacing things at home or work with more regularity • Trouble organizing and expressing thoughts • Difficulty finding words or names of objects, places, or people • Problems concentrating or multi-tasking • Diminished ability to interpret symbols or understand directions • Difficulty planning or solving problems • Limited or poor judgment

• Family and friends can learn how to provide support when it is needed Despite these benefits, people may need to be assertive when asking their doctor for a proper workup of their symptoms or a referral to a specialist. Although most doctors should be able to do an adequate workup for Alzheimer’s disease, some do not feel comfortable doing so, particularly when individuals present with symptoms at an early age. Even with proper medical attention, obtaining an accurate diagnosis of young-onset Alzheimer’s can be a long and frustrating process. Alzheimer’s is not routineYoung-onset Alzheimer’s disease to page 31

• Becoming disoriented or lost in familiar places • Confusion • Withdrawal from social activities • Poor motivation, apathy, depression, anxiety, irritability, or other mood changes Not all people with young-onset Alzheimer’s disease experience symptoms in the same order or progress through the illness at the same speed. Scientists are still learning about individual factors that contribute to how symptoms are expressed and what can be done to slow their progression. Researchers have found that young-onset Alzheimer’s often runs in families and many people with the disease have a parent, grandparent, or other relative who also developed the condition at a young age. Several genes have been linked to the young-onset form of the disease. These genes are different from the gene that can increase one’s risk of developing Alzheimer’s disease in general.

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Diagnosis There are many reasons why people are encouraged to talk with their doctors about memory loss and pursue an appropriate diagnosis as early as possible. An early diagnosis means: • Medication treatments may be more effective • There is more time to plan for the future • Needs can be anticipated and crises minimized • Patients and families have earlier access to valuable support services • There are opportunities to enroll in clinical trials for new, investigational medications • The home environment can be optimized to promote independence JUNE 2011 MINNESOTA HEALTH CARE NEWS



Pain and palliative care for children Live as long as possible ach year more than 38,000 as well as possible children in the U.S. die from Pediatric pain and palliative care is sometimes a terminal medical condition. misconstrued as simply hospice care for Most of those children suffer unnechildren. While hospice-type care is cessarily because many physicians part of what we do, pediatric palliamight be afraid to use powerful tive care provides solace for children drugs on children, or they are Control of pain of all ages who are suffering from simply not yet trained in pain and and related a life-threatening or life-limiting palliative care. condition—regardless of whether Central to any team entrusted symptoms helps curative treatments succeed or to help a child heal, pediatric pain children endure fail. With an integrated pain and palliative care is part of a holistreatment and palliative care program, tic, interdisciplinary approach to care is provided within a caring for child and family—no By Stefan J. continuum, from acute, matter what the diagnosis. Friedrichsdorf, MD chronic, or complex pain The pain and palliative care and symptom management, to program at Children’s Hospitals and Clinics of Minnesota palliative care and hospice care. is one of only a few centers of its kind in the country. Our Palliative care is not care team is trained specifically to treat and relieve chil“giving up.� Most often, it dren’s pain and other distressing symptoms, such as nauinvolves the management of sea, fatigue, and loss of appetite, to name a few. Just as pain and distressing sympimportantly, we work with family members to help them toms in children, helping them ease their child’s pain and, if their child passes away, we to endure their treatment and to heal. help families though the process of grief and bereavement.




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Five myths about pediatric palliative care In 2003, our team cared for a boy who was being treated for leukemia. As a result of his treatment, he developed a very rare side effect—chronic pain that sidelined him from living his adolescent years properly. Despite daily medicaMyth: Pediatric palliative care is only for children with cancer. tions, the boy became severely disabled by the pain. He Fact: Cancer causes only a about a quarter of the deaths in children due to life-limiting conditions. needed a wheelchair and missed many days of school. His family turned to our department for help. Myth: Pediatric palliative care starts when curative treatment stops and/or when a child is close to dying, and ends at death. After his evaluation, the boy had regular appointments Fact: Pediatric palliative care starts at diagnosis of life-threatening or lifeat our pediatric pain clinic, where he learned to use alternalimiting disease and continues through the trajectory of the illness. tive therapies like biofeedback and self-hypnosis. The team Myth: Parents have to choose between “fighting for a cure” or “giving up.” also prescribed physical therapy, including aquatic therapy. Fact: Life-saving care and excellent symptom relief can and should be provid- By the time school began in the fall of 2007, he was able to ed simultaneously. start his freshman year of high school without a wheelchair Myth: Pediatric palliative care is the same as “doing nothing.” and without strong pain medications. Now, he rarely misses Fact: Even when the underlying condition cannot be cured, sophisticated a day of school, can enjoy his favorite activities, and is no medical technology can be used to control symptoms and improve a child’s longer limited by his pain. quality of life. Another child, who died at the age of 12, described his care this way: “Palliative care no longer means helping children These treatments usually occur in the hospital or clinic setdie well, it means helping children and their families to live well and ting, but for children with life-limiting conditions, treatment is then, when the time is certain, to help them die gently.” moved to the home when appropriate. Myth: The death of a child in the U.S. is a rare event. Fact: Fifty thousand or more children die each year, more than 15,000 of them due to a life-limiting disease.

The goal of a pediatric pain and palliative care program should be to help a child live as long as possible as well as possible. One baby boy our program cared for was diagnosed with a genetic disorder soon after birth that had and would cause major developmental defects in many of his organs. Sadly, most children diagnosed with this particular defect die within the first month of life. After his diagnosis, both his parents and his providers noticed that he was almost constantly in some form of discomfort, often writhing in pain. The boy’s doctors suggested a pain medication, but his parents resisted, fearing it would interfere with their child’s ability to eat and grow stronger so that he could have needed heart surgery. Still, in order to meet certain developmental milestones, the boy needed to have his pain properly managed. After agreeing to the medication, his parents felt comforted by the fact that, when their son did die a few months later, he was not suffering. In fact, when children’s distressing symptoms are aggressively managed—commonly with opioids and/or benzodiazepines (sedatives)—they live longer and with a better quality of life. No needless pain There are few things worse than watching one’s child in pain. At Children’s, we have a philosophy of “no needless pain.” Often, this includes the use of drugs, usually in combination with non-pharmacological therapies such as massage or music therapy, hypnosis, or acupuncture. Distraction is also an oft-used technique: During a painful procedure, we may encourage the child to blow bubbles or we may use guided imagery to focus the mind on something positive. Even something as simple as touch can bring comfort. Drugs and other techniques are often used in concert, but each child’s case is unique. The one aspect of pain and palliative care that is universal is that treatment is most successful when approached early and aggressively. Helping children and families live well Pain is a complex and unique experience that affects all areas of a child’s life. Whether the pain is caused by a chronic illness or has an unknown cause, it can affect relationships, school, family life, and everyday responsibilities.

One care team When patients and families have their first visit with the pain and palliative care team in our clinic at Children’s, they are greeted by an interdisciplinary team that usually includes a nurse, social worker, physical therapist, psychologist, and pediatric pain and palliative care specialist. This active and total approach to care embraces physical, emotional, social, and spiritual elements to healing. By including the Pain and palliative care for children to page 30

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Treating even the mildest kinds of pain helps children heal faster.

Pain and palliative care for children from page 29

whole team on the initial interview, the family does not have to repeat the pain narrative, which is often a painful and taxing experience, more than once. At the end of the evaluation, the team meets and makes recommendations for immediate follow-up with the same evaluating providers and with other pediatric specialty areas as needed. No matter the recommendation, the next steps focus on the enhancement of the quality of life for the child and support for the family. This may include the management of distressing symptoms, provision of respite, and care.

Limited access to a necessary service

tive care for adults is fast becoming the norm, access to and availability of palliative care for the majority of children with life-threatening conditions is still lacking. In the U.S. and in most other countries worldwide, the vast majority of infants, children, and teenagers with advanced illness who are near the end of life do not have access to interdisciplinary pediatric palliative care services either in their community or at the nearest hospital. State-of-the-art management of pain and distressing symptoms in children in the 21st century requires the integration of pharmacology, medical interventions, and rehabilitation with complementary nonpharmacological and supportive therapies. At Children’s, this is part of the day-to-day activity and we see patients from all areas, not just those suffering from cancer or terminal illness. We have found that treating even the mildest kinds of pain helps children heal faster. Our positive experience in pediatric palliative care was recently supported in a randomized, controlled trial involving adults. This 2010 groundbreaking study published in the New England Journal of Medicine found that adults with advanced lung cancer who received palliative care in addition to standard cancer therapy not only had a better quality of life and less depression, but also lived longer than those who received only standard cancer therapy.

Only a few generations ago, it was not uncommon for infants and children to die. Today, thankfully, mortality rates in the developed world have plummeted. While comprehensive, state-of-the-art pallia-

Stefan J. Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children’s Hospitals and Clinics of Minnesota.

Reaching out In order to advance the state of the art of pain and palliative care, Children’s volunteered in 2003 to develop a centralized pediatric resource center for the state of Minnesota in conjunction with its hospice and palliative care programs. The Children’s Institute for Pain and Palliative Care offers training, consultation, and technical assistance to providers in Minnesota, Wisconsin, North and South Dakota, and Iowa. To date, the institute has trained more than 1,000 providers and has hosted practicum visitors from many U.S. states and from overseas.


Health Care Consumer May survey results... Association



23.3% 20 10

7.0% Excellent Very good Average


10 2.3% 0


I know all of them

I know most of them

I know some of them

I know one or two

2.3% I do not know any


20.9% 18.6% 16.3% 14.0%

10 5 0

11.6% 10

7.0% None









40 30.2%




30 25

25.6% 23.3%

20 14.0%

15 10 5





4 or more

4 or more

5. How satisfied are you with the communication between your physicians around the medical management of your cardiovascular health?

Percentage of total responses

Percentage of total responses

Percentage of total responses








Not good






Percentage of total responses

Percentage of total responses



4. How many preventive measures (diet, exercise, etc.) are you doing specifically because they are known to prevent cardiovascular disease?




41.9% 40


3. How well do you know the symptoms of stroke?

2. How many daily medications do you take to treat cardiovascular conditions?

1. How would you describe your cardiovascular health?

Each month members of the Minnesota Health Care Consumer Association are invited to participate in a survey that measures opinions around topics that affect our health care delivery system. There is no charge to join the association, and everyone is invited. For more information please visit We are pleased to present the results of the May survey.


0.0% Very satisfied


Does not Unsatisfied Very apply unsatisfied

Young-onset Alzheimer’s disease from page 27

ly expected in younger individuals. When a person younger than 65 goes to the doctor with memory loss and other hallmark symptoms of the disease, his or her physician may not even think to consider Alzheimer’s as a possibility. In many cases, early symptoms are attributed instead to stress, menopause, “normal aging,” or mood problems. As in Elaine’s case, a diagnostic workup typically involves a physical or neurological exam, lab tests, mental status testing (objective assessment of memory and thinking), and, in some cases, a brain scan such as a CT or MRI. When a patient presents earlier in the course of the disease or has a more complex medical history, neuropsychological testing, functional exams, or other tests may also be needed.

Treatment Although there currently is no cure for Alzheimer’s disease, available treatments are typically most effective when the disease is identified early. The FDA has approved five medications—donepezil, galantamine, rivastigmine, tacrine, and memantine—to help people with Alzheimer’s disease maintain their mental functioning and manage symptoms. However, the manufacturer no longer actively markets tacrine because of significant side effects, and memantine is approved only for moderate to severe Alzheimer’s. The three remaining drugs have traditionally been used to treat all stages of the disease. While none of the medications stop or reverse the underlying progression of the illness, they do offer benefits to many people, particularly in the first 12 to 18 months of treatment. Other medications, such as those to improve mood and sleep, may also be used. In addition to medication treatment, lifestyle changes are frequently recommended. Creating more structure and routine in daily activities can help people stay focused. Reducing alcohol use, maintaining a healthy diet, seeing the doctor regularly, increasing physical activity and exercise, staying socially engaged, and finding new ways to keep mentally stimulated are often advised.

Unique challenges Those with young-onset Alzheimer’s disease face distinct challenges. Many are still working when their symptoms emerge. Due to the nature of the condition, changes in their job performance or behavior may not be understood or addressed. Those who are fired or who leave their jobs before obtaining a diagnosis may never be offered employer assistance that would otherwise be provided to someone with a recognized disability. Job loss can, of course, also mean loss of insurance coverage and tremendous financial burdens. Many individuals with young-onset Alzheimer’s are still raising families. A spouse may need to increase work hours to help support the household. In addition, since most services for people with dementia are designed for older individuals, those with young onset often do not feel comfortable in traditional community programs. Support groups and adult day programs that specifically target younger people and families may be available only in larger, urban areas.

Obtaining an accurate diagnosis of young-onset Alzheimer’s can be a long and frustrating process.

On the upside, last year the federal government approved young-onset Alzheimer’s disease as a condition that qualifies for faster approval of Social Security disability benefits.

One year later Back at the office, it’s time for Elaine’s one-year follow-up exam. Since her diagnosis, she has been taking medications to treat her memory loss and anxiety. She’s less anxious and believes the medication has helped to stabilize her memory. Elaine also tells me that she has made several lifestyle changes based on recommendations from our initial evaluation. Elaine decided to retire from her consulting business and is now able to spend more time with family and friends. She was approved for Social Security disability benefits, which provide the family with much-needed financial support. She has been staying as active as possible and has developed a routine that involves regular exercise, mental stimulation, and social activities. She and her family are also involved in several support groups and other programs through the Alzheimer’s Association and spend time volunteering at fundraising and advocacy events to increase awareness of the disease. Terry R. Barclay, PhD, is a neuropsychologist who specializes in aging and dementia. He sees patients at the HealthPartners Center for Dementia and Alzheimer’s Care and maintains a private practice in Edina.

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ore and more, we are hearing about the role of self-management in achieving and maintaining good health. While care professionals can help us identify our health conditions, prescribe treatments, and teach us about diseases and conditions, it is selfmanagement—things we do on a day-to-day basis to take care of ourselves—that can have major impact on our health and quality of life. Studies have established that if adults are physically active on a regular basis, have healthy eating habits, avoid tobacco, and take steps to

Take charge, live well You’re the boss

By Pamela Van Zyl York, MPH, PhD, RD, LN

minimize their risk of falls and other injuries, they can live longer, healthier lives. We also know that when one must change behavior to adopt and maintain those healthy choices, it is not easy. Whether you need to maintain your health or address ongoing conditions like diabetes, osteoporosis, heart disease, arthritis, asthma, or high blood pressure, you are making choices that affect your wellbeing. We are all engaged in self-management. The choice is whether to be active managers who work at making healthy choices or to be passive managers who take what comes. Active self-managers recognize that their decisions about exercise, healthy eating, stress management, and using the health care system play a crucial role in maintaining or improving their health. For those with ongoing conditions such as diabetes, heart disease, osteoporosis, arthritis, or high blood pressure, these daily decisions play a central role in determining the course of their condition and their quality of life. Further, those who succeed are more likely to stay out of the hospital and may need fewer medications and other treatments, saving them money.

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Getting started

Finding classes to support healthy choices

Many people find that taking part with others in programs to help them make healthy decisions gives them added support they need. The Minnesota Department of Health and the Minnesota Board on Aging have developed a website with information about key programs that research has shown to be effective. The site includes a calendar of offerings across the state. These programs serve the needs of adults of all ages who want to make or maintain healthy changes. The site includes information about the Stanford Chronic Disease SelfManagement Program offered in Minnesota as Living Well With Chronic Conditions; Better Choices, Better Health; Living In Balance; and Pathways to Better Health. Also included are A Matter of Balance, a falls prevention program; Healthy Eating for Successful Living; and the Arthritis Foundation Exercise Programs. Investigate the possibilities at

A good first step if you want to be an active self-manager is to evaluate your current lifestyle choices. Are you meeting your goals for exercise? Are your eating habits largely healthy? Do you keep stress under control? Do you see your health care provider when you should to keep tabs on your health status, keep your immunizations up to date, get the health screening tests you need, and manage any ongoing health conditions you have? Ask yourself if you need to work on any of these areas. If the answer is yes, pick something to start with. Some people can make big changes or make a number of changes at the same time, but most of us are more sucQuestions? Email them to cessful making more gradual change and working on one thing at a time. Also directed by trained peer leaders, A Matter of Balance Once you know what you want to change, identify what you provides information and support for participants who wish to need to do to accomplish your goal. If you need to be more reduce their risk of falls and their fear of falling. It also includes physically active, what kind of activities do you want to do? a 30-minute exercise program that helps participants build strength If you’re going to use that elliptical machine in the baseand balance. ment that has been serving as out-of-season clothes The behavior-change strategies used in both of these programs storage, your first step may be to unearth the are based on a model developed at Stanford University. Much of the equipment. Or it may be to get the bike out of key research and development of community programs that give the garage and cleaned up. If you’ve tried these participants the essential skills to be effective self-managers has been strategies before and they haven’t worked as done at Stanford’s Patient Education Research Center over the past well as you’d like, think about what 20 years. The Chronic Disease Self-Management Program (CDSMP) you could do differently. You may is the most widely implemented of their programs in the U.S. and need to find a buddy to ride or The choice is Take charge, live well to page 34 walk with who will help you stay whether to be on track. Maybe you need to active managers arrange your daily schedule differently so you can work in a regular who work at time to use the exercise equipment. making healthy Or you might want to consider a Have you subscribed to Minnesota’s best source of community exercise program that choices, or to be health care information? To receive your personal gives you a chance to meet new copy of Minnesota Health Care News each month, passive managers people. People with ongoing health complete and return the form below. conditions such as arthritis may who take what need to learn more about their concomes. dition and what type of exercise will be best for them. To improve your eating habits, you may need to learn more about food labels so that you can make good choices. You might look for a healthy cooking class or a new cookbook. If it’s stress management you need, you might learn more about meditation or yoga as a first step.

Don’t miss an issue...

Community programs

Participating in community programs is often an effective way to get helpful information, learn new skills, and benefit from the support and accountability that come from a group. A number of programs offered in Minnesota communities have been shown to be effective in helping people live healthier lives. The Healthy Eating for Successful Living program helps participants identify the changes they would like to make and increases their skills in reading labels and identifying healthy food choices and setting and achieving goals. The small group classes and peer leaders offer support in finding solutions to everyday challenges.

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Take charge, live well from page 33

Don Clarkʼs story

Don Clark lives with diabetes, high blood pressure, high cholesterol, sleep apnea, and asthma. He first became involved with CDSMP by participating in the Living in Balance course at the Native American Community Clinic in Minneapolis. After completing the course, Don trained to become a program leader. He is now one of two Native American trainers in Minnesota. He continues to use what he has learned on a daily basis. His hemoglobin A1c has dropped from 7.8 to 6.8, his total cholesterol is 119, his blood pressure averages 130/72, and his asthma is under control.

worldwide. In Minnesota communities, it is offered as Living Well With Chronic Conditions; Better Choices, Better Health; The Chronic Disease Pathways to Better Self-Management Health; or Living in Balance. Small groups Program has been widely implemented meet with trained peer leaders each week for six weeks and in the U.S. and learn and practice strategies and skills that can help them manage worldwide. their condition. Participants support each other and become proficient at setting and achieving action plans and problem-solving while learning about techniques like guided imagery and progressive muscle relaxation. Other topics include exercise, using medication appropriately, making treatment decisions, healthy eating, and communicating effectively with your health care team. Studies show that participants increase their physical activity, have more energy, and experience less pain, fatigue, and depression. They have increased confidence in being able to manage their health and better partnerships with their health care providers. Longer-term evaluation has shown decreases in hospitalization and health care costs.



Care coordination

Many health care organizations are doing more to help their patients be active self-managers. If you have ongoing health conditions, you may have the opportunity to work with a care coordinator who can help you coordinate your health care visits, track your health status, and provide you with information about your condition and about community resources that can be helpful. Some clinics offer community programs such as Living Well With Chronic Conditions at their clinic site or connect people with programs in their community. Changing health habits can seem overwhelming. Often, as with all those New Year’s resolutions from years past, we give up. Approaching your goals in a step-by-step fashion, taking small steps, and finding the people and programs who can support you can help you succeed as a self-manager this time. Pamela Van Zyl York, MPH, PhD, RD, LN, is arthritis program director in the Division of Health Promotion and Chronic Disease, Minnesota Department of Health.

A philosophy of caring is good. A history of it is better. Caring. It would be nice if you could see it, like an amenity. Or tour it, like an apartment. But you can’t. All we can do is give you our definition: Caring is believing that everyone is someone who deserves to feel loved and valued, and be treated with dignity. That’s not just something we say. As the nation’s largest not-forprofit provider of senior care and services, it’s what we’ve been doing for almost 90 years.

To learn more about our communities in Minnesota, call 1-888-GSS-CARE.

The Evangelical Lutheran Good Samaritan Society provides housing and services to qualified individuals without regard to race, color, religion, sex, disability, familial status, national origin or other protected statuses according to federal, state and local laws. All faiths or beliefs are welcome. Copyright © 2010 The Evangelical Lutheran Good Samaritan Society. All rights reserved. 10-G2016

break a vial habit

Model is for illustrative purposes only.

With FlexPen®, your patients aren’t limited by a vial and syringe. FlexPen® is a simple, patient-friendly insulin dosing option. And it’s available for the same copay as vial and syringe on most managed care plans.1* So, just add “FlexPen®” to your patients’ prescriptions and free both of you from the vial and syringe. For formulary access specific to your area, visit *Intended as a guide. Lower acquisition costs alone do not necessarily reflect a cost advantage in the outcome of the condition treated because there are other variables that affect relative costs. Formulary status is subject to change. Reference: 1. Data on file. Novo Nordisk Inc, Princeton, NJ.

FlexPen®, Levemir®, and NovoLog® are registered trademarks of Novo Nordisk A/S. © 2009 Novo Nordisk Inc. 139219

October 2009

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