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SAN FRANCISCO MEDICINE J O U R NA L O F T H E S A N F R A N C I S C O M E D I CA L S O C I E T Y

DEVELOPMENTAL DISABILITIES An Overview for Clinicians A Sixty-Year Overview of Developmental Disabilities in the U.S.

Diagnosing Genetic Causes How the Affordable Care Act Provides for Autism Discussing End-Of-Life Options

Plus: Soda Tax Town Hall Meeting

VOL. 87 NO. 3 April 2014


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IN THIS ISSUE

SAN FRANCISCO MEDICINE April 2014 Volume 87, Number 3

Developmental Disabilities FEATURE ARTICLES

MONTHLY COLUMNS

11 Developmental Disabilities in the U.S.: A Sixty-Year Overview Lucy Crain, MD, MPH, FAAP

4

Membership Matters

6

Ask the SFMS

9

President’s Message Lawrence Cheung, MD, FAAD, FASDS

15 Growing up with CHARGE: From the Not-So-Outside Looking In Susannah Kenley

16 Genetics and Disability: Diagnosing Genetic Causes of Developmental Disabilities Jay W. Ellison, MD, PhD 18 Where Are the Champions? Advancing Care for the Developmentally Disabled Mary Lou Breslin

20 Autism and the ACA: How the Affordable Care Act Provides for Autism Karen Fessel and Cecily Ruttenberg

25 Medical Community News 27

Public Health Report: What Do Zombies, Body Snatchers, and the Tobacco Industry have in Common? Tomás Aragón, MD, DrPH

30 In Memoriam: Nancy Thomson, MD 30 Upcoming Events

21 End-of-Life Conversations: Discussing Options with Developmentally Disabled Patients Meg McClaskey, MDiv, BCC

23 New Challenges, New Opportunities: Serving Adults with Complex Disabilities Clarissa Kripke, MD, FAAFP

OF INTEREST

26 SFMS Backs Proposed Soda Tax

SFMS Thanks Dr. Lucy Crain

The SFMS would like to thank Dr. Lucy Crain, longtime SFMS member and multi-term member of the Board of Directors, for her dedicated passion for advancing knowledge of developmental disabilities and for her assistance in assembling this issue of San Francisco Medicine. Editorial and Advertising Offices: 1003 A O’Reilly Ave. San Francisco, CA 94129 Phone: (415) 561-0850 e-mail: adenz@sfms.org Web: www.sfms.org Advertising information is available by request.

Welcome New Members

The SFMS would like to welcome the following members:

David E. Dallafior, MD | Emergency Medicine Rogelio S. Dawkins, MD | Emergency Medicine Corey Michael Long, MD | Emergency Medicine Yen Ngoc Quang, MD | Gastroenterology Kory David Stotesbery, DO | Child and Adolescent Psychiatry STUDENTS Rowen Jin Daniel Novinson


MEMBERSHIP MATTERS Activities and Actions of Interest to SFMS Members Become a Champion of Medicine, Participate in 4/22 Legislative Leadership Conference Join SFMS for the CMA Legislative Leadership Conference on April 22 in Sacramento. Members have the unique opportunity to participate in advocacy training and network with colleagues throughout California at this annual event. This year, to better facilitate meeting with legislators, the agenda has been restructured to provide members with both morning and afternoon appointments to meet with their elected representatives. The meetings are scheduled and coordinated by local county medical societies.   This event is offered at no cost to SFMS members. Plan to join more than 400 physicians, medical students and CMA Alliance members who will be coming to Sacramento to lobby their legislative leaders as champions for medicine and their patients.  Please email SFMS at membership@sfms.org or call (415) 561-0850 if you would like to attend this event.

SFMS Launches Covered California Resource Page for Physicians

California’s health benefit exchange, Covered California, is now in full swing. To help local physicians understand the complexities of the exchange plans, SFMS has launched a new Covered California resource page for physicians and their staff about plan contracting, patient enrollment and eligibility, grace periods, SHOP and more! Please visit http://www.sfms. org/ForPhysicians/CoveredCalifornia.aspx for details. Additionally, SFMS/CMA members and their staff have free one-on-one access to practice management experts through the CMA reimbursement helpline at (888) 401-5911 or economicservices@cmanet.org. CMA staff can provide assistance on any questions about the exchange, other reimbursement issues, contracting or general practice management issues.

Windows XP May No Longer be HIPAA Compliant

If you use Windows XP in your practice, you soon may become noncompliant with the Health Insurance Portability and Accountability Act (HIPAA). Microsoft is discontinuing support for the operating system April 8, placing patient information within this system at risk. All security updates, bug fixes, patches and call center troubleshooting support will be suspended next month, so the continued use of the system may expose patients’ electronic protected health information (e-PHI) to risks. Visit http://bit. ly/1fFXH9M for suggested actions and options available to maintain HIPAA compliance. 4

SFMS Members Meet with Supervisor David Chiu San Francisco Supervisor David Chiu visited the SFMS for a lively discussion of current medical issues and political perspectives. Supervisor Chiu has been an advocate of medicine, collaborating with the medical society on a variety of issues including the soda tax, e-cigarette regulation, and preserving access to care and health safety nets in San Francisco. Sponsored by the SFMS Political Action Committee, the event raised funds for his candidacy for the California State Legislature to represent San Francisco’s 17th Assembly District. 

Practices Required to Use CMS 1500 Claim Form Effective April 1

As of April 1, 2014, CMS will only accept CMS 1500 claim form (version 02/12 OMB control number 0938-1197) for submitting paper claims to Medicare. The revised form adds the following functionality: Indicators for differentiating between ICD-9 and ICD-10 diagnosis codes; Expansion of the number of possible diagnosis codes to 12; Qualifiers to identify the following provider roles (on item 17): Ordering, Referring, Supervising. Physicians should note that while the new claim form includes fields for ICD-10 codes in preparation for the transition in October 2014, practices should continue to submit only ICD-9 codes until notified otherwise by payors.

New Federal Bill Introduced To Curb Medical Malpractice Risk, Save Money

Saving Lives, Saving Costs Act (HR 4106) has been introduced in the House by California Rep. Ami Bera (D-Elk Grove), a physician, and Rep. Andy Barr (R-Ken), a lawyer. HR 4016 is aimed at reducing the risk of medical malpractice lawsuits, improving patient care, preventing insurance fraud and saving money—all through use of evidence-based medical practices. The proposed law would provide added protection from lawsuits—called “a safe harbor,” for physicians who adhere to specific evidence-based clinical practice guidelines. It applies to providers a physician is supervising, as well.

SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


SF Supervisors Approve New Restrictions on E-Cigarettes On March 18, the San Francisco Board of Supervisors unanimously voted to apply the same regulations that govern regular tobacco products to electronic cigarettes. The decision means that e-cigarettes will be banned from use in most public locations, retailers will have to obtain a special permit to sell the devices and e-cigarettes cannot be sold where tobacco sales are banned, such as pharmacies. SFMS has been instrumental in advocating for the regulation of ecigarettes. The San Francisco Examiner published an op-ed from SFMS President Lawrence Cheung, MD on March 5, 2014, reprinted below. Regulate e-cigarettes: Electronic cigarettes are very much in need of more regulations, in order to minimize marketing and access to them by kids and to reduce exposure to their vapors for everybody. The San Francisco Medical Society has had a policy supporting such regulations for years, and a growing number of other medical and health organizations—and cities—are agreeing that e-cigarettes can pose health risks. Contrary to heavy lobbying by e-cig and tobacco interests, the proposed San Francisco regulations pose no burden to those who might actually use e-cigs to help quit tobacco smoking, and we commend the San Francisco supervisors who are proposing stricter, healthier regulations. —Dr. Lawrence Cheung, MD

Update Your Practice Information for the SFMS Online & Print Pictorial Directory Spotlight your practice and expand your referral base with an updated member profile! With the SFMS online Physician Finder and print directory, physician members have the opportunity to promote their practices on customizable individual web profiles and connect with a larger patient and referral base. SFMS have sent out email and mail notifications to all physician members currently engaged in the practice of medicine to update contact information for the directory. If you did not have your picture in the 2013 directory, or if your information is outdated, we encourage you to update your directory entry by contacting SFMS at ayoung@ sfms.org or (415) 561-0850 extension 200.

Promote Your Practice with the SFMS Directory

If you would like to reach 1,000 health care professionals in San Francisco, please consider placing an ad in the 2014 SFMS Member Directory. Members are eligible for an exclusive discount on quarter-page vertical ad placements. Advertising rates start at $395. To obtain the ad rate and contract agreement, contact Ariel Young at ayoung@sfms.org or (415) 561-0850 extension 200.

Double Honors for Longtime SFMS Member

David E. Smith, MD, founder of the Haight Ashbury Free Medical Clinic and an SFMS member for over forty years, is being doubly honored for his life’s legacy. Dr. Smith is a national icon and medical doctor specializing in addiction medicine, new research strategies in the management of substance use disorders, and proper prescribing practices for physicians. Just out of UCSF medical school In 1967, Dr. Smith founded the Haight Ashbury Free Medical Clinic and five years later was instrumental in the creation of Rock Medicine. On April 12th, his contributions will be further recognized as he receives the Peter E. Haas Public Service Award from UC Berkeley. Photo circa 1967. WWW.SFMS.ORG

April 2014 Volume 87, Number 3 Editor Gordon Fung, MD, PhD Managing Editor Amanda Denz, MA Copy Editor Mary VanClay

EDITORIAL BOARD Editor Gordon Fung, MD, PhD Stephen Askin, MD Erica Goode, MD, MPH Toni Brayer, MD Shieva Khayam-Bashi, MD Linda Hawes Clever, MD Arthur Lyons, MD John Maa, MD Chunbo Cai, MD

SFMS OFFICERS President Lawrence Cheung, MD President-Elect Roger S. Eng, MD Secretary Richard A. Podolin, MD Treasurer Man-Kit Leung, MD Immediate Past President Shannon UdovicConstant, MD SFMS STAFF Executive Director and CEO Mary Lou Licwinko, JD, MHSA Associate Executive Director, Public Health and Education Steve Heilig, MPH Associate Executive Director, Membership and Marketing Jessica Kuo, MBA Director of Administration Posi Lyon Membership Assistant Ariel Young BOARD OF DIRECTORS Term: Jan 2014-Dec 2016 Benjamin C.K. Lau, MD Ingrid T. Lim, MD Keith E. Loring, MD Ryan Padrez, MD Adam Schickedanz, MD Rachel H.C. Shu, MD Paul J. Turek, MD

Term: Jan 2012-Dec 2014 William J. Black, MD Andrew F. Calman, MD John Maa, MD Todd A. May, MD Kimberly L. Newell, MD William T. Prey, MD Steven H. Fugaro, MD

Term: Jan 2013-Dec 2015 Charles E. Binkley, MD Gary L. Chan, MD Katherine E. Herz, MD David R. Pating, MD Cynthia A. Point, MD Lisa W. Tang, MD Joseph Woo, MD CMA Trustee Shannon Udovic-Constant, MD AMA Delegate Robert J. Margolin, MD AMA Alternate Gordon L. Fung, MD

APRIL 2014 SAN FRANCISCO MEDICINE

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PAYOR REIMBURSEMENTS HEALTH CARE

PROFESSIONAL DEVELOPMENT

DISPUTES

PHYSICIAN

SFMS

Understanding Grace Periods and Network Plans California’s health benefit exchange, Covered California, is now in full swing. With sign-ups expected to grow by the end of the 2014 open enrollment period, it is critical that physicians and their staff know what to expect.

What is the “Grace Period”?

Federal law allows Covered California enrollees who receive financial subsidies to keep their health insurance for three months after they have stopped paying their premiums. This is known as the “federal grace period.”

How will I know who gets the three-month grace period?

Insurance ID cards for exchange enrollees will have the Covered California logo on them, but generally they will not indicate whether the enrollee is subsidized. While some Blue Shield ID cards indicate “subsidy” in the product name, not all do so. SFMS does not recommend that practices rely on that wording on the card to determine which patients are subsidized.

How will I know whether an exchange patient is in month two or three of the grace period?

Practices should verify an exchange patient’s eligibility, ideally on the date of service or as near the time of service as

6

KEEPING

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CODING

MEDICAL RECORDS

FINANCIAL MANAGEMENT

BILLING

& IMPLEMENTATION

ASK THE

CONTRACT NEGOTIATIONS

EHR SELECTION

PRACTICE MANAGEMENT

possible. If the patient is in month two or three of the grace period, the health plan should indicate that coverage is inactive. Within 15 days of entering month two of the grace period, the plan is required to notify the primary care provider (PCP) of record and any physicians who have submitted claims on the patient within the previous two months. March 3, 2014, was the first possible date when a practice may have encountered a patient in month two or three of the grace period. For patients who paid their premium for January and have not yet paid their February premium, March was the first month when their coverage status may have changed to inactive, suspended, pending, etc. It is extremely important that practices are verifying eligibility on all exchange patients.

What are my options if a patient presents with inactive coverage because of the grace period? Practices should have put policies in place prior to March 2014. For example, practices may require a patient to sign an agreement that they will be responsible for all unpaid charges and may request a payment up front. A practice should also consider its own circumstances and, for instance, to what extent applying its current policies on treating uninsured or self-pay patients may be suitable.

What about the products sold outside of Covered California that still use the exchange networks?

Practices must review patient ID cards and eligibility information closely to identify whether the practice is in or out of network for that particular plan. Every plan offered in the exchange must also be offered outside of the exchange, using the same provider network.

SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


Confusion around these off-exchange products, also called “mirror” products, has resulted in a number of practices unknowingly seeing patients out of network for products that use an exchange provider network, as these ID cards will not have the Covered California logo. For example, Blue Shield products bought off of the exchange but using the exchange network will list one of the following product names on the patient ID card: Basic PPO/EPO, Enhanced PPO/EPO, Get Covered PPO/EPO, Preferred PPO/EPO, or Ultimate PPO/EPO. Anthem Blue Cross products bought off of the exchange but using the exchange network will list “Pathway” on the card. If you see these product names on the ID card, it indicates that the patient only has access to the exchange network. If the Anthem Blue Cross card is not available, practices may see the following product names on the eligibility verification screen: Core DirectAccess, Essential DirectAccess, Preferred DirectAccess, Premier Direct/Access, Catastrophic GuidedAccess.

How can I avoid patient confusion and frustration related to my participation status at the time of service? With all of the new exchange plans added to the mix, it is no longer satisfactory to simply accept “I have Blue Shield” as an indication of whether the patient can be seen in network. It is important, when scheduling, to determine whether the physician is indeed in the patient’s network. The first step is to ensure that front office staff has a clear understanding of the physician’s participation status as displayed on the plan websites. Second, upon scheduling, request that the patient fax or e-mail a copy of the front and back of their ID card to the practice. This will allow the practice to clearly identify whether they are in the patient’s network and also to verify patient eligibility before the visit and communicate with the patient before the visit. Taking these steps could help avoid out-of-network costs for and frustration from patients when they are faced with a larger-than-expected bill.

Anthem Blue Cross, Blue Shield, and Health Net Provide New Information for Physicians About Covered California Products Three major managed care payors offering coverage through Covered California have provided additional information to their contracted providers on their exchange/mirror products. Together, Health Net, Anthem Blue Cross and Blue Shield of California, account for approximately 75% of enrollment in Covered California products to date. The notices, sent to physicians within the past few weeks, were co-branded with Covered California and contain additional information to help providers navigate the exchange. Links to the actual notices can be found at http://bit.ly/OFPYCH.

Payor

Date Notice Sent

Information Provided

Anthem Blue Cross

March 17

FAQs, breakdown of products sold by county, reported provider network size, plan name guide to help practices identify their exchange/ mirror product patients.

Blue Shield

March 14

Clarification on exchange/mirror products, plan summary that includes copayment, coinsurance and deductible information, sample ID cards, answers to frequently asked questions, a map indicating which product types are offered by county.

Health Net

March 7

Information on exchange/mirror products, product types offered in different regions and what information is on patient ID cards.

To help local physicians understand the complexities of the exchange plans, SFMS has launched a new Covered California resource page for physicians and their staff at http://www.sfms.org/ForPhysicians/CoveredCalifornia.aspx. WWW.SFMS.ORG

APRIL 2014 SAN FRANCISCO MEDICINE

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PRESIDENT’S MESSAGE Lawrence Cheung, MD, FAAD, FASDS

Infections and Injections: Continuing the Deregulation of Needles and Syringes Californians currently can purchase needles and syringes for personal use without a physician’s prescription. However, access to safe, clean needles and syringes may once again become impossible for many Californians, since the statute (SB 1159) legalizing this on a statewide basis will sunset on January 1, 2015. Assembly Member Phil Ting has introduced the Safe Syringe Access Act, AB 1743, that will provide a permanent statewide solution allowing persons older than eighteen years to be able to purchase syringes and needles for personal use. As physicians, we know that sharing contaminated needles contributes to the spread of HIV and hepatitis C. Needle exchange programs decrease the prevalence of needle sharing and reduce the incidences of blood-borne diseases. Indeed, a study from the American Journal of Public Health shows that metropolitan areas with needle exchange programs have a significantly lower incidence of HIV infection compared to areas without needle exchange (6.7 percent versus 13.8 percent). Understandably, some people may have concerns about a needle exchange program’s impact on its community. The California Department of Public Health (CDPH) examined the impact of SB 1159 in a report published in 2010, analyzing data five years after implementation of the needle exchange programs. The report shows that needle sharing decreased in counties that allowed needle exchange compared to those that did not allow needle exchange. In addition, there was no increase in the levels of dirty, discarded syringes in the vicinity of the pharmacies or high-risk neighborhoods in counties with needle exchange programs. Moreover, the incidences of needle-stick injuries among law enforcement officers were not statistically different between the two regions. There was also no increase in the crime rates after implementation of the needle exchange programs. Most important, the rate of intravenous drug use did not increase with needle exchange programs and, in fact, according to surveys of publicly funded HIV test sites, actually decreased. These findings are in line with other states that have needle exchange programs. The San Francisco Medical Society has much history and leadership on this issue. When evidence of HIV transmission first surfaced in the mid-1980s, some “underground” syringe exchange programs began distributing needles, syringes, and bleach to sterilize used paraphernalia. Not only was this borderline illegal but medical and public health experts were divided. An informal poll of such experts indicated that our local addiction-medicine clinicians and researchers were worried that the practice might be seen as enabling and endorsing drug abuse, but, over time, the evidence built that this was not so. In fact, recognition grew that such programs could serve as ways to garner the trust of addicts and provide them with drug education and options for treatment. SFMS then brought a policy resolution to the California Medical Association (CMA), with details on how such programs would be most effective: WWW.SFMS.ORG

CMA supports needle and syringe exchange programs to reduce transmission of HIV and other blood-borne diseases among intravenous drug users (IVDUs) with the following caveats. Since we are concerned that such a program might incorrectly be perceived to be a complete solution, which it is not, CMA believes needle and syringe exchange programs are likely to be effective only when part of a comprehensive approach that includes: 1. Priority on treatment programs for opiate and stimulant users 2. Outreach for hard-to-reach addicts to include referral for treatment, training on safer injection techniques, and training on safer sexual practices 3. Provision and evaluation of sterile injection equipment 4. Voluntary (confidential and anonymous) HIV testing, counseling, and medical follow-up for infected persons and their sexual partners 5. Confidential counseling, testing, and appropriate treatment programs in jails and prisons 6. Social services to support families of HIV-infected drug users 7. Evaluation of all components 8. Community involvement in decisions as to how the program will be carried out These “caveats” remain as good guidelines for such efforts. Subsequently, the Institute of Medicine endorsed needle exchange efforts, and when more evidence built that injection equipment could be “deregulated” to attain the same ends, the SFMS brought another resolution, also adopted by the CMA: That CMA supports the deregulation of syringe and needle sale in California, and the sale of syringes and needles without prescription at licensed pharmacies, with proper disposal instructions and/or mechanisms, and supports any legislation which proposes such a change. The establishment of needle exchange programs today is in many ways similar to Surgeon General C. Everett Koop’s promotion of condom use during the peak of the HIV epidemic. We have the tools to limit the spread of blood-borne diseases; we just need the political will to use these tools. The San Francisco Medical Society Board of Directors unanimously endorsed Assembly Member Ting’s bill, and I hope that you will join us with your support. Let us become the forty-ninth state in the union to adopt a statewide needle exchange program. Let us not be the last. See www.sfms.org for footnotes. APRIL 2014 SAN FRANCISCO MEDICINE

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SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


Developmental Disabilities

DEVELOPMENTAL DISABILITIES IN THE U.S. A Sixty-Year Overview Lucy Crain, MD, MPH, FAAP There was no special education when I grew up in the 1950s in small-town Kentucky. As in most

communities in the U.S., children (and adults) with physical, emotional, or intellectual disabilities (then called “mental retardation”) either were cared for by family or sent to the state “homes” for children and adults with disabilities. I loved accompanying my physician father on house calls, but I was puzzled when I met children with disabilities who were my age but had never attended school. Daddy explained that the schools didn’t have special teachers or vans or ramps to enable them to access the classrooms in wheelchairs (often homemade). In the early 1900s, there were a few schools and hospitals in large cities for those with blindness or deafness. Shriner’s Hospitals and Easter Seals had programs for individuals with physical disabilities due to epidemics of polio and tuberculosis, and passage of the Social Security Act (SSA) in 1935 promoted many of those services. However, those were not designed for people with developmental disabilities. In the mid-1960s, civil rights activism and legislation began to change that. The Education for All Handicapped Children Act (EHA) was signed in 1965 (PL-94-142 and later updated to become IDEA), followed by Section 504 of SSA, the “Rehabilitation Act.” The EHA required students with disabilities to be integrated into “least-restrictive environments” to enable “mainstreaming, normalization,” and social interaction with normal classmates. However, many states were still sending children and adults to residential institutions and not complying with the mandate for a “free public education” promised by EHA. In families where parents worked outside the home, there were few alternatives. Awareness emerged that people with disabilities were being discriminated against. This was dramatically heightened in 1972 by The Last Great Disgrace, produced by thenrookie reporter Geraldo Rivera. This was an unauthorized televised documentary on Willowbrook State School, the largest residential institution in the U.S. for people with intellectual disabilities. The graphic depiction of its “horrific conditions” shocked the nation.1 Willowbrook had opened in 1947 as a state home for people with developmental disabilities in Staten Island, New York, and grew to a peak resident population of 6,000 by the 1960s. Robert F. Kennedy, during an onsite press conference in 1965, referred to the facility as a “snake pit,” but Willowbrook did not close until forced to do so by a consent judgment in federal court in 1987. It had become “a warehouse” to remove people with disabilities from the public eye.2 Despite directives in the Willowbrook consent decree to promote special education services, community nursing WWW.SFMS.ORG

and therapy services, and in-home support, development of needed services progressed slowly. California was no less complicit in the “warehousing” practice, with a peak of more than 5,000 residents at Sonoma State Development Center-SDC (previously Sonoma State Hospital until losing its JCAH accreditation). The California Home for the Care and Training of Feeble-Minded Children was originally founded in 1884 in Santa Clara; it was moved to Eldridge in Sonoma County in 1909 and renamed the Sonoma State Home. Now called a development center, SDC still houses 460 residents with severe developmental disabilities and court-mandated institutionalization, and it remains the third-largest employer in Sonoma County. California’s 1969 Lanterman Developmental Disabilities Act (updated 2014) reiterated the rights of individuals with developmental disabilities to have free public education in the “least-restrictive environment” and established the system of twenty-one California Regional Centers to find or create those resources in the community. Plans to decrease the number of SDC residents and eventually close the institution are ongoing. Concomitantly, legislative regulations, self-advocacy, parent advocacy, and civil rights and disability rights advocacy after the Americans with Disabilities Act (ADA) in 1990 have been complementary efforts. The Olmstead Decision of 1999 held that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title 11 of ADA. These laws have fostered a wealth of in-home and communitybased services that only partially meet the needs of a growing population of individuals with developmental disabilities who await inclusion and integration into the community at large.

So why has it taken so long for us to get to this point? Why do we still have medical offices, hospitals, and clinics without wheelchair access or accessible examination tables? Why do we have a ten-to-fifteen-minute health-maintenance visit authorized for patients whose special needs will take more than twenty-five minutes to place them on the exam table? Lack of resources, lack of consistent political prioritization and funding, lack of community and health insurance support, and lack of reinforcement and oversight all come to mind. Trended projections predict ongoing growth of numbers of people of all ages with autism spectrum disorders and other developmental disabilities. It is estimated

Continued on page 13 . . .

APRIL 2014 SAN FRANCISCO MEDICINE

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Developmental Disabilities in the U.S. Continued from page 11 . . . that 700,000 adults older than 65 years of age will be living with ASD in the next twenty years in the U.S.5 This indicates urgent and continuing need for prioritization, funding, development, and expansion of housing, services, and appropriate training for health care for this population who now live in the community. The house of medicine needs to be keenly aware of these trends. We need to ensure adequate professional training and understanding, appropriately equipped medical homes, and resources to better serve the health care needs of the aging population of people with disabilities who reside in our communities. Lucy Crain, MD, is a clinical professor of pediatrics at Stanford University and UCSF clinical professor emerita. She is the founding chair for the Annual Developmental Disabilites: Update for Health Professionals conference that takes place each spring at UCSF. She is also a longtime member of the SFMS and has served several terms on the board of directors.

References 1. Willowbrook:The Last Great Disgrace. www.youtube.com/ 2. Quote from the late Dr. Rhona Rudolph, advocate and medical director of Golden Gate Regional Center, 1972. 3. Strauss DJ et al. Comparative mortality of people with developmental disabilities in institutions and in the community. AJMR. 1996; 101-26-49. 4. SSDI/SSD: ssa.gov/disability. 5. Kats D et al. Prevalence of select clinical problems in older adults with autism and intellectual disorders. J Neurodevel Disorders. 2013; 5:27. www.jneurodevdisorders.com/content 5/1/27.

Origin of the term “handicapped”: In days of Dickens’s London, chimney sweeps were little boys living in poverty. The boy who was chosen by lot to have the least desirable job of being lowered into the chimney was usually the smallest and often one with physical or intellectual challenges. Lots or “pass” slips were drawn from a cap and the last to reach into the cap for a slip was left with his empty hand in the cap, or “handicapped.” In the U.S., children were often used for uncompensated and unsafe labor, despite attempts by child labor advocates. Finally, the advocates appealed via the Society for Prevention of Cruelty to Animals to approach legislators to implement the first child labor regulations. This led to the formation of a Society for Prevention of Cruelty to Children and then in 1912 to the Children’s Bureau, which was responsible for identifying the need for special services for children with disabilities and special health care needs. The Children’s Bureau was active until retired by block grants and Title V. As noted above, educational legislation and regulations emanated from this groundwork and constituted at least fifty more years of steady work toward rights for children and adults with disabilities. WWW.SFMS.ORG

Select Sentinel Events and Developmental Disabilities Legislation and Regulations 1874 Society for the Prevention of Cruelty to Animals assists founding of Society for the Prevention of Cruelty to Children

1893 Minnesota enacts state program for handicapped children

1912 Congressional establishment of Children’s Bureau (predecessor of MCHB)

1935 Social Security Act signed and Title V implemented, initiating federal-state partnerships

1954 Brown v Board of Education ends public education discrimination based on race

1960 Newborn screening begins for PKU metabolic/genetic screening era with increasing emphasis on preventive services 1965 PL 89-97 Medicare and Medicaid enacted

1965 Education for all Handicapped Children Act (EHA), PL 94-142

1969 Lanterman Developmental Disablities Act and Lanterman-Petris-Short (mental health) Act of California are founding regulations for regional center system 1972 Willowbrook: The Last Great Disgrace1

1973 Section 504, SSA Rehabilitation Act prevents discrimination among agencies receiving federal funds; expanded and amended for elderly, blind, and disabled 1981 Conversion of Title V to HRSA-MCH Block Grants

1981 SSA Title XIX Section 1915 State ICF-MR waiver for HCBSHome- and Community-Based Services

1984 SSA and SSDI: Social Security and Supplemental Security Income: Government sources of services and eligibility criteria for supplemental income for people with disabilities4

1987 Surgeon General Koop’s report on chilren with special health care needs identified significantly increased health care needs and chronic medical conditions among the population of individuals with cognitive and physical disabilities, which supported Maternal and Child Health Block Grants (title V of SSA) and greatly expanded Medicaid and budget reform; adults with developmental and other disabilities can apply for supplemental income from SSDI, which requires eligibility determination4 1990 Idea (Individuals with Disabilities Education Act) replac-

es PL 94-142 (age 6-22) and PL 99-457 (age 3-6) individualized program plans

1990 Katie Beckett case and birth of Family Voices: Parent Advocacy

1990 Americans with Disabilities Act: Promotion of full inclusion and introduction of self-advocacy

1999 Olmstead decision: Self-advocacy movement realized APRIL 2014 SAN FRANCISCO MEDICINE

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Small town care has big benefits. With some of the most competitive benefits packages available, becoming a rural-based physician with the Veteran’s Health Administration (VHA) is the change of pace you’ve been looking for. From creating stronger relationships with your patients to having more

free time to pursue your own life interests, a career with VHA gives you endless professional and personal opportunities with the advantage of having access to the largest, most technologically advanced integrated health care system in the United States. But

most importantly, you have the chance to be a driving force behind providing Veterans with the world-class health care benefits they deserve.

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U.S. Department of Veterans Affairs Veterans Health Administration


Developmental Disabilities

GROWING UP WITH CHARGE From the Not-So-Outside Looking In Susannah Kenley My sister Laura was born with CHARGE syndrome. CHARGE syndrome for Laura means that she was born with coloboma and is legally blind. She was also born with a heart defect, is profoundly deaf, and has developmental disabilities. When Laura was only two, she had her first open-heart surgery; she had a second open-heart surgery when she was thirteen. Laura has been a fighter her whole life. Growing up she was in physical therapy classes working on her motor skills, balance, and tactile defensiveness, and in special education classes working on her communication and life skills. Despite her disabilities, Laura now lives in her own apartment with assistance from the ARC, and she has her own community of friends and staff. She has amazing orientation and mobility skills considering her vision impairment, and she is a great lover of chocolate and fine cheeses. Most amazingly, Laura recently overcame ovarian cancer. Laura never gives up. She is determined and strong-willed, but she would not be where she is today without the unrelenting work of our parents and her doctors, educators, and the ARC. Growing up as Laura’s older sister hasn’t always been easy. Without laughter and a lot of support from my family and friends, I hardly think I could have made it through. Tears and laughter, pain and happiness, embarrassment and pride, and thousands of other emotions have all been a part of the adventure of being Laura’s older sister. I don’t remember when Laura was born because I was only two when she became a part of our family. The memories I have of growing up with Laura involve a lot of me as her older sister trying to teach her things. I taught her how to swim (which to this day is one of her favorite activities!), and I taught her to give hugs and kisses (to this day still not one of her favorite activities!). But Laura, without the power of words and with very little sign, has taught me more than I could ever teach her. She has taught me not to sweat the small stuff (like having a nice dinner interrupted by your sister pushing all of the dinnerware off the table) and, most importantly, how to keep going when things get tough. Having Laura as my little sister has undoubtedly changed the way I look at myself and at the rest of the world. It has taught me how to look at the bigger picture, how to deal with the unexpected and the difficult, and how to appreciate the little things in life. On November 16, 2012, I was blessed with a son. Just a few weeks before my son’s birth, Laura was diagnosed with ovarian cancer. Laura has always been very thin, so when she all of a sudden developed a big belly, her staff became worried and reached out to my parents to tell them what was going on. Laura seemed relatively unaware of what was happening, but she did have a harder time getting around WWW.SFMS.ORG

and was quite bloated. After a thorough examination and a few fights with Laura’s insurance company, Laura’s nurse practitioner got her in for a CT scan. The scan revealed something on her ovary and the radiologist was concerned, so Laura was immediately referred to an ontological surgeon. After seeing her, the surgeon decided to do surgery right away. Once the surgeon found the mass on Laura’s ovary it was decided that she would need a complete hysterectomy. During the surgery they also removed 5 liters of fluid. “How could this happen?!” I thought when I met with my parents after her surgery and they shared the news with me. How could it be that Laura would be diagnosed with cancer just weeks before little Joaquin would be born? You would think that someone like Laura, who has fought for so much, would get a free pass on cancer. I couldn’t understand why this was happening to her, much less why it was happening when I was nine months pregnant. Immediately after hearing the news, I wanted to see Laura. I thought that seeing her, seeing the fight that she has inside her, would comfort me and show me that everything was going to get better. Unfortunately, when I went to see her the anesthesia and sedation medication that she had been given masked the fight that I know was inside her. Seeing her in a hospital bed again after fifteen years was too much. I got very emotional and as a result was banned from the hospital by my parents, who knew I needed to be healthy and calm for the delivery of my baby. I was upset and felt guilty that I couldn’t be there for Laura when she needed me, but I know that my family made the right decision by not allowing me to return to the hospital before Joaquin was born. Laura remained in the hospital for thirty-one days. But ten days in to her stay, we were blessed with what we still refer to as our “miracle day.” After a frustrating struggle to remove fluid from Laura’s abdomen and lungs, her doctors decided to give her a tracheotomy in hopes that they could then successfully drain the liquid and heal her pneumonia. On Friday, November 16, 2012, Laura had her tracheotomy and Joaquin was born. That day I knew we were going to see the end of Laura’s stay in the hospital. Today, Laura is fully recovered, back at her home and in good health. She has been cancer free for eighteen months. If Laura can overcome all that she has, surely we can overcome the adversities we face too. Susannah Kenley is a San Francisco native, a working mom, and a Licensing Consultant at Oracle.

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Developmental Disabilities

GENETICS AND DISABILITY Diagnosing Genetic Causes of Developmental Disabilities Jay W. Ellison, MD, PhD When parents realize that their child has a developmental disability, a number of feelings may surface: disappointment (even grief) over losing the “per-

fect” child they hoped for; fear about what the future holds in store; and, many times, frustration because a cause for the problem cannot be found. This frustration is often shared by physicians. We can pinpoint the cause of intellectual disability (ID) at most half the time, and even less often for autistic disorders. Nongenetic causes of ID account for a small proportion of cases and can include CNS infections, teratogens such as alcohol, and perinatal hypoxia. The most common single genetic cause is Down syndrome, which generally is readily recognizable in infancy. Other less common chromosomal abnormalities and rare inherited genetic disorders are also seen, an example of the latter being fragile X syndrome. In recent years a large number of rare genetic abnormalities have been discovered that can explain intellectual disability and autism, and new diagnostic tests are continually being developed to use in the clinic. This huge influx of new tests presents important questions for clinicians and families.

Why Is It Important to Know the Cause?

In many cases parents and physicians, in search of an explanation for a child’s developmental disability, pursue a number of clinical tests and evaluations, which can take years and cost a great deal of money. When this “diagnostic odyssey” fails to give an answer, some parents feel guilty, wondering if something they did or didn’t do is the reason for their child’s problems. Finding a genetic cause for a child’s developmental problems can help allay guilt as well as fear of the unknown for parents who want an answer. It can also provide accurate information about the chance of a similar problem in future children. Having a specific diagnosis can help families gain access to resources that may not be available with only a diagnosis of “developmental delay.” Another benefit to families is the ability to connect with other families dealing with the same or related conditions, through the many support groups and organizations that exist for specific disorders. For the clinician, a diagnosis of a known disorder can give prognostic information and help guide medical management. Families can know what to expect and anticipate potential future problems (medical or otherwise) that are known to be associated with the diagnosis.

What Genetic Tests Are Available?

Karyotype (microscopic examination of chromosomes), the former workhorse of genetic tests, is still widely used, though its role in assessing developmental disorders is be16

coming restricted to confirming suspected abnormalities such as Down syndrome and complex chromosomal rearrangements that are inferred by other methods. Biochemical screening for rare inborn errors of metabolism remains an important testing option, typically requiring special expertise for interpretation. The completion of the Human Genome Project in 2003, which produced a draft of the structure and location of all known protein-coding genes, has resulted in tremendous advances in the detection of genetic abnormalities in individuals with developmental disabilities and birth defects. The increased diagnostic capabilities are the result of the detailed knowledge we now have of human genes, as well as advances in DNA sequencing technology. Causal genes for many genetic disorders have been discovered, and clinical tests for those genes have rapidly followed. A huge impact on the diagnosis of developmental disorders has been the use of a technique called chromosomal microarray analysis (CMA). This method, also sometimes referred to as molecular karyotyping, provides a high-resolution view of the entire genome and detects missing or duplicated segments of the chromosomes that are too small to be seen microscopically. This technology has led to the identification of newly recognized causes of ID and autism, allowing us to make many more diagnoses than in the past. As useful as CMA is, most disease-causing genetic alterations are too small to be detected by this method and can only be found by directly determining the DNA sequence of individual genes. So-called next generation sequencing (NGS) methods make it feasible and relatively affordable to examine many genes of a patient in a single test. This has led to the emergence of large gene testing panels for specific clinical indications. Examples include a panel of 61 individual genes for autism, 145 genes for intellectual disability, and 1,100 genes for mitochondrial disorders. A number of clinical laboratories now offer sequencing of all the known protein-coding genes (numbering approximately 20,000). This approach, called whole exome sequencing (WES), is beginning to be used in cases where other testing avenues have failed to provide a diagnosis.

What Challenges and Difficulties Exist with Genetic Testing?

With the increasing uptake of microarray- and NGS-based genetic tests, there have been unavoidable growing pains. We are still learning about the natural genetic variation in humans, and these newer tests sometimes detect genetic abnormalities or variants that can be difficult to interpret. These abnormalities are referred to as variants of unknown significance

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(VOUS), and dealing with the uncertain nature of a test result that they produce can be difficult for physicians and families alike. In many instances, the association of the gene with a clinical problem is based on very small numbers of cases. And since we now know that all “normal” individuals carry a number of potentially harmful mutations, the clinical validity of some of the tests is open to question. In other words, does an identified abnormality really explain the patient’s problem, or is it one of the tolerated mutations? This question surfaces frequently in cases of VOUS, where often the abnormality has not been seen before or has been observed in small numbers of apparently unaffected individuals. A separate hurdle to overcome is finding the means to pay for these new tests. Large gene panels generally cost several thousand dollars, and whole exome studies cost even more. Third-party payers are increasingly demanding that tests provide clinical utility, in the form of changing medical management and/or improving clinical outcomes. The issue is illustrated by an editorial accompanying a 2011 review of genetic testing for global developmental delay. The title of the editorial was “So what? Does the test lead to improved health outcomes?” (Neurology, 77:1586-7). Laboratories that offer tests and the physicians who order them need to consider this viewpoint.

tation by the laboratory and misunderstanding by physicians and families. But there is no holding back the tide of new genetic tests, and we will only understand them better by using them and sharing our experiences through publishing in the medical literature or depositing information in accessible databases. How well insurers will reimburse for testing during the learning process is still a question, but demonstration of increased diagnostic yields and the benefits that a diagnosis provides should bring them around, especially as the cost of testing declines. In the very near future we can expect to find a genetic cause for the majority of congenital neurodevelopmental disabilities. Our increased understanding of the underlying genetic causes offers hope that improved therapeutic approaches will follow.

Jay W. Ellison trained at Caltech, UCSF, and UCLA and has more than twenty years of experience in clinical and molecular genetics. He has held positions at Mayo Clinic, where he was a clinical geneticist and director of the Medical Genetics Training Program, and at Signature Genomics (a genetic testing company), where he was medical director. He joined Kaiser Permanente in November 2013. 

How Should One Go about Genetic Testing?

With the ever-growing list of genetic testing options, it can be difficult to decide what test(s) to order for a given patient. The large menus of clinical labs can be tempting, but the more information obtained, the greater the chance of finding VOUS and results with uncertain clinical validity. Specialty organizations such as the American College of Medical Genetics and Genomics (ACMG) have published guidelines and recommendations for evaluating individuals with intellectual disability and autism, based on published studies that primarily report the diagnostic yields of different tests. These recommendations do not yet include the use of NGS-based tests such as large gene panels and WES, which seems appropriate until more is learned about their clinical validity and utility. Two tests that are recommended as a starting point for evaluating individuals with ID and autism are chromosomal microarray analysis and Fragile X testing. These tests are increasingly used by nongenetic specialists such as neurologists and developmental pediatricians. Further testing could include individual gene tests and biochemical testing based on the clinical features of the patient. It is also recommended that genetic professionals (genetic counselors and clinical geneticists) be involved in the testing process, so that results can be interpreted correctly and the implications of results can be explained to the families, in a setting where time is more readily available.

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What Comes Next?

Along with chromosomal microarray testing, large-scale DNA sequencing will no doubt become a standard clinical tool. We still need to learn more about the information these technologies provide, to reduce the potential for misinterpreWWW.SFMS.ORG

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Developmental Disabilities

WHERE ARE THE CHAMPIONS? Advancing Care for Developmentally Disabled Mary Lou Breslin My old friend Helen, a quadriplegic from childhood polio and a wheelchair user, was recently diagnosed with cancer. After the first round of tests,

her oncologist ordered an MRI to determine if the disease had spread. Helen, a retired university administrator, cannot transfer independently from her wheelchair to the exam table, and for safety and other reasons, she cannot be physically lifted. Instead, she needs to use a portable floor lift, which moves her safely from her wheelchair onto and off of the diagnostic or exam table. However, after telephoning four MRI facilities in an attempt to make an appointment, the oncologist’s scheduler reported that none had the required transfer equipment and therefore they could not conduct the test.1 Her experience may seem surprising, but it is still an everyday occurrence for many people with disabilities (PWDs). Between 40 million and 50 million people in the U.S. report some kind of disability. That number will grow significantly in the next thirty years as the baby boom generation enters late life, when the risk of disability is highest. A subgroup—about 14 percent of adults—have a disability that results in a complex activity limitation affecting self-care, participation in society, maintaining a household, and working.2 This group is especially important because they experience more health disparities than people with less significant impairments and barriers to care tend to have a greater impact on them. Yet research and extensive personal reports support the proposition that the health care system in the United States is not structured to provide safe, patient-centered care for this large group of PWDs. In a groundbreaking report, the U.S. Surgeon General acknowledged that physical, programmatic, and attitudinal barriers to health care for PWDs are commonplace in hospitals, clinics, diagnostic facilities, and practitioners’ offices of all sizes throughout the country. Georges Benjamin, executive director of the American Public Health Association (APHA), also called attention to these systemic problems in 2012 when he said, “There are huge issues with health inequity . . . we have to plan proactively for inclusion. If we don’t, people with disabilities will be left behind.” Those of us who work for health care policy reform for PWDs agree with Dr. Benjamin. We are puzzled by the fact that both health care education and care delivery systems have lagged so far behind other social institutions in recognizing that PWDs face serious barriers to full and effective participation. Some of the barriers to comprehensive, quality health care are found in the physical environment—for example, cramped exam rooms, inaccessible bathrooms, and inaccessible equipment such as exam tables, weight scales, and imaging and other diagnostic equipment. A California study 18

reported, for example, that among more than 2,300 primary care practices, only 3.6 percent had accessible weight scales and only 8.4 percent had height-adjustable exam tables.3 Related research reveals that wheelchair users report almost never being weighed even though weight measurement is a critical metric for many types of health care, including diabetes management, determining anesthesia and prescription dosages, and ongoing health and fitness monitoring. My friend Helen eventually was weighed in preparation for getting the correct dose of chemotherapy. However, to accomplish this feat, it took several days of discussion and strategizing after we realized that her treatment facility, part of a large Bay Area health system, had no protocol for weighing a wheelchair user. Health care treatment decisions and outcomes are also affected when accommodations are not available. For example, sign language interpreters are crucial in certain clinical situations to ensure that deaf people and their providers understand one another’s communication. Similarly, people who are blind or have visual impairments might need printed materials made available in alternative, accessible formats, for reasons that are clinically obvious. For example, there is a high correlation between diabetes and vision loss, so people with visual impairments require these accommodations in order to follow treatment instructions and access nutritional and other self-care information. Other barriers to quality care stem from the fact that some clinicians are unaware of personal biases or disability misinformation that might affect their treatment and care decisions.

According to the Alliance for Disability in Health Care Education, an organization of medical school faculty, nursing school faculty, and other health care educators, health care providers without appropriate training tend to: • Underestimate the abilities of patients with disabilities • Significantly underestimate the quality of life of patients with disabilities • Minimize patients’ capacity to contribute to own care • Minimize the extent and importance of patients’ expertise in [their] own condition4

According to the IOM, the U.S. Surgeon General, the National Council on Disability, and other national thought leaders, disability literacy training is one of the most effective interventions for combating these deficiencies.5 However, even as cultural competency and awareness training focusing on gender, race, age, and ethnicity is becoming commonplace in health care education, disability is rarely included as a cultural literacy topic.6

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Taken together, these barriers can contribute to health care disparities for PWDs as compared to the general population. For example, PWDs are more likely to: • Experience difficulties or delays in getting the health care they need • Not have had an annual dental visit • Not have had a mammogram in the past two years • Not have had a Pap test within the past three years7

Barriers contribute to poor health outcomes. For example:

• Women with disabilities have higher death rates from breast cancer than women without disabilities.8 • People with disabilities die from lung cancer at higher rates than people who do not have disabilities.9 • Adults with disabilities have a 400 percent elevated risk of developing type II diabetes.10 • Of deaf people, 4.6 percent are infected with HIV/AIDS, four times the rate for the African-American population.11 • Three out of five people with serious mental illness die twenty-five years earlier than other individuals, from preventable, co-occurring chronic diseases.12

Even as population data reveals these health disparities, disability is still not yet widely recognized as a bona fide health disparities population for purposes of funding or program development.

But providing appropriate, effective health care for PWDs involves more than ramps and accessible exam tables. It is fundamentally about recognizing the uniqueness of the disability experience and how that can and should affect clinical decisions. Providing effective, appropriate care also requires accepting disability as a common variation of the human condition, not as something to fear or that necessarily requires fixing. In broader terms, though, the unanswered question remains: Where are our champions? Long-term, systemic solutions can only be achieved when leaders from within the myriad institutions that educate medical professionals, set policy, and deliver care agree with the need for reform and commit to making it happen. Advocates, analysts, and researchers have sounded the alarm. Now it’s time to act. So, against this backdrop, my friend Helen continues to receive cancer treatment. As more information about her condition became available, her clinician decided the MRI was not immediately necessary. However, Helen will need to have the test following the first course of treatment. It still remains to be seen, though, if one of the diagnostic facilities will accommodate her. For more information about access to health care for PWDs, go to Healthcare Stories at http://dredf.org/ healthcare-stories/. Mary Lou Breslin is Senior Policy Advisor for the Disability Rights Education and Defense Fund (DREDF). WWW.SFMS.ORG

References 1. U.S. Department of Justice. Access to Medical Care for Individuals with Mobility Disabilities. Washington, D.C. US DOJ, 2010. 2. Altman B and Bernstein A. U.S. Department of Health and Human Services, CDC National Center for Health Statistics. Disability and Health in the United States, 2001–2005. 2008. Retrieved from website http:// www.cdc.gov/nchs/data/misc/disability2001-2005.pdf. 3. Mudrick NR, Breslin ML, Liang M, Yee S. Physical accessibility in primary health care settings: Results from California onsite reviews. Disability and Health Journal. 2012; 3(4):253-261. 4. Havercamp SM. (Ohio State University Nisonger Center), Robey K. (Matheny Medical and Educational Center and UMDNJ – New Jersey Medical School), Smeltzer S (Villanova University College of Nursing). Approaches to Training Health Care Providers on Working with Patients with Disabilities. Webinar at AUCD. Retrieved from website: http://www.aucd.org/docs/Approaches to Training Healthcare Providers.pdf. 5. Robey KL, Minihan PM, Long-Bellil LM, Hahn JE, Reiss JG, Eddey GE. Teaching health care students about disability within a cultural competency context. Disability and Health Journal. 2013; 6:271-279. 6. Kirschner KL, Curry RH. Educating health care professionals to care for patients with disabilities. JAMA. 2009; 302(12):1334-1335. 7. Altman B, Bernstein A. U.S. Department of Health and Human Services, CDC National Center for Health Statistics. Disability and Health in the United States, 2001–2005. 2008. Retrieved from website: http://www.cdc.gov/nchs/data/misc/disability2001-2005.pdf. 8. Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. Retrieved from website: http://www.cdc.gov/features/BreastCancerDisabilities/. 9. Iezzoni LI. Eliminating health and health care disparities among the growing population of people with disabilities. Health Affairs. 2011; 30(10):1947-54. 10. U.S. Department of Health and Human Services, Healthy People 2020. Disability and Health. 2013. Retrieved from website: http://www.healthypeople.gov/2020/topicsobjectives2020/ nationalsnapshot.aspx?topicId=9. 11. Curtis S, Heaphy D. Disabilities and Disparities: Executive Summary. Disability Policy Consortium. 2009. 12. Association of University Centers on Disabilities. Letter to Kathleen Sebelius. Retrieved from website: http://www.aucd.org/ docs/policy/health_care/CLAS_StandardsDisabilityLetter%20 12011.pdf. Citing Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007.

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Developmental Disabilities

AUTISM AND THE ACA How the Affordable Care Act Provides for Autism Karen Fessel and Cecily Ruttenberg Autism families in California are relatively lucky. We live in one of just twenty-four states, plus Washington, D.C., that require the inclusion of autism benefits in health insurance policies sold on the newly opened Affordable Care Act (ACA) health exchanges. In the Golden State, the ACA means more than just affordable health insurance. It means a more comprehensive benefit option for many autism families. The most common form of health insurance for children with autism, covering approximately 45 percent of these kids, is private insurance, either through an employer or a self-pay plan, according to the 2009-2010 National Survey of Children with Special Health Care Needs. However, not all employersponsored or self-pay plans provide autism benefits, nor do they legally have to. Specifically, some private plans do not cover the evidence-based therapy applied behavioral analysis (ABA), which is considered the gold standard of autism therapies. Even though California has an Autism Health Insurance Mandate, it does not apply to self-funded or employer-sponsored plans. Plans sold on the Covered California ACA exchange, however, do cover ABA. It’s the law! California is one of the nation’s twenty-four forward-looking states that mandated ABA be included as an essential heath benefit in SB 946, authored by Senator Darrell Steinberg. This is a huge win for autism families. Depending upon medical necessity, insurance might cover up to forty hours per week of this therapy, which could make a tremendous difference in improving a child’s skills and abilities. Unfortunately, a critical glitch remains. One of the ACA’s biggest selling points has been that it helps low- and moderate-income families offset the cost of health insurance through premium tax credits. However—and here comes the glitch—if one family member has affordable coverage through work, their dependents are not eligible for subsidies on the exchange. As it stands now, if employer-sponsored insurance costs more than 9.5 percent of an individual’s take-home pay, and if that person earns less than 400 percent of the Federal Poverty Level, the federal government will help offset the cost of their family’s insurance plan in the form of a premium tax credit (whereby the government pays an exchange-certified health insurer directly). But if an employer-sponsored plan is affordable for the employee, but it is not affordable for the dependents, the glitch prohibits dependents from being allowed to purchase a subsidized plan on the exchange. Similarly, if an employer-sponsored plan is affordable for all family members but the plan does not meet the needs of a child with autism, subsidized plans are not available to this dependent, even if 20

the family earns less than 400 percent of the FPL. Advocates in the special-needs community are fighting this restriction, as it could make the difference in whether children with autism receive essential services. As of now, subsidized plans on the Covered California exchange are available to individuals or families that are presently uninsured or are moving from an unaffordable employer-based plan, and who make less than 400 percent of the FPL. Individuals who do not fit these criteria may still purchase a plan for their child on Covered California, just not with subsidies.

While all the plans sold on the Covered California exchange will provide autism benefits, parents choosing a plan should be sure to review which autism providers are in-network in a given plan. Some plans will have larger networks than others. We recommend that if families have a provider in mind that they really want, they should work backwards; ask the provider which insurance companies they accept and shop from those plans. Unfortunately, Medi-Cal families do not benefit from California’s autism insurance mandate. At the present time, MediCal does not fund ABA therapy. Autism advocacy groups are continuing to lobby government officials in hopes of changing this policy, especially given that Medicaid is the single largest funder of medical care for children with autism. Progress is underway! In late September, a federal appeals court upheld an order directing Florida’s Medicaid program to cover ABA therapy. We hope more states will follow suit.

Karen Fessel is the founder and executive director of the Autism Health Insurance Project (AHIP), a nonprofit organization that helps families and providers secure insurance coverage for interventions related to autism and similar conditions. Cecily Ruttenberg is the communications director for AHIP. Visit www.autismhealthinsurance.org/aca for more information on the Affordable Care Act and autism.

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Developmental Disabilities

END-OF-LIFE CONVERSATIONS Discussing Options with Developmentally Disabled Patients Meg McClaskey, MDiv, BCC “I never knew I had a choice!” Those are the words of a thirty-five-year-old woman named Clarita who zipped up to me in her motorized wheel chair. She spoke them very slowly and with a concentrated deliberation to get out each syllable. I had just given a presentation to more than 100 persons with intellectual and developmental disabilities (IDD), their loved ones, and their caregivers. Clarita, who knew I was relatively new to California, also let me know that “there are no red birds and no blinking bugs in California.” Clarita’s elderly mother was with her and we sat down for a moment to talk. We determined that Clarita’s mother had never been appointed as her conservator or guardian but had, over the years, made most of Clarita’s health care decisions as a physician-appointed surrogate at times when Clarita could not speak for herself. She took into account what she knew to be Clarita’s strong opinions whenever possible. They had not spoken about who would make health care decisions for Clarita should she be unable to speak for herself (as had been the case during a recent hospitalization due to dehydration) and if her mother was unavailable. They had also never really discussed in depth what the options were, or what Clarita’s preferences were, should she become seriously ill or have an irreversible condition. We talked for a long time, and I made a return visit to help Clarita and her mother have “the conversation” and document Clarita’s decisions in an advance directive. Advance care planning has been around since the early days of living wills. It became formalized with the enactment of the Patient Self-Determination Act in 1991 and the subsequent development of durable powers of attorney for health care and of advance directives. The SUPPORT Study done in 1995 showed that even with intervention by a specially trained nurse, few physicians knew their patient’s preferences for treatment at the end of life. There is little if any data available about the completion of advance directives among persons with IDD, but there is anecdotal evidence that “the conversation” is not happening. We know that in the general public, it is only in the last few years that we have seen real movement toward having the conversation. A myriad of organizations, TV programs, news stories, TED talks, and websites have emerged: Death Cafes, Death over Dinner, the Conversation Project, Dying Matters . . . the list goes on. The impetus seems to be to get people talking, to have conversations with loved ones about their preferences and wishes for end-of-life care, but their wishes also need to be documented! These initiatives seem to parallel the aging of the boomers, who have had to make end-of-life decisions for their parents and are now reflecting on the decisions their children or loved ones may have to make on their behalf in the not-so-distant future. The community of persons with IDD is also aging. MediWWW.SFMS.ORG

cal technologies have improved their quality of life, along with their life expectancy. The process of decision making is often very complex when these individuals become seriously ill. Emergency room physicians, hospitalists, and intensivists are meeting these persons with IDD away from their normal life settings (as they do with most of their patients). Just as a mistaken assumption can be made that an elderly person who presents as confused has dementia (when in fact they were teaching a class that morning), so too, mistaken assumptions can easily be made about the quality of life of a person with IDD and their observed “limited” ability to communicate. Persons with IDD have the same rights as the general public unless they have been deemed incompetent by a court or lacking in decision-making capacity by a physician. A problem can occur when a person who presents with limited or no ability to speak may have full decisional capacity. They may need an assisted communication device, or someone who knows them, to facilitate the communication. We should not and must not make assumptions about a person’s decisional capacity based on our own perceptions about their ability to communicate. In a hospital setting, there is often not time to have the conversation. Decisions may need to be made quickly and so, for persons with IDD, the need to have had the conversation before the advent of serious illness becomes even more important than for the average person in our society. There are many tools and resources available for nearly any level of ability or reading level, for type of disability, and for specific populations to assist in having “the conversation.” These wonderful tools help facilitate conversations, asking the right questions and documenting decisions. In the end, however, the most important thing we can do for anyone is normalize conversations about serious illness and death. All too often persons with IDD are assumed to not understand death, or to lack the ability to make complex decisions. Perhaps for a very small percentage, that is true. But for the vast majority, it becomes our responsibility to take the time, to find ways to communicate, to explain and illustrate. It is uncertain how many people in the general public understand typical medical jargon. I cannot tell you how many times I have had patients or families—well-educated people— say, “What did he just say?” or “What does ____ mean?” after the doctor has told them their diagnosis. During an exercise I use when teaching counselors and care providers how to have the conversation, I ask them to define terms like PEG, CPR, anaphylaxis, and asystole. The answers are astounding. Few courses in medical school teach a physician in training to speak to patients in common parlance, and the ones that do have done so only recently. More seasoned physicians are likely to have this ability

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End-of-Life Conversations Continued from the previous page . . . only because they have made a commitment to find better ways communicate with their patients. Another critical issue is the number of articles appearing in medical journals, in hospice and palliative care publications, and on websites that describe things like ”feed tubes” as increasing suffering and the chance of aspiration or creating other problems. This may well be true, may be backed by significant studies, and may be substantiated by evidence-based practice, but it is only true for persons who are seriously ill or dying. PEG use may in fact be permanent or long-term and life sustaining for a person with IDD. This is to say nothing of the very old, still lingering, and long-since disproven belief that persons with IDD do not feel pain! Having the conversation is not a one-time event. The questions we ask and the discussions we have need to be with all people, but especially and particularly for those with IDD. They must be tailored to, customized, and personalized for the person who is in front of us. To quote Arthur Miller’s powerful statement in Death of a Salesman, “Attention must be finally paid to such a person.” Persons with IDD deserve the same rights and should always be accorded the same dignity as anyone else. We must avoid stereotypes of any kind and learn to meet our patients where they are. We must begin the conversation with persons with IDD, and the conversation must be revisited, as it should be with anyone, over and over again. We need to learn to be humble, and listen to what a person, any person, has to say. “I never knew I had a choice.” We need to help persons with intellectual and developmental disabilities know they have choices, give voice to their choices, and document them. Meg McClaskey is a clinical medical ethicist and a board certified chaplain. She is the executive director of Diverse Perspectives Ethics Consultation, an organization dedicated to working with people who are often marginalized in the health care system. She provides in-service and staff trainings, program and policy development, as well as institutional and individual case consultation. For more information please visit www.diverseperspectives.com.

Resources 1. California Developmental Services. Thinking Ahead, My Way, My Choice, My Life at the End (booklet and videos). http://www. dds.ca.gov/ConsumerCorner/ThinkingAhead.cfm. 2. U.S. Department of Health and Human Services. Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities. http://aspe.hhs.gov/daltcp/reports/2007/ adacp.htm. 3. CDC Advance Care Planning—Selected Resources for the Public (extensive resource list). http://www.cdc.gov/aging/pdf/ acp-resources-public.pdf. 4. Twin Cities Public Television—Minnesota’s“HonoringChoices.” http://www.honoringchoices.org/videostories/#!developmental%20 disabilities. 5. Friedman Sandra L and Help David T. eds. End of Life: Care for Children and Adults with Intellectual and Developmental Disabilities. American Association on Intellectual and Developmental Disabilities. Washington, D.C. 2010. 22

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SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


Developmental Disabilities

NEW CHALLENGES, NEW OPPORTUNITIES Serving Adults with Complex Disabilities Until the late 1970s, few people with complex disabilities lived in the community. Today, most individuals

with disabilities such as cerebral palsy, autism, and intellectual disability have never resided in an institution. Improvements in medical care, community services, and economic opportunity have resulted in a dramatically increased life expectancy for this population. It now approaches that of the general population. This means that many health professionals have little experience and training in serving people with complex disabilities. People with disabilities have been primarily covered by public health insurance such as Medicaid and Medicare. However, as we implement the Affordable Care Act, more people will also have access to private health insurance. Therefore, a wider range of doctors will serve people with disabilities in our practices. Health care professionals have a lot of influence over the lives of people with disabilities. Clinicians and health plans control access to medical care. We also control access to education, employment, transportation, housing, services, supports, assistive equipment, and public benefits. In many situations, health care providers even control the opportunity to make decisions and to form and maintain relationships. Physicians influence research questions, funding, and methods. Our research drives public policy. Public policy is shifting to fund more long-term care and therapies through health care insurance. This gives doctors even more control. With that power comes the responsibility to listen to people with disabilities, partner with them, and ensure that we are helping our patients exert control and choice over their own lives, to live independently, and to fully participate in and contribute to their communities. State and federal civil rights legislation requires health care professionals to provide access to our services without regard to ability. Currently, people with complex disabilities have great difficulty accessing health care. For example, a 2012 study of 2,389 primary care provider facilities found that only 3.6 percent of California primary care practices have an accessible weight scale.1,2 To reduce health disparities and meet our obligation to our patients, we need to educate ourselves, invest, and prepare. Access to health care is more than just ensuring physical access. It is also ensuring programmatic, communication, financial, sensory, and attitudinal access. The U.S. Department of Justice has issued standards for providing physical access in health care settings. This document includes standards for exam rooms, equipment, and training to ensure safe transfers.3 The physical environment can also be improved for people with sensory sensitivities. For example, high-contrast lighting, strobe lights, alarms, scents, and crowded waiting areas can trigger sensory sensitivities. Reducing programmatic barriers to health care can include longer appointment times, home visits, coordinating multiple procedures in the operating room, care navigation, WWW.SFMS.ORG

Clarissa Kripke, MD, FAAFP

reduced waiting times, improving continuity of care, and coordinating care with interprofessional teams. Health care providers should focus particular attention to programmatic barriers during care transitions. Reducing communication barriers can include speaking directly to our patients rather than to their caregivers; giving enough time to respond; respecting different communication styles, especially for those who do not use speech; providing information in different formats such as large type, pictures, or videos, as well as braille; and providing sign language interpretation, plain language explanations, and communication aides such as letter or picture choice boards. Reducing financial barriers includes policy work to improve reimbursement rates for higher-need populations that match the cost of providing quality care. Financial barriers to care can also be reduced by improving opportunities for employment for people with disabilities. People with disabilities have many skills that are useful in delivering health care. Reducing attitudinal barriers includes training ourselves and our staff in disability cultural competence, presuming our patients are competent, soliciting patient input through patient advisory panels and surveys, hiring people with disabilities to work in our offices, challenging dehumanizing language or attitudes when we encounter them, and collaborating with our patient’s supporters. The lives of people with disabilities have improved dramatically over the past few decades. There is still much work to be done to eliminate health disparities. Health care professionals can accelerate progress by including goals to improve access in practice redesign and quality improvement initiatives. To assist, the Office of Developmental Disability (http://ODPC.ucsf.edu) has many materials on its website to assist clinicians in training staff and providing care. Clarissa Kripke, MD, is an associate clinical professor and director of the Office of Developmental Primary Care in the Department of Family and Community Medicine at the University of California, San Francisco.

References 1. Mudrick NR, Breslin ML, Liang M, and Yee S. Physical accessibility in primary health care settings: Results from California on-site reviews. Disability and Health Journal. 2012; 3,4:253-261. 2. Lagu T et al. Access to subspecialty care for patients with mobility impairment. Annals of Internal Medicine. 2013; 158:441– 446. 3. U.S. Department of Justice. Access to medical care for individuals with mobility disabilities. Available at http://www.ada. gov/medcare_mobility_ta/medcare_ta.htm. Accessed 2/28/14. APRIL 2014 SAN FRANCISCO MEDICINE

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MEDICAL COMMUNITY NEWS UCSF

Michael Gropper, MD

SFVAMC

Diana Nicoll, MD, PhD, MPA

SUTTER PACIFIC MEDICAL FOUNDATION Bill Black, MD, PhD

Sensory processing disorders (SPD) are more prevalent than autism and as common as attention deficit hyperactivity disorder, yet the condition receives far less attention, partly because it’s never been recognized as a distinct disease. In a groundbreaking new study from UCSF, researchers have found that children affected with SPD have quantifiable differences in brain structure, for the first time showing a biological basis for their neurodevelopmental challenges. SPD affects up to 16 percent of school-aged children who commonly struggle with a wide range of symptoms including hypersensitivity to sound, sight, and touch; poor fine motor skills; and distractibility to irrelevant sensory information. Some SPD children find the sound of a vacuum or blender excruciating, while others have more upstream challenges with bringing together the vision and touch information necessary to write. Furthermore, a sound that one day is an irritant can the next day be sought out. The disease can be baffling for parents and a source of controversy for clinicians. “They are called the ‘out of sync’ kids. Their language is good, but they seem to have trouble with just about everything else, especially emotional regulation and distraction. In the real world, they’re just less able to process information efficiently, and they get left out and bullied,” says Elysa Marco, MD, a child neurologist and neuroscientist who treats affected children at UCSF and led the recent neuroimaging study with postdoctoral fellow Julia Owen, PhD, and senior pediatric neuroradiologist Pratik Mukherjee, MD, PhD. Marco and her colleagues in the UCSF Sensory Processing Group have an ongoing treatment trial using a kid-friendly, engaging computer training intervention for challenges with suppressing distracting stimuli and visual motor control. They are also pioneering cutting-edge genetic investigations and functional brain imaging studies for affected individuals. 24

Traumatic brain injury (TBI), especially due to improvised explosive devices, is a signature injury of the Afghanistan and Iraq wars. The blast waves alone from these devices can cause TBI, even without obvious other acute injury. Since 2000, more than 275,000 veterans have suffered some level of TBI. One of the disabilities that can be caused by TBI is posttraumatic epilepsy, and the severity of the original TBI correlates with the risk of developing epilepsy. Fifty percent of those suffering severe TBI with penetrating injury will develop epilepsy. Although the majority of posttraumatic epilepsy occurs within a few years of the initial injury, epilepsy can be a delayed consequence of head trauma, with seizures not occurring for up to twenty years. In recognition of the significance of TBI in our veteran population, the VA Epilepsy Centers of Excellence (www.epilepsy.va.gov) were established to improve the health and well-being of veteran patients with epilepsy and other seizure disorders through the integration of clinical care, outreach, research, and education. The San Francisco VA is home to the national office for the VA Epilepsy Centers of Excellence, and it also serves as one of sixteen epilepsy centers in the VA. These centers provide comprehensive evaluation for veterans with epilepsy, including state-of-the-art diagnosis in the inpatient epilepsy monitoring unit as well as medical and surgical therapies for epilepsy. The epilepsy centers offer patient and caregiver support groups as well as educational symposia for patients, caregivers, and medical providers. Many veterans also take advantage of a social media platform developed for veterans with epilepsy. The San Francisco VA Epilepsy Center takes pride in providing care and treatment for veterans and in leading the VA’s efforts to improve treatment for veterans with epilepsy and other seizure disorders.

At Sutter Pacific Medical Foundation, we have unique resources to meet the needs of children and adults dealing with developmental disabilities. Our pediatric specialists diagnose developmental disabilities in children and provide genetic screenings for children and adults. The Kalmanovitz Child Development Center provides comprehensive developmental assessment as well as treatment programs for infants, preschoolers, school-age children, and families. Under medical director Barbara Bennett, MD, child development specialists diagnose and treat learning disabilities including attention deficit, speech and language difficulties, and autism. Lalaine Dimagiba-Sebastian, MD, says autism and ADHD are the most common diagnoses in children she sees. She works closely with families to identify early intervention and other appropriate therapies. “Early intervention can help facilitate development,’’ she advises. Families interested in pursuing genetic testing to find the cause of a disability can see Eric Muller, MD, PhD, Technology for genetic testing has advanced rapidly and Dr. Muller often sees adults with disabilities that have not been diagnosed because the right tests did not exist years ago. Dr. Muller works with counselors and social workers to find resources for these adults who have aged out of a system designed to support children with disabilities. He also often sees families with children diagnosed with autism. Genetic testing can identify numerous causes of autism, but a genetic cause for an individual patient’s autism is confirmed less than 3O percent of the time. Dr. Muller‘s priority is to appropriately counsel the family regarding prognosis, if known, and recurrence risk, and then discuss available therapies. He counsels families on the chances of having a second child with autism—usually about 5 to 10 percent, unless the genetic cause is identified, and then the risk can increase substantially. A great source of satisfaction is “when I can confirm a diagnosis and, rarely, recommend a medication or treatment that had not been thought of, based on that result,” Dr. Muller says.

SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


CPMC

Edward Eisler, MD

CPMC donated 9,500 prepackaged meals to the Next Door Shelter in the Tenderloin neighborhood. CPMC also provided a grant to assist the shelter in purchasing its own emergency food supply, enough to feed 500 people for two days. The Next Door Shelter, which is operated by the Episcopal Community Services, is an emergency shelter serving 334 homeless adults. The meals are nutritious and are in a self-heating package, making them easy to serve at the shelter or to distribute to members of our homeless community who are outside the shelters. In a prospective, observational study to assess sleep and the risk of falls among the elderly, CPMC and San Francisco Coordinating Center scientist Dr. Katie Stone and colleagues in the MrOS Sleep Study tested the hypothesis that sleep disturbances are associated with an increased risk of subsequent falls. The study included more than 3,000 community-dwelling men aged sixty-seven years and older. Sleep was measured comprehensively, using in-home overnight polysomnography, as well as wrist actigraphy, which collects sleep-wake patterns continuously over a five-day period. Their findings were published in the Journal of the American Geriatrics Society. CPMC Research Institute (CPMCRI) scientist Dr. Greg Tranah received new funding from the CPMC Foundation and the National Heart, Lung, and Blood Institute, to continue his innovative studies in age-related illnesses. Through collaboration with the San Francisco Coordinating Center, CPMCRI is home to the largest, richest data sets about aging in the United States. Age-related neurodegenerative illnesses including dementia are being explored, as is the physical decline associated with osteoporosis and osteoarthritis. Dr. Tranah is among a select group of researchers in the U.S. uncovering how alterations in mitochondrial DNA can lead to cognitive decline and dementia, and how mitochondrial genetic variation plays a much greater role than once believed in neurodegeneration and age-related brain illnesses. WWW.SFMS.ORG

ST. MARY’S

Robert Weber, MD

On March 24, St. Mary’s Medical Center was proud to partner with the SFMS to host a community town hall meeting about an important issue soon to be decided by San Francisco voters—whether to place a tax on soda and other sugar-sweetened beverages. We were joined by Supervisors Scott Wiener and Eric Mar for an evening of discussion about the background of the initiative and how it can improve the health of the community. Funds from the tax would benefit nutrition, physical activity and health programs in schools, parks and recreation centers. One of the speakers was St. Mary’s own Lawrence Cheung, MD, who is also the SFMS president. Dr. Cheung provided information about the initiative from the perspective of a health expert. As physicians, we often see the impact sugary drinks can have on the health of our patients. We are observing an increase in cases of diabetes and obesity among a younger population. As an organization committed to ensuring the health and welfare of our community, we were pleased to help facilitate an engaging discussion about a topic that is sure to be much discussed in the coming months. In late-February, St. Mary’s was proud to become the first hospital in San Francisco to begin the use of state of the art, 3D whole breast ultrasound. The technology was first introduced to physicians at our annual Progressive Dinner in November. Our GE somoŸv Automated Breast Ultrasound (ABUS) system was the result of 10 years of research and development. It is designed to scan a woman’s breast while capturing multiple ultrasound images and displaying them three-dimensionally. From a physician’s standpoint, this technology is incredibly crucial to our ability to comprehensively serve our patient’s needs. As a recent nationwide study demonstrated, there is a statistically significant increase in breast cancer detection when ABUS whole breast ultrasound images were reviewed in conjunction with mammograms, as compared to mammograms alone.

SAINT FRANCIS Robert Harvey, MD

Saint Francis Memorial Hospital recently awarded $110,000 as part of its Community Grant Program to four San Francisco non-profit organizations. This funding helped support programs for youth in the Tenderloin, which shares a neighborhood with our hospital. The support of programs in the community right outside our front doors is at the heart of Saint Francis’ mission. Under the direction of Abbie Yant, our Vice President for Mission, Advocacy and Community Health, we have prioritized three areas: 1) To increase health eating and physical activity; 2) To ensure safe and healthy living environments; and 3) To increase access to high quality health care and services. Saint Francis has awarded community grants annually since 1990. In that time, our hospital has given over $1 million in gifts to over 100 projects. Our goal is to partner with organizations that share our vision for a healthy neighborhood. The grant recipients for this year include the following: • Glide Health Services, which provides healthcare navigation services to patients without a primary care physician. • The Tenderloin Youth Sports Initiative through the Bay Area Women’s and Children’s Center, which offers a variety of sports programs for children and youth in the Tenderloin. • The Health Lifestyles Program at the Boys and Girls Club’s Tenderloin Clubhouse. • An Episcopal Food Services Program, to increase food security at The Crosby Hotel, which serves formerly homeless single adults, many of whom have disabilities. As a healthcare organization, our commitment must extend beyond the walls of our building and out into the neighborhood we share. We are fortunate to possess the ability to improve the quality of life of the poor and disenfranchised, and I’m proud when we, as an organization and as physicians, take this responsibility seriously.

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SFMS BACKS PROPOSED SODA TAX SFMS has teamed up with several San Francisco Supervisors to introduce a proposal to tax sugary bever-

ages, with the proceeds dedicated to fund nutrition, physical activity, and health programs in public schools, parks, and elsewhere. Specifically, this will be a tax of $0.02/oz on any sugar-sweetened beverages that contain more than 25 calories per 12 ounces. Milk, 100% natural juices, infant formulas, and diet drinks will be exempt from this tax. This tax is expected to generate approximately $30 million in revenue per year, will be used for new or expanded programs, and will not replace current funding. Most important, the funds will be prioritized to neighborhoods disproportionately impacted by diseases related to the consumption of sugar sweetened beverages. Supervisors Scott Wiener and Eric Mar joined SFMS President Lawrence Cheung, MD at a community town hall meeting hosted by St. Mary’s Medical Center to discuss the proposed tax and share information about the health implications of soda consumption. Other featured panelists include Ann Myers, MD, SFMS member and Medical Director for Endocrine Quality at St. Mary’s, and Christina Goette, Senior Health Program Planner at San Francisco Department of Public Health. “(Soda) contributes to obesity, which in itself puts them at risk of poor self esteem bullying as well as future health concerns,” said Dr. Ann Myers. Wiener, Mar and Supervisor Malia Cohen are the sponsors of the proposed ballot measure for the November 4 election, which would require two-thirds of voters to pass the tax for approval.

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Above: soda tax panelists | Below: audience asks questions

SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


PUBLIC HEALTH REPORT Tomás Aragón, MD, DrPH

What Do Zombies, Body Snatchers, and the Tobacco Industry Have in Common? Answer: Everything—they are one in the same! I recently spoke to my daughter’s 7th-grade science class on the dangers of smoking cigarettes and electronic cigarettes. Of course, I had to come up with a metaphor that would capture their attention—and tell a story—zombies! We can all imagine zombies trying to get into our home— which we have fortified to protect us from the walking dead. The zombies are the tobacco industry. The fortified home is legislation to protect us from getting bitten and becoming one of them—nicotine-addicted walking dead. However, now the zombies have become body snatchers. They look normal—like us, but their nicotine bite is just as addictive. The body snatchers are the tobacco industry peddling e-cigarettes. They lull us into believing they are the “safe alternative” (the harm-reduction argument) or that smokers will quit smoking (the smoking-cessation argument). Therefore, they argue, we should allow anyone to smoke e-cigarettes anywhere. Their arguments are a smoke screen (they would say vapor)! They could care less about smokers’ health, or anyone else’s health. Here is what they really want: • Change social norms so that e-cigarettes are acceptable (like smoking in the 1950s) • Free e-cigarette advertising by having ubiquitous use of their product • Recruit youth into lifelong nicotine addiction • Keep and get many more addicted to their product • Make tons more money since e-cigarettes are likely less deadly than cigarettes

Here is what nicotine addiction is like (from Dr. Neal Benowitz, UCSF): With repeated exposure to nicotine, tolerance develops. Nicotine withdrawal causes anxiety and stress, both of which are powerful incentives to take up smoking again. Cessation of smoking causes the emergence of withdrawal symptoms: irritability, depressed mood, restlessness, and anxiety. The intensity of these mood disturbances is similar to that found in psychiatric outpatients. Anhedonia—the feeling that there is little pleasure in life—can also occur with withdrawal from nicotine—like other drugs of abuse. Smoking is a highly efficient form of drug administration. Inhaled nicotine enters the circulation rapidly through the lungs and moves into the brain within seconds. Rapid rates of absorption and entry into the brain cause a strongly felt “rush” and reinforce the effects of the drug. There is considerable peak-to-trough oscillation in blood levels of nicotine from cigarette to cigarette. Nevertheless, it accumulates in the body over the course of 6 to 9 hours of regular smoking and results in 24 hours of exposure. (N Engl J Med. 2010 Jun 17;362(24):2295303. doi: 10.1056/NEJMra0809890.) WWW.SFMS.ORG

Why would anyone want anyone to become addicted to nicotine? Only if you can make ‘lots of money from it, I suppose. You would also have to be heartless—a zombie! In the 1930s to 1950s, smoking and tobacco products proliferated without regulations or science about the long-term effects of smoking cigarettes. What resulted was 42 percent of adults as active smokers in 1965, and an entire generation ravaged by the effects of cigarettes for the last several decades. Our communities took action beginning in the 1990s and turned that trend around (12.5 percent of San Francisco adults smoke). Now we are faced with a new challenge that might similarly increase nicotine addiction and health harm to the community. We have a chance to act now to limit exposure to these products. Remember—the real issue is the promotion of nicotine addiction, plain and simple! Are we going to let the Zombie Industry promote nicotine addiction in our communities and to our children? We can prevent a public health disaster. • Protect social norms that make smoking and nicotine addiction unacceptable. • Protect our communities, families, and children from free e-cigarette advertising. • Protect us from nicotine addiction promotion. • Protect us from these zombies.

The San Francisco Board of Supervisors did not buy the bogus arguments from the Zombie Industry. On March 18, 2014, they joined a growing list of cities across the country enacting legislation to extend protection from zombies to include protection from body snatchers. See “S.F. supes vote for same smoking laws for e-cigarettes” (San Francisco Chronicle, March 18, 2014). Kudos to the San Francisco Board of Supervisors! Many thanks to the University of California scientists and providers, health organizations (e.g., San Francisco Medical Society), and youth organizations that provided testimony supporting the regulation of e-cigarettes! Tomás Aragón is Health Officer of the City and County of San Francisco, and director of the Population Health Division at the SF Department of Public Health. He is also a faculty member of the UC Berkeley School of Public Health. This column originally appeared on The Berkeley Blog, http://blogs.berkeley.edu/. APRIL 2014 SAN FRANCISCO MEDICINE

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San Francisco Medical Society Advocating for Physicians and Patients The San Francisco Medical Society (SFMS) has been a champion for community health issues since its inception in 1868. As the only medical association in San Francisco representing the full range of medical specialties and interests, many projects and activities that have begun here have gone on to have implications for the state and the nation. Beyond the broad and deep resources devoted by the CMA to representing physicians in the halls of state politics and in providing many useful practice management resources, here are some highlights from the SFMS community health agenda.

SFMS Community Health Activities

Universal Access to Care: SFMS leaders have long advocated

that every San Franciscan should have access to quality medical care, with ongoing, vigilant efforts to preserve programs and prevent cuts in Medi-Cal reimbursement. Our representatives served on the Mayoral Task Force that designed the Healthy San Francisco program, and SFMS joined in the lawsuits to preserve that program as well. SFMS members advocated for, and even created, community clinics dating back to the original Haight-Ashbury Free Clinics in the 1960s.

Anti-Tobacco Advocacy: SFMS advocates were in leadership

roles in the banning of tobacco smoking in San Francisco restaurants, ahead of the rest of the state and nation; we advocate for ever-stronger protections from secondhand smoke, for removal of tobacco products from pharmacy settings, for higher taxes on tobacco products, and more. SFMS signed onto an amicus brief in support of upholding San Francisco’s law banning the sale of tobacco in pharmacies.

HIV Prevention and Treatment/Hepatitis B: The SFMS

was at the center of medical advocacy for solid responses to the AIDS epidemic, being among the first to push for legalized syringe exchange programs, appropriate tracking and reporting, optimal funding, and more. SFMS is a partner in the Hep B Free program in San Francisco and in educating physicians and patients on prevention and treatment of hepatitis B.

Schools and Teen Health: SFMS helped establish and staff a citywide school health education and condom program, removed questionable drug education efforts from high schools, and worked on improving school nutritional standards; it provides ongoing medical consultation to the SFUSD school health service. In addition, SFMS has authored a resolution allowing minors to receive vaccines to prevent STIs without parental consent. Environmental Health: SFMS’s many efforts include establishing a nationwide educational network on scientific approaches to environmental factors in human health and advocating for the reduction of mercury, lead, and air pollution exposures. Reproductive Health and Rights: SFMS has been a state and national leader in advocating for women’s reproductive health and choice, including access to all medically indicated services. WWW.SFMS.ORG

End-of-Life Care: SFMS leaders have developed numerous

policy and educational efforts to improve care toward the end of life, including promulgation of the Physicians Orders for LifeSustaining Treatment medical order.

Rebuilding and Preserving San Francisco General Hospital: SFMS spokespersons took a lead in both advocating for

full funding of the seismic rebuild and acting on the mayoral committee to advise where and how that would best occur.

Blood Supply: SFMS has long been a partner of the Blood Centers of the Pacific and continually seeks to help increase donations there.

Organ Donation: SFMS has been a leader in seeking improved donation of organs to decrease waiting lists due to the shortage of organs, via education and new polices regarding consent and incentives for organ donation.

Operation Access: SFMS is a founding sponsor of this local organization providing free surgical services to the uninsured and has provided office space, volunteers, and funds. Drug Policy: SFMS has been a leader in exploring and advocat-

ing new and sound approaches to drug abuse, including some of the first policies regarding syringe exchange, medical cannabis, and treatment instead of incarceration. We were integral in the development of the CMA’s landmark report on decriminalization and regulation of cannabis.

Medical Ethics: SFMS has developed and promulgated forwardlooking policies and approaches regarding end-of-life care, patient directives, physician-assisted dying, and other topics of interest to patients, physicians, policy makers, and the general public. Partnerships: SFMS works closely with many local specialty and health organizations, such as the San Francisco Department of Public Health, San Francisco Emergency Physicians Association, San Francisco Pediatric Council, San Francisco Community Clinic Consortium, West Bay Hospital Conference, Chinese Community Health Care Association, and others. ***** “I was an SFMS member for almost fifty years until I retired and always saw them as an important and often progressive voice in organized medicine on many crucial issues.” —Philip R. Lee, MD, UCSF Chancellor Emeritus and U.S. Secretary of Health “The SFMS helped save the Haight Free Clinic from the start, and I’ve been a loyal member ever since. So much of state and national impact has come from here, and the SFMS has helped in many ways.”—David Smith, MD, founder, Haight-Ashbury Free Medical Clinics SFMS: An advocate for physicians and their patients

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IN MEMORIAM

UPCOMING EVENTS

Nancy Thomson, MD

4/22: Legislative Leadership Conference/Lobby Day | 9:00 am to 4:00 pm | Sheraton Grand, Sacramento | This event is offered at no cost to SFMS members. Plan to join more than 400 physicians, medical students and CMA Alliance members who will be coming to Sacramento to lobby their legislative leaders as champions for medicine and their patients. Please email SFMS at membership@sfms.org or call (415) 561-0850 if you would like to attend this event.

It is with our deepest regrets that we report our longtime SFMS member, editorial board member, and San Francisco Medicine obituarist, Nancy Thomson, passed away peacefully in March. Nancy Glidden Thomson, MD, MPH, was born March 14, 1931, in Los Angeles, CA. After a long illness, she passed away in her home on March 4, 2014, with family by her side. Predeceased by parents Roland and Jewel Glidden, sister Mary Lockner, and daughter Ellen Fegétte. Survived by sister Jane Kraus, daughter Elizabeth Colvin, grandchildren Nathaniel, Julia, Penelope, and son-in-law Tom. Throughout her career, Dr. Thomsom has cared for those in need by generously providing her time and expertise. Dr. Thomson’s medical work was rooted in her tenure at Children’s Hospital (now part of CPMC), where she was a practicing anesthesiologist from 1963 to 1985. After rounding out her career as the infectious disease officer and staff physician/surgeon at San Quentin State Prison from 1991 to 2001, she stayed on as a volunteer. As Dr. Thomson reflected on her lifelong career, she said, “I loved the work and truly enjoyed the interaction with all my patients.” Spurred by her desire to help others and experience different cultures, Dr. Thomson lent her medical skills to those in need all over the world. She served as an anesthesiologist four times in Guatemala with the Family Club and for two months in Korea, and she worked as a medical consultant in Japan for nine months. “To visit these countries and do more than just be a tourist was an incredibly rewarding experience,” she said. Dr. Thomson faced personal adversity as well—her elder daughter, Ellen, passed away in 2000, leaving her to care for her two teenaged grandchildren. Then in 2007, a sudden illness left her in critical condition and required her to learn to walk again. Through her strong faith and rehabilitation, Dr. Thomson recovered nicely and continued to give back to her community. An avid reader and writer, Dr. Thomson contributed articles, book reviews, and obituaries to San Francisco Medicine over her many years on the board and was one of the most regular attendees of our monthly planning meetings. At the 2009 SFMS Annual Dinner she recieved her fifty-year pin, marking fifty years of SFMS membership. Her charismatic personality and sense of humor will be greatly missed. Photo above (with caption written by Nancy) from June 1956 courtesy of Dr. Thomson’s family. 30

4/23 Webinar: Medicare Quality Update | 12:30 pm to 1:45 pm | PQRS is a pay-for-reporting program that gives eligible professionals (EPs) incentives and payment adjustments if they report quality measures satisfactorily. This 1.5 hour webinar provide an update on upcoming changes that will impact your practice. The webinar is free to all SFMS members and at $199 for non-members. Register at http://bit. ly/1lawIes.

5/1: Reception for Assemblymember Richard Pan, MD | 6:00 pm | SFMS, 1003A O’Reilly Avenue | Join local physicians for a fundraiser for California state senate candidate, Dr. Richard Pan, at the SFMS office in San Francisco’s Presidio. With the implementation of the ACA, the attack on MICRA, and ongoing scope of practice issues, it is vital to support members in the legislature who are dedicated supporters of the house of medicine. For more information or to RSVP, please contact Posi Lyon at (415) 561-0850 x260 or plyon@sfms.org. 5/2: CME Provider Annual Conference | 8:30 am to 4:30 pm | Westin San Francisco Airport, Millbrae | Organized by the Institute for Medical Quality, the annual conference will present the latest changes from ACCME and how you can enhance your compliance and gain more value from your CME activities. For more information, please visit http://bit.ly/OI7fLn.

5/4-5: California Immunization Summit | May 4-5, 2014 | Embassy Suites, Sacramento | This annual summit is presented by the California Immunization Coalition. Visit http://conta.cc/OI4ZE3 for registration information and a summit agenda.

5/20: San Francisco Physician Investment Group Meeting | 6:30 pm | St. Francis Memorial Hospital | Ever wonder why Warren Buffet is so successful? Want to know how to choose equities, options and mutual funds? Interested in becoming a better investor for retirement or to supplement your income? Local physicians are starting up a new discussion group where doctors help doctors achieve their financial goals. Come join your colleagues for a stimulating evening. Novices to experienced investors are welcome! Dinner will be provided. For more information, please contact George Fouras, MD atgeofou@sbcglobal. net. Please note the views of investment group members are their own do not represent the views of SFMS or its endorsement. Complimentary Webinars for SFMS Members | CMA offers a number of excellent webinars that are free to SFMS members. Members can register at www.cmanet.org/events. • April 23: Surviving Covered California: What Physicians Need to Know • 12:15 pm to 1:15 pm • April 30: Stage 2 Meaningful Use/2014 Edition: What You Need to Know • 12:15 pm to 1:15 pm

SAN FRANCISCO MEDICINE APRIL 2014 WWW.SFMS.ORG


You have to pay for workers’ compensation insurance. But...

YOU DON’T HAVE TO In California, rates for workers’ compensation insurance are soaring. In the second half of 2013, rates increased by an average of 8.7%.1 That’s after a 10% increase in the first half of 2013.2 Source: Workers Compensation Insurance Rating Bureau of California, http://www.wcirb.com/sites/default/files/documents/132023_010114_ amended_ppr_filing_complete.pdf

1

SFMS members, call 800-842-3761 to see if you can save!

Are you paying too much for your workers’ compensation coverage? Finding out is easy. Just call 800-842-3761 to compare your current policy with workers’ compensation insurance available through the San Francisco Medical Society. This members-only program is available through Mercer. As the world’s leading insurance broker, Mercer can provide the outstanding service and expertise you deserve. Call Mercer at 800-842-3761 today to get your free, no-obligation quote.

2 Source: Business Insurance, https://www.businessinsurance.com/ article/20130925/NEWS08/130929901

SPONSORED BY:

Mercer Health & Benefits Insurance Services LLC • CA Ins. Lic. #0G39709 67105 (4/14) Copyright 2014 Mercer LLC. All rights reserved. 777 South Figueroa Street, Los Angeles, CA 90017 • 800-842-3761 CMACounty.Insurance.service@mercer.com • www.CountyCMAMemberInsurance.com


OUR CANCER EXPERTS SHED LIGHT. YOU’RE NEVER IN THE DARK. CPMC brings nationally-recognized cancer experts to our community, including our programs for melanoma led by Dr. Mohammed Kashani-Sabet and gynecologic oncology by Dr. John Chan. We take pride in providing timely access to our expert physicians, and personal follow-up with a patient’s primary or referring physicians means you’re always informed. Comprehensive cancer care at Sutter Health’s CPMC. It’s another way we plus you.

cpmc.org/cancer


April 2014