Page 1

COMMUNITY Volume 2 • Issue 3 • Fall 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.


+ Creativity

The Art and Life of Paul Klee Alpha-1 Advocate Len Geiger’s Photography HDYO’s Creative Expression


Pediatric Lung Transplant Q & A—Thomas Spray, M.D. Children’s Health Insurance Program Pediatric Narcolepsy And More

Notice the person and not the patient. Oxy Couture is proud to have developed a nasal cannula cover that is washable and interchangeable. We have designed these covers to aid in the prevention of break down of the skin from the tubing due to prolonged oxygen wear. At Oxy Couture we address not only your comfort but your need for individuality. Our covers come in many styles, and can even be customized to your personal needs. At Oxy Couture we want people to see the person, not the patient.

Where Breathing Right Never Looked So Good!





FALL 2013 Children & Creativity Issue


24 4 5 6

Contributors’ Page Editor’s Letter Vice President’s Letter

14 20

9 CVC Close Up F or Caring V oice Coalition Senior Case Manager Amary llis V ega, tak ing care of others is a family matter.

10 Patient Association Profile

Creative Exchange

Hu ntington’s Disease Y ou th O rganization’s global su pport network encou rages creative ex pression among its members. C o m m u n i t y talk s to HDY O Chair B .J . V iau and National Y ou th Alliance B oard Member Angela Mabry .

14 Adult Education Ten- y ear- old K endra isn’t letting narcolepsy discou rage her dream of being an animal rescu e officer, or distract her from her keen interest in animals, inclu ding a very special horse named Melody .

28 Legal Corner

16 Line Dancing Modern artist Pau l K lee is k nown for celebrating the spontaneity of children’s art. Stru ggling with scleroderma in his later y ears, K lee continu ed to ex periment with different techniq u es and media to create play fu l, powerfu l art.

20 Second Wind Dou ble- lu ng transplant recipient and alpha- 1 advocate L en G eiger shares his ey e- catching photography with C o m m u n i t y .

24 Newsmaker Q & A C o m m u n i t y interviews Children’s Hospital of Philadelphia’s chief of cardiothoracic su rgery , Thomas Spray , M.D., abou t pediatric lu ng transplantation.

The Kids are All Right

CV C Health Care Attorney Stephanie Posuniak outlines the benefits of the Children’s Health Insu rance Program (CHIP) and the Affordable Care Act for families.

30 In Your Words W hen Maria B erg’s grandnephew and grandniece were abandoned by their parents, B erg refu sed to let her pu lmonary hy pertension prevent her from relocating to the Philippines to adopt them. C o v e r p h o to b y P h ilip p e T a r b o u r ie c h . ©C r e a v iv a

Staf f


Editor in Chief

Pamela Harris Samantha Harris

Eva Leonard 888.267.1440, ext. 105

Advertising Disclaimer Any references to products, services or health care providers in this magazine are not a recommendation or endorsement of products, services or providers.

Medical Disclaimer The information provided in Caring Voice Community is not a substitute for professional medical advice or care.

Director of Communications

Graphic Design & Illustration

Jennifer Previtera 888.267.1440, ext. 141

Anthony Nesossis 888.267.1440, ext. 174

Copyright Caring Voice Community is produced by Caring Voice Coalition, Inc. Copyright ©2013

Please recycle this issue.

Contributors Maria Berg Maria Berg was born in San Juan, Philippines. When Berg was 12, her parents separated, and her mother struggled to earn a living. While Berg attended college, she held various jobs to help support her family. Quitting college, she moved to Dubai, United Arab Emirates, to work full-time so that she could continue to help her family financially. Her pulmonary hypertension was diagnosed in 1992. Berg became engaged to her husband, Alan, and came to the United States as his fiancé in 2004. After their marriage, the Bergs decided to adopt Maria’s grandnephew and his sister, who had been abandoned by their parents. John, 13, has immigrated and lives with Maria and Alan in Clovis, California. His sister, Shohini, 11, is to join them soon. Len Geiger Len Geiger was diagnosed with alpha-1 antitrypsin deficiency (inherited COPD) in 1994 and has been involved in the alpha-1 community ever since. He received a life-saving double-lung transplant in 2002. Since then, Geiger has been featured in publications including Runner’s World magazine and Sports Illustrated and on CNN, NBC, the Discovery Health Channel, HBO, ABC and PBS. As an alpha-1 advocate, Geiger maintains his commitment to increasing the public’s understanding of alpha-1 and serves as a resource for medical professionals, newly diagnosed patients, and their families. He lives in Jacksonville, Florida with his wife, Christina, and daughter, Ava Corinne. Angela Mabry A recent University of New Mexico graduate, Angela Mabry is a member of the New Mexico Huntington’s Disease Society of America affiliate and on the board of the National Youth Alliance. She has hosted numerous fundraisers and educational events to help spread Huntington’s disease awareness. Mabry has made it her mission to teach her community about Huntington’s disease and to advocate for her family and friends who have been touched by the illness. Sabrina I. Parmelee CVC Communications Specialist Sabrina I. Parmelee has been with CVC since June 2012. Parmelee translated text from Switzerland’s Paul Klee Center from German to English for this issue’s story, “Line Dancing.” Born into a military family, she has traveled extensively. She spoke German as a child while her family lived in Germany, her mother’s native country. Parmelee has maintained fluency in German and English and is also dedicated to improving her Spanish skills. She has found speaking several languages has broadened her ability to assist people. Stephanie Posuniak CVC Health Care Attorney Stephanie Posuniak assists patients with the various stages of the Social Security disability application process. Prior to working for CVC, Stephanie was recruited by the Social Security Administration to act as a specialist in Title II of the Social Security Act. She is a member of the Administrative Law and Regulatory Practice Section of the American Bar Association, the National Organization of Social Security Claimants’ Representatives, and the State Bar of Michigan. Thomas L. Spray, M.D. Thomas L. Spray, M.D., is chief of the Division of Cardiothoracic Surgery at The Children’s Hospital of Philadelphia, director of the Hospital’s Thoracic Organ Transplantation Program and Professor of Surgery at the University of Pennsylvania School of Medicine. During June 2013, Spray performed two life-saving lung transplants on ten-year-old cystic fibrosis patient Sarah Murnaghan. Murnaghan’s parents had fought to make exceptions to the Under 12 Rule possible, allowing her to be put on the adult donor waiting list, from which she received both sets of lungs. Murnaghan celebrated her eleventh birthday on August 7, 2013. B.J. Viau In 2013, B.J. Viau became the Huntington’s Disease Youth Organization’s (HDYO) first chairman of its international board of directors. The twelve-person board is made of young people, parents, and professionals from around the world who oversee HDYO and its mission. He became involved in the organization’s creation after meeting its founder, Matt Ellison, and other young people at an international HD conference in 2009. Viau’s mother passed away from Huntington’s disease in 2011, and she is his continued inspiration to help the next generation overcome the disease.

4 • Fall 2013 Children & Creativity Issue

Community Editor's Letter Eva Leonard

As Community magazine’s new editor-in-chief, it’s a privilege and a pleasure to work with and to get to know you, our readers. We’re dedicated to helping share your stories and to finding those that will provide the information, emotional support, inspiration, and connection you need. To that end, this issue of Community has two related focuses: children and creativity. Our feature story on the artist Paul Klee describes how he admired and was

influenced by the free nature of children’s art, and how it helped him deal with the

scleroderma that struck him later in life. We hope you’ll enjoy the vibrant colors and playful lines of his work, images of which a number of museums have generously shared with us for the article.

Huntington’s Disease Youth Organization (HDYO) is an extraordinary group that

encourages creative expression among its young members to help them deal with

lives affected by HD. In this issue’s story on the group, HDYO shares art created by

some of its members that expresses universal emotions, helping young people affected by HD connect with each other around the world.

Wandering through a museum or gallery, paging through an art magazine, or

scrolling through a museum website, it’s easy to understand how healing it can be to

get lost in a swirl of colors, textures, and shapes. Fortunately, you don’t have to be an artist, or know a lot about art to enjoy it, or to create it.

Len Geiger modestly describes himself as “just a guy who likes to take pictures.”

When Geiger realized that he needed to scale back his athletic endeavors, following a life-saving double-lung transplant for his alpha-1 antitrypsin deficiency, he tapped into his creativity. Geiger takes photos that reflect his life and his inspiration, both

at home, and as he travels the country as an advocate for alpha-1. They’re photos that we’re delighted to feature in this issue’s profile of Geiger.

If you have some free time, but can’t make it to a museum, take a look at some of

the many museum websites listed in the Paul Klee article. Pick up a paintbrush, take photos with your cell phone, write about something that moves you, or just let your doodles run with your imagination. Don’t censor or judge yourself. You might be

Photo: Charlie O


surprised at what you can do and how good it feels.


CVC Vice President's Letter Samantha Harris

The patients whose stories we feature in this issue all have one thing in common: They’re doing things that make them happy. Over time, we often lose the simple view of the world that we had as children. We overthink things. We postpone joy. We give ourselves reasons that we can’t try new things, and we put ourselves in boxes. Don’t be afraid to follow your passion, to allow yourself to find or reclaim

something that brings you joy. Think about the things that you love doing so much

that you happily lose track of time, or the things that you’ve always wanted to try or to learn more about, and immerse yourself in them.

Your disease does not define you. It’s not who you truly are. Finding a creative

outlet—whether it’s visual arts, writing, music, dance, theater, or something entirely different—can provide refuge, perspective, help you express yourself and discover (or rediscover) who you are and what makes you happy. And don’t be too hard on

yourself—it’s OK to take baby steps and to allow yourself to make glorious mistakes and messes along the way.

You might not think of yourself as creative, but everyone has talents that can go

overlooked or be discounted. You don’t have to put pressure on yourself to write the next great American novel or create an award-winning film. Something as

deceptively simple as having an appreciation for well-written stories, a green thumb, or an interest in design can take you a long way emotionally.

We encourage you to explore, and to fill your life with the things that stimulate

6 • Fall 2013 Children & Creativity Issue

Photo: Tay lor Scott

your imagination and make you happy. Follow your passion.

READERS COMMENTS W e’ d lik e to hear f r om


[I first] heard about Caring Voice Coalition while hospitalized. One of my nurses told me about this wonderful group her mother works for called CVC, and that I should give them a call. I did and have never been disappointed. Thank you so much for all you do. — T r a c y S c h u t t, C o lo n ia l H e ig h ts , V ir g in ia .............................................................................................................................

Email your feedback and questions to

m agaz ine@ c ar ingvoic e. or g.

I just discovered CVC. I have scleroderma, PH, and lung fibrosis, and CVC helps with my medication and my disability paperwork. God bless everyone at CVC. —

C h e r y l K n e a l, O r la n d o , F lo r id a ..................................................................................................................................................................................................

Caring Voice Coalition picks up the costs for my medication. Do you all stop each day to realize how many lives you have saved? M a t t y H e e n a n , T u c s o n , A r iz o n a Omission: In the summer issue of Community, in the Newsmaker Q & A article, we inadvertently omitted contact information for Emerson Wickwire, Ph.D., sleep medicine program director at Pulmonary Disease and Critical Care Associates, Columbia, Maryland. His website is www. He can be contacted at


c om m unity.

Get support. Meet new friends. Share your stories.

CLOUD 9 C V C ’ s C L O U D 9 online p or tal is the sec ur e, easy w ay f or p atients to: • Apply for or renew financial assistance • Update personal information • Communicate with your CVC care team T o lear n m or e, visit w w w . c ar ingvoic e. or g.



Registering is easy! 7

Now, Caring Voice Coalition

Automatic Renewal.

Renews For You.

Automatic Approval.

We’ve Changed Our Renewal Process.

No Application to Fill Out.

That Means :

Now, Caring Voice Coalition Renews

for You.

• Your CVC renewal is automatic.

No Application to Return.

• Your CVC approval is automatic. • You no longer have to complete and return a CVC renewal application. • CVC will send you all the details about your renewal in November 2013. Questions? Call CVC toll-free: 877-426-0712.


We’re Here to Help

COMMUNITY Patients living with rare diseases, and their caregivers, find support and resources in CVC’s Community magazine, on CVC’s Facebook and Twitter pages, and on CVC’s website,

Donate to Community.

Community magazine would not be possible without your contributions.

Y ou r donations help fu nd Caring V oice Coalition’s q u arterly C o m m u n i t y magazine. W e’re dedicated to providing su pportive content in C o m m u n i t y and on the CV C website, both for patients living with rare diseases, and for their caregivers. Please consider donating to Caring V oice Coalition. W e greatly appreciate y ou r generosity .



Caring V oice Coalition 8 2 4 9 Meadowbridge R oad Mechanicsville, V A 2 3 1 1 6

U S E T H E E N V E L O P E T O G et a y ear of C o m m u n i t y —


fou r q u arterly issu es—

S ub sc r ib e online: E m ail:


DO N A T E • Fall 2013 Children & Creativity Issue

for $ 1 0 .

CVC Close Up:

Amaryllis “Ami” Vega Caring Voice Coalition Senior Case Manager


Photo: Anthony Nesossis

was born in Boston and raised by my grandparents in Puerto Rico, where I lived for five-and-a-half years. I was extremely close to my grandmother. She taught me the value of hard work and the importance of being kind to others. I never heard her say no’ to anyone. I like to relate to other people and put myself in their shoes. I’m very outgoing and easy to talk to. My mother works at C C too. My whole family likes to take care of others. Before I started working here, I volunteered to come in and help with mailings. I’ve been at C C for two years, and I never get tired of doing what I do. It’s more than just giving grants. It’s like being part of a family that includes not only the employees, but also the patients. Sometimes when patients call us, they’re scared. I don’t have children, but when mothers and fathers call about their children, I can hear in their voices what they’re going through. After they speak to us, and we help them, they feel good, and they feel supported, and it reminds me of my purpose. I’m appreciative that I work here; it’s a privilege. In my free time, I like to write Spanish poetry and take road trips. My favorite poet is from Mexico and goes by her first name, Noelia. She focuses on life and love, and those are the two big subjects that are easy for me to relate to when I write. Sometimes, if you take the time to write out your feelings and thoughts, it helps you let it all out and not have to worry about being judged. I’m one of four C C case managers who are fluent in Spanish. Non-English-speaking patients deserve to be treated with the same respect as anyone else. We make sure that they are well taken care of. What’s the one thing I feel is most important to say to patients and caregivers It’s a Spanish expression, “Nunca te rindes.” It means, “Never give up.”


Patient Association Profile

Huntington’s Disease Youth Organization and National Youth Alliance

Exchange Since its February 2012 launch, the Huntington’s Disease Youth Organization (HDYO) has attracted more than one million website views and official support from approximately 20 HD associations worldwide. Community spoke with HDYO Chair B.J. Viau, about the nonprofit’s global focus and the importance of creative expression for its community.


DYO helps children, teens, and young adults around the world learn about HD in an engaging, appropriate way and provides support (peer and professional) via the website and at a growing number of face-to-face events globally. Many of our approximately onehundred volunteers are young people impacted by HD who want to help others like them. Our group also includes qualified youth workers, counselors, researchers, accountants, translators, and professionals in sales, media, and law. Creative expression is very important to help young people convey a different perspective of HD. We do our best to promote a hopeful and open environment. Everything we do is positive— even when discussing difficult topics, we end positively—and this rubs off on young people. They tend to like the bright atmosphere and hopefulness HDYO provides. Creative expression helps us convey this positive environment and break down the barrier of stigma. Young people can use the site’s creative expression area to spotlight how they feel about HD, through art, poetry, blogs, and more. There is a huge stigma around HD within many, many families. It’s a global problem with serious implications for individuals impacted by HD, as there is this sense of a dark cloud hanging over them, leaving people unable to ask for support, speak about HD, or accept it as part of their lives. This

10 • Fall 2013 Children & Creativity Issue

HDYO Green Man by Megan, teen from Australia

the stigma around HD, then go back to their families and social environments and tackle it there too. They’re changing the way their parents, family members, and friends view HD through understanding, education, and support. Young people often grow up feeling unable to ask questions about HD. So HDYO provides an “Ask a Question” service allowing them to send their questions to a team of HD experts, who provide appropriate and correct answers. This gives them contact with some of the most knowledgeable professionals in the HD community, and they can also send in questions anonymously. It may be the first time a young person has been able to ask a question about HD. It’s a simple but invaluable service that allows them to better understand HD and their lives, and also promotes resilience. We’re working to develop more face-to-face support opportunities. This year we stigma is incredibly toxic to wellbeing, organized a European Youth so breaking it down is one of the most Camp in Spain, with the important challenges our community support of several European faces. HD associations. More than HDYO’s identity is an extremely 40 young people from eight open and positive one. Everything different European Union on our website is colorful, and we nations attended the camp. refuse to use certain words such as We’re working on plans for “devastating” or “incurable,” as these A Scottish youth group creates graffiti titled My Life in HD 2014 to bring similar events, are words generally used without any during a 2011 Fresh Paint workshop. educational sessions, and thought about the impact they can support opportunities to have on an individual. North America, Europe, South America, and Australasia. HD is not so doom-and-gloom anymore. There is very HDYO has always had a global focus, because we want to credible hope for effective treatments in the next 10 to 15 support young people, no matter where they live. We do so years, and support is the best it has ever been, so a bleak throughout Europe and North America, but we’re also starting outlook on HD could be argued as being outdated. projects in South America soon, and we provide support in ut we’re not hiding the reality of HD from young people. Australasia too. We re also making more connections in Asia We explain HD in great detail, but it in a way that promotes and Africa so that we can enter these regions effectively. understanding and resilience, rather than fear. Since launching, we’ve seen many young people overcome Continued on page 12


uch HD research aims to try and stop the disease or slow it down at the pre-symptomatic stage in early adulthood. It is vital to support young adults and to engage them in research. HDYO works to do so by explaining studies simply and highlighting those that young adults can participate in. Enroll-HD is a global observational study creating a worldwide HD knowledge database, and providing a sizable register of possible participants for future HD trials or studies. Everyone in a HD family can participate, even partners or close friends, and the study involves one annual appointment, which includes a few short cognitive and motor tests, along with some simple questions. For more information, go to


It is an absolute necessity to make HDYO’s educational resources available in as many languages as possible. Our site is in five languages (English, Spanish, Portuguese, erman, and Dutch), and we’re working on another 10 to 15. Our translation team consists mostly of young people impacted by HD who want to help. They feel capable of translating, and we support their participation. Translating needs to be of a high standard to appear on the HDYO website, so we check and double-check all text using our team of reviewers, who usually are translation professionals. Every time we launch a new language we see enormous boosts in views. HDYO in Spanish brings in around 25,000 views per

month, and the other languages produce similar results. It is hugely encouraging to see that the site is used globally, giving young people resources that were once unavailable to them. We’re also able to communicate with those who don’t speak English, using a team of confidential translators. This means young people from anywhere can contact HDYO and have their voices and concerns heard. Whether we can help them or not is another issue, but making that communication available is the first step to giving support. —B.J. Viau For more info, go to hdyo. org. If you’d like to help translate or review for HDYO, email info@

Being at Risk by Emily, teen from Canada

Angela Mabry, NYA Board, HDSA New Mexico Affiliate President


he National Youth Alliance was formed 12 years ago during the national HDSA convention by a small group of young people affected by HD/JHD. It was founded on the belief that youth needed support from other young members of HDSA who knew what it was like to grow up with HD in their families. We are an organization run by youth for youth. We are members from across the nation struggling with life as children, teens, and young adults facing a constant battle with Huntington's disease. We have knowledge beyond our years due to the struggles we have had to overcome. The NYA reaches out to youth and young adults with HD in their lives by creating a supportive atmosphere. We help children, teens, young adults and their families across the U.S. navigate life impacted by HD. In 2011, I received an NYA scholarship to the national

12 • Fall 2013 Children & Creativity Issue

convention in Minnesota. I had spent a few months learning about the NYA. When I arrived at NYA Day, I was relieved to see that I was not alone—a youth living in the shadow of a parent who had HD and in the cloud of being at risk for the disease. I was able to form lasting relationships with friends from all over the country. Now I’m on the board for NYA, and, alongside other members, helping to make the NYA even stronger. We’re working to expand our reach to members throughout the year, not only during NYA Day, and are moving forward to become a great organization in partnership with HDSA and HDYO. For more information about NYA, go to www.hdsa. org/nationalyouthalliance/nya-1/index.html, call 1-888-HDSA-506 (Helpline), or write HDSA, 505 Eighth Avenue, Suite 902, New York, NY 10018.


OR CALL 970-867-2235

Tired of lugging your Oxygen around?

Busy Breathers OUR BAGS MAKE EVERYDAY OUTINGS EASIER! The answer millions of oxygen-users have been looking for. 970-867-2235

Busy Breathers LLC 1121 Lake Street, Ft. Morgan, Colorado 80701


Jennifer Arthur knew that something was wrong with her five-year-old daughter Kendra, and that it was not sleep apnea. But because narcolepsy is rare in children, Jennifer had to strongly advocate on her daughter’s behalf, repeatedly requesting that Kendra’s doctor test her for the disorder. Community spoke with Jennifer and Kendra about life with pediatric narcolepsy.


arcolepsy is typically an adult disease. But ten-year-old Kendra experienced the onset of the condition at the tender age of five. Her mother, Jennifer, noticed that Kendra was tired much more often at home, but initially believed that her fatigue was the result of long days in kindergarten. “We were trying to get her to bed a little earlier,” Jennifer recalls. “Then, her kindergarten teacher called me and said that she had noticed Kendra falling asleep very quickly in school. She would help Kendra with her schoolwork, go help another student, then look up and see Kendra out-cold asleep,” Jennifer remembers. “After we spoke, I realized that something could be wrong. “I called her pediatrician, who told me to bring her in. She said something was clearly wrong and sent her to a sleep specialist. They did a sleep study, and the first diagnosis was severe sleep apnea. They put her on a CPAP machine, and said these symptoms should subside, and she would be fine again. But her problems were still there. She would still fall asleep suddenly.” ennifer says that Kendra’s first episodes of cataplexy, causing her to lose muscle control, were baffling and alarming, “It almost looked like she was having a weird seizure, or a stroke.” Her mouth went slack, and her body slouched. If she laughed, or got excited or frightened, she dropped, almost to the ground. Now, Jennifer and Kendra laugh when lightheartedly comparing those bouts of cataplexy to the disorder experienced by “fainting goats”—myotonic goats, whose muscles freeze for several seconds when they’re frightened or excited, often causing them to fall over.

14 • Fall 2013 Children & Creativity Issue

Although they often use humor in describing some of the symptoms of narcolepsy, Jennifer and Kendra are well aware of its seriousness, the humor providing comic relief to help them deal with their fears about the disease. ennifer’s tone grows serious as she recalls one frightening incident: “Kendra actually got hurt very badly. We were on a trip to California, and she had cataplexy. She collapsed and hit her head on the table. lood went everywhere.” The injury fueled their urgency to get the right diagnosis. “We kept pushing her neurologist to give her a narcolepsy test, but he said that she was too young to have narcolepsy. During that time, Jennifer remembers, “She would fall asleep in the middle of taking a bite of food, fork in hand. It was dramatic. We would be riding in the car, talking, and she would fall asleep between one question and the next. Friends and family members asked if she was having seizures.” Cataplexy would overtake her when, for example, she saw something funny on television, and she would drop to the floor. “I noticed that I was falling asleep on the ground a lot,” Kendra remembers. “We kept saying, There’s something going on, and it’s not sleep apnea,’” ennifer recalls. “Finally we talked her neurologist into doing a narcolepsy sleep study and a blood test. She went through a lot of testing. After two narcolepsy tests the first one was inconclusive they realized that she did in fact have it. In 2009, they finally diagnosed her as having narcolepsy with cataplexy. “After that, it was trial and error with medication. This is an adult disease. sually, the first onset of narcolepsy doesn’t occur until patients are in their thirties. It was really rare that she got it at five. “The hospital said that she was the only child they had ever

seen with it. I remember the nurse wondering, How do we even test a child for narcolepsy ’” Although Kendra now has an accurate diagnosis and treatment, ennifer says that difficulties remain. “We deal with it, but it’s hard to find information on pediatric narcolepsy. We can’t really find a lot of answers. It is frustrating.” Kendra echoes that frustration, expressing that having narcolepsy makes her feel very upset. “I hate going to sleep all the time,” she says. At school, she must schedule a daily nap, squeezing one in between classes. “She will be going into fifth grade,” says ennifer, “and no eight-, nine-, ten-year-old wants to say, I have to go and take a nap now.’ “She has a lot more homework than the rest of the kids because she has to make up for what she misses due to the naps. Some of the kids can be unkind to her, but those she has known since kindergarten are pretty understanding.” ennifer finds the small size of Kendra’s elementary school to her daughter’s benefit. “The school enrolled her in an Individualized Education Program (IEP) so that she would receive specialized education and services. Her teachers are so observant. Her school has been very helpful through all of it.” Kendra must wait for at least two hours after eating dinner to take the medication that helps her sleep soundly. Then, three to four hours later, the alarm clock goes off, and she wakes to take a second dose of nighttime medication. When she wakes in the morning, she takes another medication that will help keep her alert during Photos, clockwise from opposite page: Kendra at the day. summer camp with Melody the It’s a regimen that is horse; posing with a fox at West not negotiable. “She’s Coast ame Park Safari; and with her rabbit, Farly, at 4-H. not functional without the medication,” Jennifer says plainly. Experience has painfully born out this observation. About a year and a half ago, Kendra’s father’s health insurance denied coverage of her medication, contending that she was too young to be prescribed it. As a result, Kendra went without her medication for three weeks: Her grades plummeted from A’s and ’s to D’s and F’s, and she missed half a quarter of school. On one particularly bad day, she became so aggressive with her

teachers that the principal called her mother and requested that she come to school and take her home. When she was finally able to resume taking her medication, she had to start at a lower dose that her doctor gradually raised. “It took about a month to get her grades back up,” Jennifer recalls. Kendra and Jennifer express the fears that come with uncertainty about the future. “Many with narcolepsy say that they experience the worst of it about 15 to 20 years after its onset. Hers started at the age of five. We don’t know what to expect. “She wants to go to high school and to college, and to learn to drive. ut if she’s driving and thinks of or sees something funny, cataplexy can cause her to lose muscle control. She’s kind of frustrated about that. “She does have her harder moments. She struggles with the weight gain that can come with narcolepsy. It’s frustrating, because she tries to stay active. “She’s strong. She has a good personality. As long as she’s doing things, she’s fine. It’s very frustrating, but it’s manageable. It is something you can live with. We just realize that we have to take certain precautions.” Kendra enjoys activities ranging from sewing and knitting with her grandmother to bike riding. She excels at swimming (she must swim with a partner) and at shooting, in which she has proven to be eagleeyed at hitting targets. “Pretty good for a ten-year-old girl,” Kendra laughs. Kendra’s narcolepsy isn’t deterring her interest in school or her eagerness to set goals. She enjoys reading and writing classes, and received a penmanship award last year. She’s excited about one of her goals: Her school’s new principal has set a challenge for students who read the most over the summer. Her reading interests are varied, indicative of a bright, inquisitive mind, and include apanese anime-style books, science fiction, and animal books. She also loves riding horses, and researching and writing about animals, and wants to be an animal rescue officer when she grows up. Last summer, Kendra’s love of animals led her to attend horse camp. While there, she made some new friends and also grew particularly fond of a horse named Melody. She laughs gently as she recalls how she was fascinated to discover that Melody also had a sleep disorder, one that would cause her to fall asleep while being groomed. It’s a story that beautifully blends Kendra’s spunky humor, resilient attitude, and interest in animals. It also brings to mind the name and focus of one of her favorite television shows: “Animal Planet: Surprisingly Human.” —EL


Modern artist Paul Klee admired and was inspired by the spontaneous power of children’s art. Eva Leonard reports on Klee’s life, art, and creative perseverance as he fought the destructive forces of the Nazi party and the effects of systemic scleroderma.


ne of the world’s most celebrated and influential modern artists, Paul Klee (pronounced “klay”), drew profound inspiration from the art of children. Because Klee believed that children created the purest art, he worked to make his art more child-like. And he took very creative steps to do so. To reduce the impact of his artistic education on his art, he sometimes switched hands or closed his eyes when he drew, and he also used methods such as scraping layers of paint from his work to reveal the colors underneath. Klee also collected and studied the drawings of his son, Felix, and those of other children. The influence of children’s art on his work, with its simple, bold lines, and vivid colors, is clear in his cheeky response to art critics of the time: “Those gentlemen, the critics, often say that my pictures resemble the scribbles and messes of children. I hope they do!” Klee’s observation, “A line is a dot that went for a walk,” reflects his boundless sense of playfulness and imagination. He was prolific, producing more than ten thousand works of

This page: Paul Klee, Bern, 1911. Photograph: F. Fuss, Bern. 16.7 x 10.8 cm. Zentrum Paul Klee, Bern. Gift of the Klee family. Opposite page, top: Two Heads, 1932. Paul Klee 
Swiss, 1879-1940. Encaustic, oil (?) and pencil on canvas
. 31 7/8 x 33 1/2 inches (81.0 x 85.1 cm)
 Norton Simon Museum, The Blue Four Galka Scheyer Collection. 
P. 1953.066
 © 2013 Artists Rights Society (ARS), New York / VG Bild-Kunst, Bonn. Opposite page, bottom: Paul Klee, Fish Magic, 
Oil and watercolor on canvas on panel
. 30 3/8 x 38 3/4 inches (77.1 x 98.4 cm). The Louise and Walter Arensberg Collection, 1950.

art, more than two thousand of which he created following the appearance of symptoms that would later be diagnosed as scleroderma. His desire to continually simplify his technique would serve him in his later years, as the symptoms of scleroderma began to limit his movement. orn in 1 79 near ern, Switzerland, into a family of musicians, Klee first studied to become a violinist. He initially drew only in black and white, but a trip to Tunisia in 1914 awakened his sense of color and light. Klee also used elements of music, letters, numbers, and hieroglyphiclike symbols in his work, and was intrigued by the art of the mentally ill. In 1906, he married the pianist Lili Stumpf, and the couple moved to Munich. In 1916, he joined the erman army, painting camouflage on planes. Klee lectured at the auhaus from 1921 to 1931 and at the Art Academy in Dusseldorf until the Nazis dismissed him in 1933, when he refused to pledge allegiance to the party, and the estapo searched his home. He then fled Nazi ermany for Switzerland. The Nazis declared Klee’s art “degenerate,” as they did most Modern art, including the works of Pablo Picasso, oan Mir , and Salvador Dali, which they deemed counter to Nazi ideals. The Nazis seized more than a hundred of Klee’s works from public collections. Their so-called “Degenerate Art” exhibition in 1937 in Munich, meant to ridicule art they considered “un- erman,” included 17 works by Klee. After fleeing to Switzerland, Klee had his first exhibition in London and was visited by wellknown artists, including Picasso, and Wassily Kandinsky. His star rose in the nited States, where he earned kudos from artists Diego Rivera and Frida Kahlo, as well as from art dealers, collectors, and museum directors. In 1936, the first symptoms of Klee’s scleroderma heart irregularities, fatigue, weakness, chronic pneumonia, hardening of the skin, and gastrointestinal problems became pronounced. Although he produced only 25 works of art that year, he rebounded as the disease stabilized. He also found new ways to create, using different styles and materials, creating 264 works the following year and more than twelve hundred pieces in 1939. Klee’s scleroderma was likely diffuse systemic sclerosis, the most serious form of the disease. (There were no treatments for it at that time, and the condition went undiagnosed until after his death.) His art provided refuge and a way to express his struggles with the illness. In his book, “Paul Klee and His Illness” (Karger, 2010), the author, Hans Suter, M.D., noted, “For Klee, drawing and painting were his personal form of meditation. It seems to me that this ability to sink into deep thought

A line is a dot that went for a walk ...

Continued on page 19


Paul Klee Collections & Exhibitions

The following museums have Paul Klee collections and/or exhibitions of his work scheduled. If you’re planning on visiting a museum to see its Klee collection, check to confirm that it will be on display, as art is often rotated. You can also view Klee’s works on many of the museum websites below. altimore Museum of Art 10 Art Museum Drive altimore, MD 2121 443-573-1700 uggenheim New York 1071 5th Avenue New York, NY 1012 212-423-3500 Metropolitan Museum of Art 1000 Fifth Avenue (at 2nd Street) New York, NY 1002 212-535-7710 National allery of Art 6th Street and Constitution Avenue N.W. Washington, D.C. 20565 202-737-4215 Norton Simon Museum 411 W. Colorado oulevard Pasadena, CA 91105 626-449-6 40 Philadelphia Museum of Art 2600 enjamin Franklin Parkway Philadelphia, PA 19130 215-763- 100 Tate Modern ankside London, K SE1 9T 44 20 7 7 whats-on/tate-modern/ exhibition/ey-exhibitionpaul-klee The exhibition “Paul Klee: Making isible” is on view at the Tate Modern from October 16, 2013 through March 9, 2014. This page, top left: Paul Klee, La belle jardiniere, 1939, 1237. Oil and tempura on burlap. Original frame, 95 x 71 cm. entrum Paul Klee, ern. Bottom left: Paul Klee, Insula dulcamara, 193 , 4 1. Oil and colored paste on paper on burlap. Original frame x 176 cm. entrum Paul Klee, ern. Top right: Paul Klee, Fire at Full Moon, 1933. Museum Folkwang, Essen, ermany. Bottom right: Tate Modern Turbine Hall. Photo: Tate Photography

18 • Fall 2013 Children & Creativity Issue

entrum Paul Klee and Kindermuseum Creaviva Monument im Fruchtland 3 3006 ern, Switzerland 41 31 359 0101

while working provided an excellent opportunity to get anxiety and distress out of his system.” As Klee’s scleroderma progressed, it prevented him from doing two of the things he most enjoyed: hiking and playing the violin. However, he could still paint and draw, producing larger, simpler works, and using coarser materials such as burlap. Klee’s creative responses to the new limitations on his mobility and dexterity might have inspired his declaration: “He has found his style when he cannot do otherwise.” During 1940, the year Klee died of heart failure from severe scleroderma at the age of 60, he created 366 works of art. Seventy-three years later, his art continues to inspire admirers, influencing not only visual artists, but also contemporary musicians all over the world, with its vibrant sense of rhythm, movement, imagination, and emotion. The Norton Simon Museum in Pasadena, California, has more than fifty works by Klee, including paintings, drawings and prints, and one painting by Klee’s son, Felix, made when he was 12. Leah Lehmbeck, curator for the museum, said, “ ery early on Klee recognized the value of children’s art and children’s drawings. He saw it as a sort of beginning of art.” “Klee believed that creativity resided within. True things were drawn on from nature, and nothing was ever completely

Above: Paul Klee in his studio, Kistlerweg 6, ern, summer 1939. Photograph: Felix Klee, 5.7 x .6 cm. entrum Klee, ern. ift of Klee family. Klee-Nachlassverwaltung, ern

abstract. ut the purest things were those that came from one’s self, and children are the best examples of that. They aren’t burdened by anything yet. “There is also a really nice quote of how he saw himself. He considered himself a child of this earth, yet also a child of the universe; the offspring of a star among stars.’”

The Paul Klee Center & Children's Museum Creaviva


n 2005, the Paul Klee Center (Zentrum Paul Klee) opened on the outskirts of Bern, Switzerland, designed by Italian architect Renzo Piano to look like a trio of rolling glassand-steel hills, housing close to four thousand works by Klee. Among the works on display are nearly 50 hand puppets Klee made for his son, Felix. One of the center’s most popular areas is its Children’s Museum, Kindermuseum Creaviva. Kindermuseum Creaviva Project Manager Sara Stocker said, “Paul Klee was not only a painter, musician and writer; he was also an excellent teacher. The idea for a Children’s Museum is to give children, teenagers and adults access to art and culture, and allow them to discover their own creativity on the basis of Paul Klee’s works. “Creaviva’s workshops are its foundation. Children and adults can work in the Open Studio under the guidance of an art instructor, and participants can take home artwork they have created in the workshops. Creaviva’s 'Klee Without Barriers' offers workshops tailored to individual needs for people with disabilities.The interactive exhibition in Creaviva’s loft invites participation in playful discussions about art. It’s all about imagination, curiosity, the exciting journeys, and the joy that’s felt in one’s creation. “The Children’s Museum Creaviva promotes Klee's playful, experimental, humorous approach to art. 'Creaviva' was formed from the Latin words for 'create' and 'lively.' This can be translated as 'a lively place of creativity.' Long live creativity!”

—Translation by Sabrina I. Parmelee

Creaviva Open Studio, entrum Paul Klee. Photograph: Miriam Loertscher. © Creaviva


Th is page: Hartsfield-Jackson Atlanta International Airport. Opposite page: Len Geiger self-portrait at 30,000 feet


iagnosed with alpha-1 antitrypsin deficiency in 1994, at the age of 35, Len Geiger underwent a life-saving doublelung transplant in 2002 and titanium hip replacements in 2000 and 2004. In 1992, a very physically active and otherwise fit Geiger experienced his first symptoms of alpha-1 when he found himself struggling to climb a ski slope. Stubborn, recurring bronchial infections, and painful shortness of breath when exercising followed. His physician prescribed an inhaler, believing Geiger's symptoms to be those of asthma, but his breathing only worsened. As his symptoms grew increasingly debilitating, he found himself unable to walk his parents across a parking lot to their car. Another physician finally tested Geiger for alpha-1 and gave him the diagnosis that initially sent him reeling. Time was running out for Geiger when he got a phone call letting him know that lungs that matched his immune system were available from a 14-year-old organ donor. Believing that his quality of life had deteriorated to the point that he had no other viable options, he decided to undergo the transplant. Geiger's transplant was a resounding success. He began working out again, then mountain biking. However, three Continued on page 22


months after the transplant, a mountain biking accident fractured his left femur in three places, and in a terrifying twist, Geiger's immune system started to reject his new lungs. Geiger survived, but, realizing that he had been overdoing it, dialed down the intensity of his physical activities. He remains driven and active, in excellent health, channeling his energy into less physically punishing passions, including photography. Now, in his frequent travels as an alpha-1 advocate, speaker, and consultant, Geiger is always looking for opportunities to take photos. He spoke to Community about his photography and about exploring creative freedom when living with chronic disease. Geiger humbly describes himself as “just a guy who likes to take pictures” not “a real photographer.” We beg to differ. —EL


y grandfather was a professional photographer with a studio in Atlanta, and my father collected antique cameras. I suppose I was destined to become interested in photography at some point. When I was in high school, I interned with a photographer from a local newspaper. He taught me how to develop and print black-and-white photos. Dodging and burning were a real art form. Photography has been something I’ve been in and out of much of my adult life, but I don’t consider myself to be 'a real photographer'—just a guy who likes to take pictures. I’ve always enjoyed gardening. When I was sick, before the transplant, I took up bonsai to stay busy and keep my mind off of my illness. Unfortunately, during a couple of extended hospital stays, all my plants died. I’m so busy and travel so much post-transplant, I just don’t have the time to start over with bonsai. I’m an opportunist when it comes to photography. I don’t generally seek out subjects to shoot, but certainly don’t shy away from taking pictures if the right chance presents itself, assuming I have a camera with me. My dream would be to plan the time, or possibly even a trip, just for the purpose of taking photos. I can’t count the number of houses, scenes and people I’ve wanted to take shots of, but couldn’t due to lack of time. As for my inspiration in photography and in life, I’m in awe of my family. Our daughter, Ava Corinne, is my favorite subject. I also travel a great deal, much of it by plane. The sky is always blue at 35,000 feet!


If you’re dealing with a chronic illness and feel a desire to do something creative, go for it! I’ve never been a terribly artistic person. I draw in stick figures, so more technical aspects appeal to me. Pens and brushes are not my friend, but a camera can better translate my intent. Some of my favorite photographs are Henri Cartier-Bresson’s quirky portraits and street shots, Ansel Adams’ incredible landscapes, Edward Weston’s still-lives, and Instagram’s Tony Detroit, whose pictures, intentionally or not, document the incredible sadness of the city of Detroit. His photos will move you. Also, pretty much any photo of my daughter. I had a Nikon DSLR that got me back into photography; sadly that camera was stolen several years ago. Working with high-quality digital images was incredible. The digital format’s flexibility and immediacy meant the freedom to take many, many photos and to learn on my own to take better ones. I replaced that camera with an amazing little subcompact, the Canon S95. It needs to be repaired, so I’m limited to taking photos with my iPhone. The iPhone has changed the way people take pictures. They say the best camera is the one you have with you, and most people keep their cell phones handy. The availability of Instagram and other • Fall 2013 Children & Creativity Issue

photo applications has become a great way for people to express their creative side without having to spend a fortune. These days I spend more time working hard in the yard, playing with my daughter and walking rapidly through airports than I do consciously exercising. I take advantage of hotel gyms when I

can, but probably should exercise more, despite the heavy travel. There can also be a great deal of mental pressure when you’re traveling a lot. The key is how you handle it. It’s easy to feel out of sorts when your plans are interrupted, but the key is to find out what, if anything, you can do about it. Get it done, and then relax. Life is a journey, not always a destination. Chill out, and embrace your journey. —Len Geiger

Opposite page: Geiger’s daughter Ava, Oneida Community Mansion House, Oneida, New York. Th is page, top left: Detroit Metro Airport moving sidewalk. Top right: Ava finds a shell at the beach. Bottom right: Exhibit, Museum of Contemporary Art, Jacksonville, Florida. Bottom left: Ava graduates from kindergarten. Photos: Len Geiger.



Thomas L. Spray, M.D.

Thomas L. Spray, M.D., is chief of the Division of Cardiothoracic Surgery at The Children’s Hospital of Philadelphia, director of the hospital’s Thoracic Organ Transplantation Program, and Professor of Surgery at the University of Pennsylvania School of Medicine. Community recently interviewed Dr. Spray about pediatric lung transplantation.

What are the most important considerations for parents when making decisions about pediatric lung transplants? The fundamental issue here is that, lung transplantation is, unlike heart transplantation, not associated with as good long-term survival. In some ways it’s somewhat palliative. Five-year survival for lung transplant is about 50 percent. And despite lung transplants being around now for about 25 years, there hasn’t been a lot of improvement in survival. The lung is an immunocompetent organ, unlike most other organ transplants. It has the disadvantages of being connected to the outside, so it’s always at risk of infection. Also, there are lymph nodes in the lungs, which probably make them more susceptible to rejection and latent chronic rejection, which is where most lung transplants eventually fail; something called bronchiolitis obliterans—scarring of the small airways of the lungs—which is thought to largely be a chronic rejection problem. Having said that, there are isolated patients who do extremely well and do well over the long term, but if you just take the averages, the average survival is about five years. So that’s the disadvantage. On the other hand, for many patients, especially pediatric patients, their survival is going to be measured in a matter of a year or less if they don’t get a lung transplant. So it’s successful, but it’s not perfect by any means. It’s generally very much palliative for children as well. 24

To what degree should the child be involved in the decision? To what degree the child should be involved in the decision is somewhat age-dependent. When you have a lung transplant, you’re basically exchanging one disease for another one, because you then have to be on medicines to prevent rejection, and you have a certain amount of medical surveillance necessary. Unfortunately lung transplantation is still a procedure that has a significant risk associated with it. The lungs cannot work sometimes. The outcome cannot be positive if you get a viral infection of the transplant early on—it can destroy the lungs. And that’s very hard for anyone to survive. I can remember some patients though, with cystic fibrosis, after lung transplant, even when the lungs went bad, and they ultimately died, having said during the time they were alive, that it was worth everything just to breathe normally for a change. So you have to put it in perspective. When you get into the teenage years, I think it’s appropriate for the child to be involved in the decision. I think it’s especially important for teenagers, who unfortunately have a fairly high risk of not being compliant with medical management, and then they reject their organs and die. Just being an adolescent is a risk factor for transplant, it appears. It’s a difficult time. That’s why when you’re talking teenagers, it’s very important that they be involved in the decision process, so that they recognize that they have to be involved in the medical management. They have to take their medicines faithfully. They have to be seen frequently. And if they aren’t willing to do that, then it’s kind of foolish to go down that pathway. What have been some of the advances in pediatric lung transplantation? Most of the advances in transplantation, • Fall 2013 Children & Creativity Issue

in terms of survival, over the last 15 years, have been at the early period after transplant. In other words, we’ve been able to transplant more complex patients, who’ve had multiple previous operations, who were sicker waiting for transplant. We’ve evolved to the point where it’s now possible to support patients on an assist device called ECMO while waiting for transplant and still have them able to be up and around and maintain their ability to breathe, so that it makes it easier after the transplant. So there are some advances, but there haven’t been any major advances in immunosuppression. We have experience now transplanting newborns all the way up to adults. We’ve had experience with many kinds of complex congenital heart disease and lung transplants. We have experience in pulmonary hypertension. Those are the more common causes in children. I think it’s important to note that in the pediatric world, the most common indications for transplant are considered the higher risk indications in the adult world. For example, in adult lung transplant, the most common indication is emphysema. Emphysema is a more straightforward condition to treat with lung transplant than any of the diseases that we see in children, and emphysema is virtually unheard of in children, so pediatric transplant by its very nature is a higher risk population. What percentage of pediatric transplant patients have pulmonary hypertension? At The Children’s Hospital of Philadelphia, at least 50 percent or more have congenital heart disease or pulmonary hypertension, and relatively fewer have cystic fibrosis. Part of that is because the management of cystic fibrosis has improved over the years such that there are relativity fewer children who require transplantation for cystic fibrosis than in the past. So, most people with cystic fibrosis can get to adulthood before they have enough lung deterioration to

require transplant, and therefore get transplanted in adult centers now. When we first started doing lung transplant in about 1990, when I was in St. Louis, cystic fibrosis was a common indication, because children under 18 with severe cystic fibrosis would come to St. Louis for transplant. In Philadelphia, we see less of that and more pulmonary hypertension and congenital heart disease. What drew you to the lung transplantation field? I started out as a congenital heart surgeon. Congenital heart surgeons all have to be adult heart surgeons fi rst. I did adult and congenital heart surgery at St. Louis Children’s Hospital. I was recruited to come here to take over from William Norwood, a very well known surgeon, who went to Europe to start a new program. When I came to Philadelphia, there wasn’t a lung transplant program in

this area. So I started a pediatric lung transplant program when I came in 1994, having started the program in St. Louis in 1990. I think my interest in lung transplant came from patients I saw in St. Louis who had no real, good option for repair of their heart, because they didn’t have good lungs to push blood into. There are certain types of congenital heart disease where that’s the case, where you could repair the heart defect if you had pulmonary arteries to pump blood into. But children who don’t have that became progressively more cyanotic. I saw some of these children and I thought, 'If we could just put new lungs in, we could fi x the heart.' So that’s what got me interested initially, and then that expanded to all the other potential reasons for lung transplant, of which there are many. What are some of the differences in quality of life after a successful pediatric lung transplant? Quality of life depends on the patient’s condition before the transplant, but the majority in the pediatric population

are extremely debilitated. They often have cystic fibrosis. They’re chronically infected. They have poor lung function. They have very little exercise tolerance. Patients with PH may have heart failure also. So the quality of life prior to transplant is very poor. The waiting times are so long for lung transplant that most children deteriorate significantly while waiting in the hospital. They’re sometimes waiting in the hospital for a year or more. So the quality of life after transplant, while vastly improved, takes a while for them to recuperate. I think what people often don’t realize is that if you’re sick for months and months prior to lung transplantation, there’s a lot of rehabilitation necessary. Even after a successful lung transplant, it’s not like patients are going home in a week. Many of them have to stay in the hospital for months while they’re literally recuperating and rehabilitating themselves from being chronically ill for the previous several years. Continued on page 26 Patient room (left) and art therapy (below) at The Children s Hospital of Philadelphia.

All photos courtesy of The Children's Hospital of Philadelphia.


might become available. There are times when organs are available, and we tentatively accept them, and then they deteriorate to the point that we can’t use them. So the families have situations where their hopes are raised that they’ll have a transplant, and then it falls through, and then they’re back waiting again. So it’s a difficult thing for the families. I think the families need to recognize that donor organs are hard to come by; they’re very scarce. The organ system is as fair and open as people can make it. It’s constantly trying to be as completely open and straightforward as possible and to not disadvantage anybody and make everybody on an equal playing field. But these are difficult things sometimes. Transplantation in some ways is kind of a fundamentally flawed strategy, because you have to have a tragedy to have a miracle. Someone has to die for organs to be available, and as a physician and surgeon, I don’t want anyone to die. In a way, I don’t want there to be more donors. On the other hand, I think the donors who are available should be used as maximally as possible, because there are so many children who need the organs. It’s a constant battle to try to use every organ you possibly can. But then some of them have problems and don’t work. That’s unfortunately the chance you take.

Art therapy at The Children s Hospital of Philadelphia

How much interaction do your patients have with the Child Life, Education and Creative Arts Therapy department at The Children’s Hospital of Philadelphia? They have a great deal of interaction, especially while waiting. Children who are sick and in the hospital and literally waiting for sometimes months and months for organs to become available need that kind of interaction. They need to have play. They need to have creative interactions, and that’s why the Child Life Department is so important for all the patients in the hospital, but even more important for those who are chronically in the hospital for long periods of time. They need to have that kind of stimulation. They need to be able to be involved in arts and crafts to keep them occupied, literally, to help them develop while they’re waiting. What are some ways that families can cope with being on a waiting list? Everyone, I think, does that differently. I think it’s always difficult for families to recognize that a waiting list is exactly that. You have no idea when organs 26

What programs are in place at The Children’s Hospital of Philadelphia to help families afford the cost of pediatric lung transplants? There’s a whole process before someone is listed for transplantation that involves evaluating their financial situation. The hospital has many programs to try to get them into programs that will provide coverage. Because it makes little sense to do a lung transplant if you have no coverage for medications after the transplant, which happens in some crazy • Fall 2013 Children & Creativity Issue

insurance arrangements. The hospital sometimes will help families get Medicaid or some other government program that will at least provide them with follow-up medications and follow-up care. There’s a whole financial counseling group that works with families in relation to transplant, because you have to recognize it’s not a one-time deal. It’s like a new disease, if you will, transplantation. What else is important to stress about how pediatric lung transplants are different from adult transplants? The diseases are different, and they’re more complex. Many of the [pediatric] patients have had previous surgeries, which complicate the transplant significantly, in terms of bleeding and other issues. I’ve said many times that the hardest part of transplantation is not putting the new organs in; it’s getting the old ones out. That can be extremely difficult due to the scarring and inflammation and previous infections. It can sometimes be extremely difficult just to get the old organs out without damaging other important structures. They can all be stuck together in the chest. That’s one major challenge with lung transplant, especially in children. It’s not as common in adults. Most of the adults with emphysema have not had significant previous surgeries; they don’t have a lot of extra blood vessels. Many of the children who need transplant are also ‘blue.’ They’re cyanotic. They don’t have normal oxygen levels. That stimulates development of blood vessels in the chest that can be very difficult to control at the time of transplant, and bleeding is much more of an issue. Then of course we’re dealing with different sizes. In adults, they’re using mostly adult lungs and some teenage lungs. But in pediatric transplantation, we have to list patients in a very discrete size range, because we do transplants in patients all the way from newborns up to adult-size teenagers. So we have to have the ability to put very small lungs in small children. We do occasionally use lobes or parts of lungs from adults in small children, which is something the adult world rarely, if ever does, because we have to deal with this wide size range.



Wow! The Computer Designed for You, Not Your Grandchildren! Easy to read. Easy to see. Easy to use. Just plug it in!


Touch Screen Technology One-touch “zoom” magnification Big Bright Screen No bulky tower U.S. Based Customer Service Simple navigation so you never get lost


Automatic Software Updates

Have you ever said to yourself “I’d love to get a computer, if only I could figure out how to use it.” Well, you’re not alone. Computers were supposed to make our lives simpler, but they’ve gotten so complicated that they are not worth the trouble. With all of the “pointing and clicking” and “dragging and dropping” you’re lucky if you can figure out where you are. Plus, you are constantly worrying about viruses, spam and freeze-ups. If this sounds familiar, we have great news for you. There is finally a computer that’s designed for simplicity and ease of use. It’s the WOW Computer, and it was designed with you in mind. This computer is easy-to-use, worry-free and literally puts the world at your

fingertips. From the moment you open the box, you’ll realize how different the WOW Computer is. The components are all connected; all you do is plug it into an outlet and your high-speed Internet connection. Then you’ll see the screen. This is a completely new touch screen system, without the cluttered look of the normal computer screen. The “buttons” on the screen are easy to see and easy to understand. All you do is touch one of them, from the Web, Email, Calendar to Games– you name it… and a new screen opens up. It’s so easy to use you won’t have to ask your children or grandchildren for help. Until now the very people who could benefit most from E-mail and the Internet are the ones that have had the hardest time accessing it. Now, thanks to the WOW Computer, countless older Americans are discovering the wonderful world of the Internet every day. Isn’t it time you

took part? Call now, and a patient, knowledgeable product expert will tell you how you can try it in your home for 30 days. If you are not totally satisfied, simply return it within 30 days for a refund of the product purchase price. Call today. • Send & Receive Emails • Have video chats with family and friends • Surf the Internet: Get current weather and news • Play games on line: Hundreds to choose from! Call now and find out how you can get your own WOW! Computer. Mention promotional code 50738 for a special introductory pricing.

1-888-801-1408 © 2013 by firstSTREET for Boomers and Beyond, Inc.


“I love this computer! It is easy to read and to use! I get photo updates from my children and grandchildren all the time.” – Janet F.

Legal Corner: Children’s

THE KIDS ARE CVC Health Care Attorney Stephanie Posuniak explains an affordable children’s health insurance option for families who don’t qualify for Medicaid.


ulie is a 30-year-old single mother of Mason, age six. She earns $30,000 annually and lives in the state of Michigan. Her employer does not offer health insurance and, like most parents, she is more concerned with finding affordable coverage for Mason than for herself. Where can she turn for assistance? Although most Americans are aware of public health programs such as Medicare and Medicaid, not as many know about another insurance option for children, known as the Children’s Health Insurance Program (CHIP). This article will explore what CHIP is, what it offers, who may be eligible, and ways the Affordable Care Act benefits children through programs such as CHIP.

On August 5, 1997, President Clinton signed the State Children’s Health Insurance Program into law. Also known as “CHIP,” the Children’s Health Insurance Program provides affordable health coverage for children in families who do not qualify for Medicaid. Although programs vary by state, all CHIP programs offer the following coverage:

■ Routine check-ups ■ Immunizations ■ Doctor visits ■ Prescriptions ■ Dental and vision care ■ Inpatient and outpatient hospital care ■ Laboratory and X-ray services ■ Emergency services CHIP funding comes from both the federal and state governments, much like Medicaid. However, CHIP differs from Medicaid in that it receives about 15 percent more federal dollars than Medicaid programs. For example, in 2012, the federal government matched Michigan’s CHIP by 76.3 percent and Medicaid by 66.14 percent. The reasoning behind this difference is to encourage states to expand their Children’s Health Insurance Program. States can operate their CHIPs as separate from, in combination with, or as an expansion of their Medicaid

28 • Fall 2013 Children & Creativity Issue

Photos: (Top) Centers for Disease Control and Prevention (CDC)/Amanda Mills; (center and bottom) NIAMS, NIH

Overview of CHIP

Health Insurance Program (CHIP)

ALL RIGHT programs. Right now, 16 states operate CHIP separate from Medicaid, which means families who vacillate between Medicaid and CHIP eligibility must navigate two separate programs. Similarly, these states are charged with operating two distinct programs while keeping track of which children qualify for Medicaid versus CHIP. On September 3, 2010, the Secretary of the Department of Health and Human Services (DHHS), announced the “Connecting Kids to Coverage Challenge,” an initiative to enroll five-million children in Medicaid and CHIP within five years. Some strategies of the challenge included: simplifying enrollment, maximizing use of technology for enrollees, expanding ways for families to apply, improving ways to maintain enrollment, and bolstering partnerships with outside entities to further enrollment. One way some states are maximizing enrollment in CHIP is by authorizing certain entities (for example, health care providers and schools) to screen for CHIP eligibility, a concept known as “presumptive eligibility.” Health care providers and schools can then immediately enroll children in CHIP, with no need to wait for their applications to be processed. The following states use presumptive eligibility in their CHIPs: California, Colorado, Illinois, Iowa, Kansas, Massachusetts, Michigan, Montana, New Jersey, New Mexico, New York, and Ohio. Another way to expedite enrollment in CHIP is the “Express Lane Eligibility” program, which allows other agencies such as Temporary Assistance for Needy Families (TANF) and Women, Infant, and Children’s program (WIC), to streamline enrollment in CHIP. The following six states offer Express Lane Eligibility: Alabama, Iowa, Louisiana, New Jersey, Maryland, and Oregon. Other ways states secure enrollment in CHIP include: 1) allowing for continuous CHIP coverage for a 12-month period, despite fluctuation in the child’s household income and 2) providing CHIP to lawfully-residing immigrant children and pregnant women. Who is Eligible for CHIP? Eligibility requirements for CHIP vary by state; however, the basic CHIP requirements are: 1) the enrollee is under 19 years of age; 2) a citizen or lawfully admitted alien; and 3) uninsured. Most states (46, to be exact) and the District of Columbia allow CHIP coverage to children with income at or above 200 percent of the Federal Poverty Level (about $31,020 for a household of two).

How Else Does the Affordable Care Act Benefit Children?

One goal of the Affordable Care Act is it to improve and extend the availability of public health insurance programs. For example, the Affordable Care Act prolonged funding for CHIP and provided $40 million to continue to promote enrollment in both Medicaid and CHIP. Other ways the Affordable Care Act benefits children include:

■ Expansion of Medicaid coverage to individuals with up to 133 percent of the Federal Poverty Level. Therefore, parents who once were ineligible for Medicaid may now qualify under the recent health care reform.

■ Allows for coverage of dependent children on their parent’s insurance, up to the age of 26.

■ Prohibition of health insurers from denying coverage to children because of a child’s preexisting health condition.

■ Through the Childhood Obesity Demonstration

Project, the Secretary of DHHS will award grants to develop a model for reducing childhood obesity.

■ Requires new health insurance plans to cover prevention and wellness benefits to children.

■ Establishes health insurance Exchanges, which

allow for a one-stop-shopping venue for families to find health insurance.

If you’re interested in enrolling in CHIP, Medicaid, or another public health program, contact your state’s health and human services agency. Depending on the state, you may be able to apply online, via telephone, or in-person. You can find your local Human Services department contact information by accessing this website: recovery/statewebsites.html. Do you have legal questions? Send them to, and we’ll answer them here.


with Maria Berg

Maria and Alan Berg’s decision to adopt her grandnephew and grandniece meant relocating to the Philippines for two years. And Maria wasn’t about to let her pulmonary hypertension stop them from doing so, or prevent her from living life to the fullest.


have pulmonary arterial hypertension, but I’m leading a full life. I am perhaps what my pulmonologist calls ‘an anomaly.’ Whereas PH patients may have a life expectancy of about five years after diagnosis, I have lived with PH for the past 21 years. How can I explain this good fortune? I was fortunate that the condition was diagnosed at an early stage and that I received effective medication for it while working overseas in Dubai, United Arab Emirates.

Top photo, clockwise from right: Maria, Shohini, Miko, and Alan Berg at a zoo near Manila. Bottom photo: The Bergs

Th rough my pulmonologist’s efforts, my condition has been effectively monitored and treated. He is more to me than a physician; he has become a confidant and trusted friend, and has always been there for me. When my husband and I decided to adopt, we had to live in Manila, Philippines for two years in order to establish 30 • Fall 2013 Children & Creativity Issue

residency to obtain legal and physical custody of our adopted son. While I was away, my pulmonologist always kept in touch and was instrumental in providing me with essential medication. I fi rst learned about Caring Voice Coalition through his office. I had undergone several tests to determine the type and dose of medication I needed. I then found the CVC website, completed the financial aid application, and received a grant to help pay for my PH medication. My case manager at CVC also assisted us by writing to the U.S. Immigration Service about my condition in the hope that I could avoid a prolonged stay in the Philippines. However, this appeal was denied, so we had no choice but to remain abroad for almost two years. My major concern was how I would be able to obtain my medication from the United States during our extended stay abroad. However, CVC worked with my pulmonologist and pharmacy to arrange delivery of the medication to the Philippines. Caring Voice Coalition is also responsible for my ability to lead a full life. My case manager at CVC has been incredibly helpful and inspirational during these past years. She also helped greatly during my stay in the Philippines—even with the adoption issue—and has always been extremely encouraging. With PH, having the right frame of mind is important. Don’t get me wrong; I’m not an Olympic athlete, and I have bad days when my heart seems to race, and I have some trouble catching my breath. I have difficulty climbing stairs and hills, but I try to think positively and be thankful for what I can do. I’m glad that I can walk for some distance, as I did when visiting Disney World and Universal Studios. I’m happy that I can be a good wife, and a good mom for our Miko, now 13 years old. (In fact, we’re expecting another adopted child soon: Miko’s sister, Shohini, age 11.) I’m fortunate. Despite PH, I’m able to lead a full life and experience the joys of marriage and motherhood. I so hope that my words are inspirational to others, who, like myself, are coping with this serious medical condition. Have faith in yourself and your doctors—and always keep your eyes on the horizon.

Every family can use some help. Introducing COMPASS Support Services for patients in need of ACTIMMUNE® (interferon gamma-1b) therapy.

COMPASS (Comprehensive Personalized Patient Prescription Advocacy & Support Services) provides patients, families and healthcare providers with one-stop, convenient access to a variety of support services and programs at no cost, such as: • Reimbursement Hotline • Co-Pay Assistance Program

• Patient Assistance Program • Syringe Disposal Program

Call 877.305.7704 Talk to our Reimbursement Case Advocates for answers to your important questions. We’re here Monday through Friday from 8:00 AM to 6:00 PM Eastern time.

ACTIMMUNE® is indicated for: Chronic Granulomatous Disease: ACTIMMUNE® is the only therapy currently approved by the U.S. Food and Drug Administration to reduce the frequency and severity of serious infections associated with Chronic Granulomatous Disease (CGD). CGD is a genetic disorder that affects the functioning of some cells of the immune system. Severe, Malignant Osteopetrosis: ACTIMMUNE® is also the only medication approved by the U.S. Food and Drug Administration to slow the worsening of Severe, Malignant Osteopetrosis. Severe, Malignant Osteopetrosis is also a genetic disorder that affects normal bone formation. Important Safety Information for ACTIMMUNE® ACTIMMUNE® is contraindicated in patients who develop or have known hypersensitivity to interferon-gamma, E. coli-derived products, or any component of the product. The most common adverse experiences occurring with ACTIMMUNE® therapy are “flu-like”, or constitutional symptoms such as fever, headache, chills, myalgia, or fatigue, which may decrease in severity as treatment continues. Some of the ‘‘flu-like” symptoms may be minimized by bedtime administration of ACTIMMUNE®. Acetaminophen may be used to prevent or partially alleviate the fever and headache. Reversible neutropenia and thrombocytopenia have been observed during ACTIMMUNE® therapy and caution is advised in patients with myelosuppression. Caution should be exercised when administering ACTIMMUNE® in combination with other potentially myelosuppressive agents. Reversible elevations of AST and/or ALT have been observed during ACTIMMUNE® therapy. Patients begun on ACTIMMUNE® therapy before one year of age should receive monthly assessments of liver function. If severe hepatic enzyme elevations develop, ACTIMMUNE® dosage should be modified. See full prescribing information for further details of warnings and precautions at Sponsored by Vidara Therapeutics Inc. © 2012 Vidara Therapeutics Inc.

Caring Voice Coalition 8249 Meadowbridge Rd Mechanicsville, VA 23116

Non-Profit U.S. Postage PAID Richmond, VA Permit #2367

We’re Here to Help The Diseases We Support

Who We Are

• Congenital Factor XIII Deficiency

Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization that improves the lives of patients with chronic illnesses. We do this by offering financial, emotional, and educational support.

• Infantile Spasms

How We Help

• Alpha-1 Antitrypsin Deficiency

• Chronic Granulomatous Disorder • Complex Partial Seizures • Huntington’s Disease • Narcolepsy

• Pulmonary Hypertension

CVC’s programs are a direct response to patient needs. In addition to medical and financial challenges, chronically ill patients face significant obstacles to starting and remaining on therapy. Our programs remove those obstacles.

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals

• Social Security Disability • Patient Education

Contact Us 1-888-267-1440

Visit Us Online


COMMUNITY Magazine, Fall 2013 - The Children and Creativity Issue  

Caring Voice Coalition's quarterly magazine - the fall 2013 Children and Creativity issue