COMMUNITY Magazine, Summer 2012 - Diary of a R.E.M. Runner

Volume 1 • Issue 2 • Summer 2012

Diary of a R.E.M. Runner Julie Flygare’s Fight for Narcolepsy: From the Streets of the Boston Marathon to the Steps of Capitol Hill

pg. 16

Breaking the Cycle:

A Caregiver’s Generational Battle with HD

Your Guide to Summer Travel The Psychology Behind Medication Adherence The Quarterly Publication of Caring Voice Coalition, Inc.

The Diseases We Support

who is Caring Voice Coalition?

Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization established in 2003 to provide financial, insurance education and patient support to individuals diagnosed with specific chronic or life-threatening diseases. CVC seeks to empower these patients by providing comprehensive programs delivered through a holistic approach by a staff of knowledgeable, dedicated and caring individuals.

How We Help Financial Assistance Financial Assistance in the form of monetary grants, is provided to eligible patients to help remove the barriers to starting or remaining on therapy.

Insurance Education & Counseling Insurance Education & Counseling offers both Alternate Coverage and Social Security Disability & Appeals Assistance to help you gain a better understanding of insurance and help appeal any denials of coverage you may be faced with.

Patient Support Patient Support helps patients identify public and private programs and services that may be of benefit to them.

Call Toll Free 1-800-267-1440 More information about CVC can be found on page 33.

Cover Story

In Sickness and In Health How one young woman owns her Narcolepsy, and not the other way around

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A Guide to Huntington’s Disease Patients, caregivers, and physicians discuss and dissect Huntington’s Disease

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Letter from the President An introductory letter from Pam Harris

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ontents Your Guide To Summer Travel A travel guide for chronically ill patients and their caregivers alike

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Department Spotlight Highlighting CVC’s Disability and Appeals Department

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Making the Right Investment What to do after losing your health insurance

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Community Marketplace Six new products to help make your life easier

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Why Patients Resent Their Medication

CVC at a Glance

The psychology behind why people don’t take their medications as prescribed

Who we are and what we do

Social Security Disability

In Their Words

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20

The importance of using a wellness journal

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Helping People Together Q&A with Rich Sagall, President of NeedyMeds

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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.

Copyright: Caring Voice Community is produced by Caring Voice Coalition, Inc. – Copyright ©2012

Alpha-1 patient Matthew Pless

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Benefits of a Support Group What starting (and attending) a support group can do for you

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Please Recycle this issue.

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You shop.

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We’d like to hear your feedback on this issue.

What did you like or dislike?

Submit your comments to magazine@caringvoice.org

Staff Publishers Pamela Harris

pharris@caringvoice.org

Samantha Harris

sharris@caringvoice.org

Editor in Chief Alex Withrow

888.267.1440 x 144 awithrow@caringvoice.org

Artistic Director Taylor Scott

888.267.1440 x 117 tscott@caringvoice.org

Advertising Representative Josh Smithmier 888.267.1440 x 146 jsmithmier@caringvoice.org

Contributors Julie Flygare

In Sickness and In Health

Terri Seargent

The World Over

Suzanne Flood

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Letter from the Editor

ince becoming Editor of this magazine, fortune has befallen me in a number of ways. I’ve had the opportunity to meet and interview some truly amazing people – individuals who have suffered and endured and persevered through more than I can imagine. And the fact that they’re willing to tell me all about it is something I find incredibly moving.

The readership response from the first issue of Caring Voice Community has been unanimously positive, the credit of which belongs to our many contributors, our loyal staff, and, of course, the patients themselves. For this current issue, we wanted to try something a little different. Occasionally, the best way to tell a person’s story is to have the subject do the talking, so when Julie Flygare told me she’d be interested in writing our cover story, I jumped at the chance.

Julie is a notable blogger who has spent the better part of her adult life advocating for Narcolepsy, which, due to her drive, passion, and talent, is something she’s able to do on a national level. She’s run marathons on the streets of Boston and marched on the steps of Capitol Hill, all while having a disease that should, quite literally, keep her down. I’m honored to include her in our publication.

In addition, this issue features an expansive guide to Huntington’s Disease, which includes my piece on Cheryl Sullivan Staveley, a woman who fights tirelessly to increase awareness about a disease that has followed her for the majority of her life.

I want to personally thank our readers and patients for their loyal, outspoken support. Every letter and e-mail we receive about this publication humbles us in ways I’m not able to fully articulate. We write this for you, and the fact that it is well received simply makes it worth it.

If you have a story to tell, we want to hear it. Feel free to contact us anytime, and we will do everything in our power to do your story justice. In fact, we may just ask you to write it, because if there’s one thing I’ve learned, sometimes it is better to let people tell you their stories themselves.

Alex Withrow Editor in Chief

PHA On The Road

Debbie Castro

Last Night A Support Group Saved My Life

Thao Trang

Graphic Artist

Tonopah Medical LLC 800 E. Charleston Blvd. #1036 Las Vegas, NV 89104 Phone: (888) 410-6566 • Fax: (888) 848-6888

Mark Your Calendar Upcoming Events

July

July 27-29 - Scleroderma National Conference, Grapevine, TX

August

August 12 - Swim For Caring Voice, Walled Lake, MI

Letter

from the

H

President

appy Summer Everyone!

When I founded Caring Voice Coalition in 2003, my personal goal was to produce the highest level of programs and services that would enable chronically ill patients to have access to healthcare. It was my intention to allow patients to quickly start and remain on their lifesustaining, prescription medications. Although much has changed in the health care industry since 2003, CVC has remained committed to the system of belief under which we were founded: access to quality care for the most vulnerable populations – the uninsured and underinsured patient.

CVC Named a Top Non-Profit to Work For

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n a poll conducted by The NonProfit Times, the selfdescribed leading business publication for non-profit management, Caring Voice Coalition ranked 41 on the top 50 list, and 18 in the medium organization category. In an accompanying article for the ranked list, The NonProfit Times highlighted how CVC’s servantleadership business environment has made it the organization it is today.

“The idea of getting everyone involved has worked well for CVC,” the article states. “CVC expects employees to have a passion for the type of work it does, be committed to lifelong learning and be willing to go above and beyond each day for patients.”

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Summer 2012

In my experience, I have found that most chronically ill patients have a multitude of health issues. Addressing these issues through various channels such as active listening, disease, product and insurance education, financial assistance and a team of professionals who are willing to go the extra mile for each patient, can greatly improve the chance of positive outcomes for the patient, while remaining compliant on their therapy. This is exactly what Caring Voice Coalition’s programs have achieved over the years. Positive feedback from patients and practitioners across the nation have already confirmed that a high-touch, patient-centric approach works best for patients who are faced with chronic conditions.

This past April, our organization was recognized nationally as one of the 50 best nonprofits to work for by the Non-Profit Times. We were able to receive this honor by selecting exceptional team members who are committed to our core value of servant leadership, a lifetime learning approach, and a willingness to go above and beyond for each and every one of our patients. In 2012, our exceptional team members welcomed more than 35,000 patients into the CVC family and have now been recognized nationally for the level of care and compassion that they provide not only to patients, but also to each member of the CVC team. The Caring Voice Coalition family is made up of administrative team members, case managers, pharmacists, attorneys, grief counselors, CPA’s and IT professionals – all committed to serving our patients.

In closing, I’d like to share one of those gratifying moments in my life when a team member, relatively new to CVC, told me just how much she enjoys working with our patients.“It’s unbelievably fulfilling,” she said. “I feel like we’re doing something that really makes a tangible difference, not only for each patient but also for each member of CVC – the experience is life-changing!”

That statement pretty much sums up what CVC is truly all about – providing the highest level of programs and services which enables our patients to have access to health care so they might be able to quickly start and remain on their life-sustaining, prescription medications so that they might “get back to life!”

Best wishes for a healthy summer.

Pam Harris Cofounder & President

visit us at

www.CaringVoice.org

FEEDBACK

Comments From Readers

We Welcome Your Comments and Questions

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@CVCinc

magazine@caringvoice.org

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want to take a moment to thank all of those who have graciously supported our magazine. We have had such positive feedback regarding our first issue and would love to continue to provide education, resources and intriguing information to our readers.

Living life with a chronic illness is not always easy. Because of that reality, we recognize that at times you need someone to come alongside to encourage, guide and support you in your journey. Caring Voice Community is a magazine specifically focusing on the needs of patients, caregivers and physicians. We could not complete our mission of strengthening our community and uplifting the human spirit without the kind support from understanding and caring people who value the gift of giving.

We thank you for your generosity and support.

Sincerely,

Letter from the Vice President

Samantha Harris, Vice President

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A Guide To Huntington’s Disease

HD patient Meghan Sullivan with her dog, Seamus. For more on Meghan, visit page 8.

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Summer 2012

WHATis...

Huntington’s Disease Huntington’s Disease is a disorder passed down through families in which nerve cells in certain parts of the brain waste away, or degenerate.

Chorea (symptom)

Chorea is an abnormal involuntary movement disorder associated with Huntington’s Disease as a primary symptom

f

acts: If one of your parents has Huntington’s Disease, you have a 50 percent chance of inheriting the gene for the disease Common symptoms of Huntington’s Disease range from behavior disturbances in mood, abnormal physical movements, dementia and restlessness

Photo by Alex Withrow

contents

There are approximately 30,000 Americans currently living with Huntington’s Disease.

Courtesy of ncbi.nim.nih.gov

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Do Everything You Can as

by Alex Withrow Long as You Can One woman’s generational battle with Huntington’s Disease

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C

heryl Sullivan Staveley was 21 years old when she first heard of the disease that would end up following her forever. At that time, Huntington’s Disease (HD) didn’t have a discovered gene, and was often misdiagnosed.

So, in a liberal sense, Cheryl has been battling the same disease since before it existed. It’s a disorder that has claimed the life of her husband, while currently controlling one of her daughters, and resting idly within the other. It’s a disease that has shifted her perspective on life. It has been in command of what she does and who she is.

But that was then.

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oday, Cheryl elects to fight.

Asserting herself as a soldier on the front lines of the battle to cure Huntington’s Disease, Cheryl cares for her youngest daughter that can no longer care for herself. She travels the country speaking, educating, and inspiring. Her fight with HD traces back as many decades as it will likely continue, but she doesn’t let that shake her. She can’t. As a fighter for hope, she is far too valuable to sit back and do nothing. Here’s why.

The Husband

In the spring of 1978, Cheryl was a nursing school student months away from marrying John Sullivan. During her pediatric rotation, a nurse colleague told Cheryl that she had cared for John’s mother, Eileen, before Eileen’s death from Huntington’s.

This confused Cheryl. Eileen had died from rheumatic heart disease when John was 14, and to hear a nurse say different was something Cheryl wrote off as coincidence.

“It couldn’t have been the same person,” Cheryl said. “I just assumed that nurse thought my John Sullivan was a different John Sullivan. We never studied Huntington’s Disease in nursing school, so that night I went to my dorm and found two sentences in a textbook that said it was a hereditary illness. That’s it. But I always kept that in the back of my head. Always.”

Jump cut to 1989. Late one evening, Cheryl received a call from the Lowell Police Department, where John was employed as a police lieutenant. One of John’s colleagues informed Cheryl that something was wrong. He couldn’t put his finger on it, but something about John was off.

Fast forward to two weeks later, John and Cheryl were looking over John’s neurological

exam at Lahey Clinic located just outside Boston. According to Cheryl, John’s exam was normal, but when Cheryl mentioned Huntington’s, everything changed.

“Bringing up HD to John’s doctors set off a host of new ideas,” Cheryl said. “The HD gene had not been discovered yet, so the doctors could only go off his symptoms.

It didn’t take long for John to be diagnosed with HD.” If a parent has Huntington’s Disease, there is a 50 percent chance that their child will inherit the faulty gene. Based on symptoms alone, it is clear that John’s grandmother passed the faulty gene to Eileen, who then passed it to John.

“Once John was diagnosed, we started getting everything in order,” Cheryl said.

“We met with a financial planner and an attorney – John was already showing

hoped they never got Huntington’s,” Cheryl said. “But if they did, then they should do everything they could for as long as they could. ‘Do everything you can as long as you can,’ that’s what he’d say.”

John and Cheryl got divorced in 1993, but remained very good friends. In 1997, Huntington’s forced John to retire. In the period between his diagnosis and retirement, he was promoted to captain, ran and finished nine Boston marathons, and participated in many clinical trials. For all intents and purposes, he followed his own advice and did everything he could, while he could.

In 1998, Cheryl moved John back into their home so she could care for him full time.

In late 2000, he was moved to Tewksbury Hospital, a nearby facility known for its work with HD, where he remained until his death in September 2008.

Cheryl, Meghan and Kaitlin all involved John in their lives as any wife, friend and daughter would. They visited with him – reading and remembering. But during the final years of his life, all three women agreed to keep something from John that they felt would’ve been too cruel to share. It was kinder, they felt, to not make him aware of the fact that his HD gene had been passed on.

The Daughter Young

Meghan began showing symptoms of HD during the summer of 2006, between her freshman and sophomore years of college.

The signals were initially subtle, hinted at by the occasional finger tapping or facial

As a parent, you want to be able to protect your child and make them better if there is something wrong, and I knew there was nothing I could do to protect her.” symptoms at that time, so we knew that we had to start getting everything in place before the HD symptoms progressed too quickly.”

But as Cheryl tells it, she and John were not naïve about the odds they faced. Their oldest daughter, Kaitlin, was eight when John was diagnosed, her younger sister, Meghan, was two. Both had an equal chance of inheriting the Sullivan HD gene.

“John always said to our daughters that he

grimace. She also became clumsier and less focused, often taking up to eight hours a night to finish her homework.

“I was afraid to say anything to her,” Cheryl said. “As a parent, you want to be able to protect your child and make them better if there is something wrong, and I knew there was nothing I could do to protect her.”

The following spring a gene test confirmed what Cheryl and Meghan already

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knew – Meghan Sullivan had Huntington’s Disease. She was 19 years old.

There are currently 35,000 Americans with HD, making Meghan roughly 1 in 3,500 people in the US who have juvenile HD. In 90 percent of juvenile HD cases, the patient has inherited the faulty gene from their father.

“I was very realistic – there was a 50/50 chance that the girls may have the HD gene,” Cheryl said. “But because the onset is typically older, I hoped that by the time Meghan was 30, there would be some medical advancement in treatment or even a cure. So to have her juvenile HD take hold so quickly really came as a shock.”

seen a daughter as happy as Meghan that her mother is doing her hair. But that’s what Meghan has that many people lose sight of: appreciation. She appreciates everything she is able to do and experience.

When I spoke with Meghan, her joy for life was the first thing I took notice of.

takes Meghan back to Lowell Health Care Center, she knows her daughter is in safe hands.

“That center goes above and beyond for Meghan,” Cheryl said. “They do her hair, give her manicures and pedicures – it’s those little, special things that make their care so

A Life in a Day

Cheryl’s home, where she has lived for more than 25 years, is in Chelmsford, Mass., roughly 30 miles northwest of Boston, and less than 10 miles from Lowell Health Care Center, where Meghan lives full time.

Cheryl visits Meghan almost daily, taking her to various special occasions throughout the week, and bringing her home every Sunday. Sundays are their day.

Cheryl dresses Meghan in something nice, does her hair, puts on her makeup, and so on. While Cheryl prepares lunch, Meghan spends time wrestling with Seamus, the rambunctious family dog, or plays around on the computer.

And it is in witnessing this routine that I found myself stuck in some phase of foreign admiration. I don’t think I’ve ever seen someone enjoy playing with a dog as much as Meghan does. I’ve certainly never

2 Sure, she gets frustrated that she has trouble controlling her physical movements and can’t speak the words her brain so clearly wants to communicate, but that’s only something Cheryl told me later. Meghan is kind, complimentary, articulate, and above all, hysterical.

While doing Meghan’s hair, Cheryl began to tell the Sullivan’s history with Huntington’s. It took Cheryl more than 30 minutes to get through the story, and the second she was done, Meghan dryly said, “I don’t like that story,” while letting out a slight self-effacing smile.

And this is pretty much how Cheryl and Meghan’s Sundays go. They go through their routine, talk, play, and when Cheryl

remarkable. I never want her to think that she’ll be alone or not have visitors. I know at one point that was a real concern of hers, but it’ll never be the case. She’ll always have people around her.”

Cheryl is a storyteller. In my brief time with her, she dove into numerous amusing anecdotes, my favorite of which was about a recent benefit concert a Sullivan family friend organized to help raise awareness about HD. When the event concluded, a musician from The Beatles cover band that performed approached Cheryl and Meghan.

“He walked up to Meghan, looked her in the eye and told her that she had changed his life,” Cheryl said. “I don’t know, I guess Meghan just has that effect on people.”

I couldn’t agree more.

The Daughter Old

Kaitlin had planned on getting the HD gene test before she started a family with her husband John, whom she wed in 2006.

According to Cheryl, Kaitlin did not want to perpetuate the faulty gene without first being tested. And after receiving the test in May of 2007, Kaitlin learned that she has the HD gene.

Kaitlin is what is considered gene positive.

She has the HD gene, but is currently not showing any symptoms.

“As a mother, to realize this now affects both my children… that was a really hard pill to swallow,” Cheryl says. “I was really angry for a long time. Just angry at the world. But I knew that wasn’t going to solve anything. So in 2007, I left my job as a registered nurse and began volunteering

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full time for the Huntington’s Disease Society of America.”

Since coming on full time with HDSA, Cheryl travels the country speaking to college students, medical professionals, politicians, and scientists to help spread awareness about HD. “I will speak to whoever will listen,” Cheryl says. “I always like to think that maybe there will be a medical student in the crowd who will become the doctor who finds the cure for HD. Maybe there’s a rich philanthropist in the audience who will donate to the cause. I know that’s not going to cure my girls, but it’s the best thing that I can do to help.

“Because Meghan is my child, and because she is so young, I wish I could trade places with her. I feel like she deserves to have a full and fun life, and I know that she’s not going to have as long of a life as we wish, so my role as caregiver is to be the best advocate for her that I can. Advocate and hope.”

Hope is something Cheryl talks about often. Retaining a certain level of hope is

4 necessary if you want to keep fighting, she says. Hope got her through anger. Hope puts her on stage in front of hundreds of people across America. Hope is a notion she values wholeheartedly, and in November 2008, hope is exactly what she received.

The Granddaughter

Despite learning she had HD, Kaitlin and her husband were determined to have a family, and due to current medical technology, they knew they were able to have

children without passing on the HD gene.

In November 2008, Cheryl’s granddaughter, Teagan, was born void of the Huntington’s Disease gene.

“She’s our miracle baby,” Cheryl said. “She’s brought us so much joy and happiness. John’s mother was an only child, and John had one brother who does not have the HD gene. So that leaves Kaitlin and Meghan. With Teagan, the Sullivan family has broken its HD cycle. The cycle is broken. The cycle is broken.”

1. Cheryl and Meghan at Cheryl’s home in Chelmsford, Mass. 2. From left: Kaitlin Sullivan with her father, John, and younger sister, Meghan. 3. Cheryl and Meghan go through their Sunday routine. 4. Meghan with her niece, Teagan. Photos 1 & 3 by Alex Withrow. Photos 2 & 4 are Sullivan family photos.

The Toll of Caregiving

ommunity Caregiver

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recent AARP study reported that one in every two working adults has cared for an aging loved one in the last five years.

This phenomenon is taking an increasing toll on the workforce. With all of the additional stress and complexities to manage as a working caregiver, this growing community of employees tends to have elevated levels of absenteeism and presenteeism (being at work but not

working effectively), costing employers between $17.1 and $33.6 billion annually and increasing tension among team members.

But the good news is that many companies are taking a stand and helping their employees better manage their livelihoods by introducing resources that include: educational seminars, online management tools, on-site support groups and flexible work schedules.

If a more flexible work schedule seems to be what the doctor orders, here are some tips for talking to your employer:

•

•

•

Focus on productivity.

Acknowledge that this new work schedule is a change, but emphasize the strengths of the plan you are proposing.

End with common understanding.

Make sure you understand exactly what your employer is willing to do by repeating back what you understood.

Summarize the agreements you reached. Ask who will inform the organization about any changes, and get the changes in writing.

For more information on managing caregiving and work, visit: liftcaregiving.com.

B ro u g h t to you by:

The Voice of Reason

by Alex Withrow

Patient Association Profile

H

untington’s Disease (HD) is a hereditary, degenerative brain disorder that slowly affects a patient’s ability to walk, talk, and function, eventually causing them to become completely dependent on others. Presently, there is no cure for HD. Although HD is classified as a rare illness – with roughly 30,000 people in America currently diagnosed – its hidden at risk factors secretly affect more than eight times that. If you’re the child of someone with HD, there’s a 50 percent chance you have the HD gene. It’s in your blood. It carries over, long before you may even realize.

Organizations like the Huntington’s Disease Society of America (HDSA) exist to make people aware of the fact that they may contain a gene that could very well kill them. But they also exist to help. To educate and raise awareness. They act as a voice for the 30,000 people who have lost theirs. HDSA does all of this from their various regional offices, chiefly their headquarters in downtown Manhattan.

But, like most voluntary health agencies, HDSA had a far more humble beginning than its contemporary nationwide reach may indicate.

Soon after famed musician Woody Guthrie died from complications from HD, his widow, Marjorie Guthrie, placed an ad in a New York newspaper, asking readers with HD in their family to contact her and discuss possible solutions for Huntington’s.

The ad led to calls, and the calls led to meetings. The meetings, as it soon turned out, led to something much more.

“Meetings around the Guthrie kitchen table led to Marjorie testifying before Congress to procure funding for research for a cure for Huntington’s, and the informal meetings turned into a formal association, which in 1967 became the Huntington’s Disease Society of America,” said Fred Taubman, Director of Marketing and Communications for HDSA. HDSA, Taubman said, acts as the voice for the families in the HD community. “We

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Summer 2012

work to identify and support services for people with HD,” he said. “For many people [HDSA] is the first source of information and support when [patients] learn about HD, or first get diagnosed,” Taubman said.

But with all of HDSA’s tireless advocating and education, HD is still widely unknown among most people. “[Due to] concerns about insurance and workplace discrimination, there has been a shroud of secrecy around much of the HD community,” Taubman said. “So increasing awareness is a real challenge.”

Taubman said that because HD is the only neurodegenerative disease that has only

HDSA exists to help.

To educate and raise awareness. They act as a voice for the 30,000 people who have lost theirs. one cause – a mutant huntingtin gene – and its DNA relationship to Alzheimer’s, ALS, Parkinson’s and other diseases is so similar, HD is a disease that everyone should know about.

According to HDSA.org, every person who inherits the HD gene will eventually develop the disease. And because children of people with HD are at such a high risk for contracting the disease, HD awareness, Taubman said, needs to be at an all-time high.

Take, for instance, the government’s recent decision to add juvenile HD to the compassionate allowances condition list. A decision, Taubman said, that was reached after years of steadfast dedication.

“Now, someone diagnosed with Juvenile Onset HD will qualify for Social Security immediately,” Taubman said. “For HDSA, it’s a positive outcome of several years of lobbying and pressure through the HD Parity Act, a bill currently in Congress that would change Social Security definitions of Huntington’s and waive the two-year Medicare waiting period. It’s a great step, but we have more to do in this area.”

More includes continued advocacy for adult HD to be listed as a compassionate allowances condition. For that to happen, Taubman said, HDSA will need to stick to their roots, and speak out for those who have verbally fallen silent.

“We hope to increase our activities in all areas: family services, research, advocacy and education,”Taubman said. “Through this, we will certainly help build greater awareness of HD. Hopefully the successful movement of some of the therapeutics moving their way through the drug development pipeline will yield new therapies for people with HD, which will also increase awareness of the disease within and outside of the HD Community.”

CONTACT HDSA HDSA.ORG 1-800-345-HDSA

NEWSMAKER

Interview by Alex Withrow DR. SANDRA KOSTYK has been a movement disorders specialist for more than 12 years, specializing in Huntington’s Disease (HD) and other neurodegenerative disorders including Parkinson’s disease. Caring Voice Community spoke with her about the importance of genetic testing, the role of a caregiver, and the positives and negatives of getting tested for HD.

Dr. Sandra Kostyk MD, PhD Director, Movement Disorders Division Ohio State University

Autosomal Dominant Inheritance Father Mother

Normal

Affected

Each child inherits a normal copy of the gene from Father, and either a normal or defective copy from Mother Possible Combinations:

Normal Affected

Normal Affected

Autosomal (non-sex) chromosome with normal copy of gene Autosomal chromosome with defective copy of gene

How important is genetic testing for Huntington’s Disease?

Finding the HD gene in 1993 was a big breakthrough for this disease because you can confirm that someone really has this disease, not just that you think they have it. To stress how important this is, I can compare it to Parkinson’s disease. One of the problems with research in Parkinson’s is that there are 11 or 12 or more genes that are associated with Parkinson’s, there are also environmental factors so there may be many different forms and causes of Parkinson’s. You cannot differentiate between the types of PD or make a definitive diagnosis via blood tests – all that makes doing research on Parkinson’s harder than on Huntington’s, a disease where you have one gene that causes the disease.

And of course being able to make a definitive diagnosis helps with deciding on treatment and understanding the disease prognosis.

How early do you recommend a person get tested for HD if the disease is in their family?

My answer to that question is: when they are ready to get tested. We don’t recommend that everyone get tested at one particular time, the decision to get tested is a very personal one, and it varies from individual to individual. We recommend that before anyone gets tested, they meet with a genetics counselor, a neurologist, a social worker, and often times, a psychologist.

One needs to completely understand the pros and cons of getting tested, and those vary for each individual.

In general, both in Europe and in the United States, we do not recommend testing before ages 18-21. And there is a lot of

debate on whether people should get tested before they’re symptomatic. People need to know the benefits of getting tested and the disadvantages of getting tested.

Only 5 to 10 percent of people who live in the United States and who have HD in their family choose to be tested before they have symptoms. So why do 90 percent of those people elect to not be tested? Why do you want to know if you have this disease? There’s no cure, so why do you want to know? What’s the advantage of knowing? Will you lose health insurance if you test positive? Can you get health insurance if you test positive? Will it affect your relationships? How will it affect other aspects of your life? Are you prepared for the consequence of a negative result as well as of a positive result? I don’t mean to be flip about this, but the point I’m getting at is: are you really ready to be tested? I want people to know about the reasons to get tested and the reasons to not get tested.

What is your advice for someone who has been tested and shows that they have the HD gene? How are they instructed to deal with the “waiting game” before HD symptoms start to appear?

Live life to the fullest. Eat right, live right, play right, exercise, love. Once you find out that you have the gene, it isn’t really a “game.”

I like people to be proactive. HD is an orphan disease, so there are not a lot of people with it. We have a lot of clinical trials going on.

We have more trials and studies going on than there are people who qualify for those trials. So I would suggest that people consider participating in pre-symptomatic trials. That way they can contribute to the progress we are making, so that by the time they begin to show symptoms, maybe we will have better treatments for the disease. This is a slowly progressive disorder that may last for 20 or 25 years or more after symptom onset.

It’s also very important for people to have hope. There have been a lot of advancements in the past 10 years in our understanding of Huntington’s Disease. We’re making progress. We have several studies going on in this country suggesting that certain agents may slow down the rate of progression with this disease. And if we can do that, it won’t be so much waiting for the disease, as it will be an active process to slow and delay the Continued on pg. 15

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A

wise man once said that health insurance is the most important investment a person will ever make. Think about that statement for a moment. We can’t function in life if we are unable to maintain our health. Unfortunately, many people lose coverage as a result of life’s circumstances.

It is this population of people that find it most difficult to make that all-important investment that ensures a healthier tomorrow.

So what options exist for individuals who have lost their health insurance? The answer to that question is not a simple one because it depends on each situation.

There are many factors that determine what options may exist. Are you protected under HIPAA law? Was your coverage considered Creditable? Are you eligible for COBRA

coverage? Are you eligible for governmentsponsored health insurance? So many questions that can be confusing and quite honestly, complicated.

Let’s take a brief look at some of these options. COBRA, Consolidated Omnibus Budget Reconciliation Act, gives workers and their families who lose their health benefits the right to choose to continue group health benefits for limited periods of time. There are many rules associated with COBRA and time limits for electing coverage. Medicare is a governmentsponsored program that may be available if an individual is age 65 or has been declared disabled for a period of 29 months. In addition, there are Medicaid programs, which are run by each state and offer comprehensive coverage to certain individuals with limited income. The Pre-Existing Condition Insurance Plan, also known as PCIP, is a new program

offered in every state under the Affordable Care Act. You may qualify for this new health coverage option if you have been uninsured for at least six months, you have a pre-existing condition, and you have been denied coverage. Finally, there are High Risk Pools which are available in select states and eligibility varies. To learn more about HIPAA law and creditable coverage, you should visit www.dol.gov.

In an ideal world, there would be a simple solution but securing affordable, comprehensive coverage is like walking through an unfamiliar maze. The good news is that every maze, regardless of its dead ends, does have an exit. A great place to start your journey to locating coverage is www.Healthcare.gov. This website is easy to navigate and allows you to enter information specific to your situation. After answering a few questions, it directs you to all of the options that may be available in your state. It provides simple definitions and the opportunity for you to view the details of each option. For those who may not have access to a computer, I suggest you contact an organization, like the Jackson Caring Voice Coalition, where advocates assist eligible individuals with their search.

It would take a book to explain all of your options, which is why you should reach out for support. If you are already dealing with a chronic condition, venturing through this maze is not something you want to do alone.

There are people who care about you and want to ensure that your health insurance investment is the right one.

Making the Right Investment

By Amy

Source: United States Census Bureau

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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.

SSA Adds Juvenile HD as a Compassionate Allowance In April, the Social Security Administrations announced that it was adding Juvenile Onset Huntington’s Disease ( JHD) as a Compassionate Allowance (CAL) condition. According to the Huntington’s Disease Society of America, this decision means that an individual diagnosed with JHD can now get their disability application approved much more quickly.

For more information, visit hdsa.org.

Continued from page 13 onset of this disease while we make further advances towards finding a cure. There are many things a person in this situation can do to be proactive and maintain a good life.

How important is the role of caregiver when dealing with HD?

It is extremely important. In general, the bigger the support network a person has,

the better they are able to cope with any of the things that life throws at them.

The caregiver can help in making the disease process easier. But this disease can also be quite a burden on the caregiver, especially in the later stages of the disease so it is important to focus on the needs of the caregiver as well. Caregiving is not something that comes naturally to some people, and all caregivers need support, too.

Keeping lives on course.

Bank of America Merrill Lynch is proud to support Caring Voice Coalition. We salute the many caring individuals and organizations who are teaming up to support those in need.

“Bank of America Merrill Lynch” is the marketing name for the global banking and global markets businesses of Bank of America Corporation.

Lending, derivatives, and other commercial banking activities are performed globally by banking affiliates of Bank of America Corporation, including Bank of America, N.A., member FDIC. Securities, strategic advisory, and other investment banking activities are performed globally by investment banking affiliates of Bank of America Corporation (”Investment Banking Affiliates”), including, in the United States, Merrill Lynch, Pierce, Fenner & Smith Incorporated and Merrill Lynch Professional Clearing Corp., both of which are registered broker-dealers and members of FINRA and SIPC, and, in other jurisdictions, by locally registered entities. Investment products offered by Investment Banking Affiliates: Are Not FDIC Insured • May Lose Value • Are Not Bank Guaranteed. ©2012 Bank of America Corporation ARW3H1W1 | BB-137-AD

It’s important for caregivers to realize that they can’t do everything themselves. It’s a community disease. People need support.

HD is an orphan disease, does the lack of awareness about the disease present any challenges with diagnoses/prescribing medications/insurance coverage?

In families where there is no known history of the disease, if someone starts to show symptoms of HD, that may not be the first thing that comes to a health care provider’s mind. So symptoms might be diagnosed initially as being related to another disorder.

This isn’t usually a major problem, because as the disease progresses, it usually becomes clear that it is in fact HD. But sometimes, people may initially be diagnosed with bipolar disorder or schizophrenia or other neurological disorders. Fortunately, a delay in diagnosis does not necessarily mean a delay in treatment as early symptoms of HD are generally treated similar to the symptoms of other disorders. At this point HD treatment is based more on symptoms than on diagnosis. Of course, having the correct diagnosis makes a difference in the long term and the more we can promote awareness about HD the better.

Insurance can be an issue, depending, in part, on what kind of medical coverage a person has. One of the big problems we have with HD is disability coverage, because once someone is declared disabled and unable to work because of HD, they may not be able to get financial coverage and assistance for two years or more. HD tends to strike in the prime of life, in the middle of an individual’s most productive years. We do need to make people aware that this is a progressive disease that gets worse over time and is quite devastating.

Two years can make a huge difference in quality of life for a person and their family.

The more information and understanding the medical and general community has about a disorder like HD, the easier it is for affected individuals, their families and communities to cope with the social, financial and medical aspects of the disease.

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In Sickness and In Health

By Julie Flygare

A story of Narcolepsy, from the deepest valley to the highest mountaintop

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y certain standards, I am a sick person, diagnosed with a serious case of Narcolepsy with cataplexy. By other standards, I am extremely healthy, taking on “one of the most grueling road races in the world.� My experience suggests that perhaps sickness and health are not necessarily opposite ends of the spectrum, as I stand somewhere in the middle.

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WHATis...

Narcolepsy

An autoimmune neurological sleep disorder affecting 1 in 2,000 people

Cataplexy (symptom)

Sudden weakness of the muscles of the body, especially the legs that is often brought on by strong emotion

f

acts:

Narcolepsy most often presents itself in childhood, adolescence or young adulthood, and lasts a lifetime Cataplexy is the most specific symptom of Narcolepsy One does not have to have cataplexy in order to have Narcolepsy Roughly one-third of Narcolepsy patients do not develop cataplexy

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ive years ago, my neurologist’s eyes sparkled with excitement when he diagnosed me with Narcolepsy.

My 24-hour sleep study indicated a classic case of Narcolepsy with cataplexy. “You spent all five naps in REM dream sleep!” my doctor exclaimed.

For me, this news was less thrilling. At age 24 and in my second year at Boston College Law School, I wanted to be a skilled lawyer, not a skilled sleeper and dreamer.

Adjusting to Narcolepsy in law school was difficult. I experienced the symptoms of Narcolepsy at school. I hid in the library basement to nap; I cried alone in the bathroom after traumatizing episodes of hypnagogic hallucinations and sleep paralysis. I avoided social spaces when I might have cataplexy (muscle weakness with emotion).

After 19 years as an “athlete,” including playing Division I varsity sports at Brown University, I quit exercising cold turkey.

There were so many demands on my time and energy, I simply couldn’t do it all.

A few months after my diagnosis, I reached a low point; realizing narcolepsy was the worst thing that had ever happened to me.

“

I tried various medications hoping to find a good balance between effectiveness and side effects. I rediscovered wakefulness by accident. I was reading in the library one night after a few months on my Narcolepsy medication. I looked up at the clock – it was past nine o’clock at night. Usually by this hour, I would have already thrashed in and out of sleep a few times.

All at once it hit me, I felt nothing in my head – no heaviness pushing down on my skull, no clogged connections in my brain, and no burning behind my eyes. The feeling of nothing would usually go undetected, but it was so foreign to me. I began to sense how bad things had gotten before I’d gotten treatment.

Amid the stoic silence of the law library, tears streamed down my face and fell into the crease of my textbook. I didn’t bother to hide my face or wipe my text. Instead, I sat still in awe of the strange self-discovery. The gap between wakefulness and sleepiness was much wider than I’d thought.

I’d like to say the rest of law school was a breeze, but that’d be a lie. I’m proud to report that I stayed in school and graduated on time with my classmates in 2009. After law school, I returned to athletics to run the Boston Marathon to raise funds for Narcolepsy research. I wasn’t sure I would be capable of running 26.2 miles (with or without Narcolepsy). My parents were extremely concerned.

Oddly, it’s not despite of my illness, but because of it, that I push myself harder than ever...”

More than 200,000 Americans and 3 million people worldwide have Narcolepsy

Coutesy of WakeUpNarcolepsy.org and SleepFoundation.org

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Read more on Julie’s blog at www.JulieFlygare.com

What if I experienced cataplexy while running alone and injured myself ? Would my sleepiness get worse? Life with narcolepsy was hard enough, why make it harder on myself ? I got a medical bracelet for safety. I found that my training didn’t really affect my Narcolepsy but that I felt stronger and happier generally.

Now, I am training for one of the world’s most challenging road races, the Mount Washington Road Race, which is 7.6 miles while climbing more than 4,700 feet. This is the equivalent of climbing the Empire State Building four times in a row.

Oddly, it’s not despite my illness, but because of it, that I push myself harder than ever with narcolepsy.

At first, I only saw what Narcolepsy took away from me. I was angry and grieved for the “stronger” person I’d been before. Then, something shifted. I realized that “health” was not a guaranteed full-package ride. Narcolepsy woke me up to my life.

I experience discomfort daily. These moments remind me that my healthier moments are not to be taken for granted. Being awake, standing, walking and running are precious gifts.

A few days ago, I woke up from a nap unable to move my body (an episode of sleep paralysis).

No matter how much I “told” my arms and legs to move – my body lay dead as a corpse. I was trapped, a prisoner in my body, uncertain if I would regain control. It was maddening and claustrophobic – all I could do was lay there, scared to the bone.

Eventually, the spell was broken and my body and mind reconnected as one seamless object. I wiggled my fingers and toes. I lifted my arms up and scurried out of bed.

A few hours later, I arrived at the gym for one of my hard training workouts. I was lethargic and I didn’t feel like pushing myself to the edge as I knew I had to in this workout.

Yet, momentum moved me forward onto the treadmill. I walked for a few minutes before picking up the pace and increasing the incline to 11 percent (the average incline of Mount Washington). I faced my edge – waves of nausea washed over me, sweat poured from my body – soaking my clothes and the treadmill.

Yet, as I trampled along, the feeling of laying immobile in bed flashed in my mind.

This reminded me that it was an honor and privilege to put one foot in front of the other on the treadmill. So, I ran in awe of the extremes

of my existence – from full-body paralysis to powerful, graceful strength. To have legs, and to watch them catching each stride was enough.

I couldn’t help but laugh to myself. To all the other gym goers, I was just another average runner. I knew better.

In 2010, I finished the Boston Marathon in 4 hours and 41 minutes. This June, I take on an even greater challenge. Mount Washington still feels insurmountable, despite my diligent training – I am humbled by one of the world’s most grueling races. I do not know if I will make it to the summit, but it’s an honor to be in the race.

If I do make it to the top, it will surely be the proudest moment of my life. So they say, only those that have been in the deepest valley know how magnificent it is to reach the highest mountaintop.

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Julie Flygare, JD is a writer, runner, yogini and health communications specialist. She received her BA from Brown University and her JD from Boston College Law School. In 2011, she established the first SLEEP WALK to celebrate National Sleep Awareness Week.

Most recently, Julie finished writing a memoir about her experience with narcolepsy. Her story has been featured by national media sources including NBC Universal, ABC News, Sirius XM Radio, the Boston Globe, and Marie Claire Magazine.

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On Saturday June 16, four days before this issue went to press, Julie completed the Mount Washington Road Race, where this picture was taken.

“It was brutal and beautiful,” Julie said.

“That Saturday was the best day of my life.”

1. Julie upon finishing the Boston Marathon. 2-5. Training for the Mount Washington Road Race. 6. Competing in the Boston Marathon. 7. Julie Flygare, photo by Matt Spaulding. 8. Participating in SLEEP WALK 2011 at the National Wall in Washington D.C. Photos 2-5, taken by Chris Weldon.

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Why Patients Resent Their Medication

By Tim Robertson RPh

The psychology behind medication compliance adherence

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hat I referred to as a “compliance” opportunity in the last issue of Caring Voice Community is described

by Alignmap.com as a “healthcare catastrophe.” So vital to our health care system recovery that the National Consumers League has created a public awareness campaign titled Script Your Future (scriptyourfuture.org) to help underscore the importance of taking medications as directed. The fact that, according to ScriptYourFuture.org, 125,000 Americans die every year as a result of not taking their medications is worthy of attention and we, as an organization, want to be part of the solution.

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o why would anyone resent their medication? This concept was brought up at a conference recently and it got me thinking more about the psychology of chronic disease and reasons why some patients may not take their medications as prescribed. The thought is that many patients, for good reason, may resent the fact that they have a disease to which there is no cure. Often times, the one thing reminding them that they have this condition is the medication they take. They resent this reminder, and even though it is saving their life, they miss doses on a regular

basis. Certainly, this is not how every patient with a chronic disease thinks, but for the great majority of patients, this thought has crossed their mind at least once or twice, and may even be an ongoing struggle.

Compliance or Adherence?

These two words may seem interchangeable to most but there is actually a little psychology behind the difference.

Dictionary.com defines comply as: to act or be in accordance with wishes, requests, demands, requirements, conditions, etc.

Until recently, compliance was always how

Are You Social?

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By Alex Withrow

The

we described it when patients did not take their medication. Even though the medication prescribed may be for their benefit, having no say in the choice of medication may make patients feel they have no stake in the game and therefore, do not give their best effort.

Adherence, on the other hand, is defined by the same source as: to be devoted in support or allegiance. This definition gives the feeling that the patient is committed to the treatment plan that they helped to create. They have been a part of the process and therefore feel empowered to take

FACTS

ften accompanied with a rare disease is an overbearing sense of isolation. Our patients are often left thinking that they are alone in their fight. But as many of our active patients will attest, social networking can help curb your solitude. By logging on to our Facebook and Twitter sites, you can interact with others who have your disease. On our Vimeo site, you may find solace in one of our patient’s stories. There are others out there like you, and we’re here to bring you together.

on

Adherence

On our Facebook timeline, you can participate in discussions, share your story, and much more.

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http://www.facebook.com/CaringVoiceCoalition

Visit epill.com for a cataloged list of products that help you remember when it’s time to take your medication.

of hospitalizations are attributed to poor ADHERENCE

Source: National Council on Patient Information and Education. 2007

their medication to maintain their health.

There really is little difference in the actual words used here, but the concept that each of them represents is huge. The bottom line is, making sure the patient is part of the process in developing their treatment plan. This, along with support, will go a long way toward improving our adherence opportunity.

Social Capital

Have you heard the phrase “there is power in numbers”? I truly believe that this applies to patients and the success that they have in managing their medications and their disease. There has been a great deal of research done on the topic of social capital, which basically means that there is value in social networks. This has been demonstrated in many chronic disease communities who hold regular support group meetings.

Patients who participate in support group meetings generally tend to not feel alone with their disease and are usually more

willing to talk about their challenges and how to overcome them. As an organization, Caring Voice Coalition is very fortunate to be able to attend many support groups across the country and have witnessed this effect first hand. As great as this form of social capital is, support groups are plagued by the challenge of time commitments and geographic limitations.

What about social media? The amount of interaction that most people have on social media sites such as Facebook and Twitter continually amazes me. This form of communication has definitely taken over e-mail as the primary means by which people keep up with each other. Social media outlets are a great way for patients who are in similar situations to help gain support in their quest to adhere to their treatment plan. Coincidentally (or not) Caring Voice Coalition is very social, not only in person but also online. If you have not been to our website or our Facebook page, please do so and join the conversation. As a company

we understand the value of connecting with the patients that we serve as a way to make sure that needs are met. This should include having patients help each other with struggles that they’re having. We are committed to being there for you in this fight and to being social!

Tim Robertson has been a pharmacist for nearly 20 years, practicing primarily in the retail setting. He has been employed with CVC since April 2011 where he currently acts as Senior Director of Patient Services.

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recent survey by the National Community Pharmacists Association (NCPA) reported that nearly three out of every four American consumers do not consistently take their prescription medicine as directed.

Other statistics from the survey include: Nearly 50 percent of those polled said they had forgotten to take a prescribed medicine at some point in their lives Nearly one-third had not filled a prescription they were given Almost 30 percent had stopped taking a medicine before their supply ran out

Twitter is a great, simple way to stay in touch, and to also track the latest health news.

Our Vimeo site currently hosts dozens of patient and caregiver stories.

http://twitter.com/cvcinc

http://vimeo.com/thecaringvoice

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BREAKING DOWN SOCIAL SECURITY DISABILITY Part 2: Wellness Journal

Miranda James is the Insurance Education and Counseling Attorney for Caring Voice Coalition. She works with CVC to develop and manage the Disability Assistance Program within the IEC Department.

K

eeping a wellness journal is an important step to being a proactive participant in your own health care, and will be a vital source if or when the time comes to apply for disability benefits from Social Security.

Individuals with chronic illnesses are often challenged by experiencing multiple symptoms for various conditions and are evaluated and treated by a variety of physicians. It is virtually impossible to remember each medical event and onset date while trying to keep your illness under control. Keeping a log of your health history is a great way to monitor health treatments and also have the information readily available should you wish to discuss details with your different physicians.

Journals are just as important, if not more, as written communication with your doctors. Such a written record is proof of how you feel for your doctor and Social Security. If you write out a list of questions and concerns, record how you feel on a daily/weekly basis and discuss it with your doctor during a visit, he is obliged to make it a permanent part of your medical record.

This will provide Social Security with evidence to help decide favorably on your claim.

The journal can contain anything relevant to your health such as medical conditions, a list of medications, activities that make you feel good/bad, physicians and visits. Also, you can ask for your doctor to provide a

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copy of every test or clinical note to include in your journal. The application process requires you to provide detailed information about your illness such as onset dates, symptoms, treating physicians, clinical notes and diagnostic testing. Having a record of your health history will make the process of applying for disability much less daunting and much more manageable.

by Miranda James

screenings you may be undergoing and date of next appointment. Include your doctor’s contact information.

• Have a section for how you are feeling. It is helpful to record how you feel on both good days and bad days. This will be invaluable for visits with your doctors as it will enable you to provide a full detailed report of your health and allow your doctor

When battling a chronic illness TIME can make all the difference in the world.

There are several methods that you can use to maintain your wellness journal. There is no right or wrong way, as long as essential information is recorded.

The following steps will help you set up your journal: • Begin by recording personal information such as weight, current prescribed medication and their purpose, and current diagnoses and onset date.

• Record any information related to your doctor and any specialists you may be seeing and reasons for visits, any tests/

to better care for your needs. Additionally, documenting this information will make completing your disability application smoother.

Maintaining a journal will allow you to recall your health history and important information with ease and enable you to present a strong, comprehensive application; thus improving your chances of receiving not only a favorable decision but also a quicker decision. When battling a chronic illness time can make all the difference in the world.

Next Quarter:

The Appeals Process

Visit caringvoice.org to download Caring Voice Coalition’s free guide to understanding your disability as defined by the Social Security Act

by

Alex Withrow

Q&A with Rich Sagall, President of NeedyMeds The mission is all in the name. When you are in need of your medication (no matter what medication it is, or what kind of insurance you have) Rich Sagall and his company, NeedyMeds, make it their goal to help you get what you need. And for cheap. Here’s how.

What is NeedyMeds?

NeedyMeds is a national non-profit, and our mission is to provide information on programs that help people who are unable to afford medications and health care costs.

We have information on roughly 5,000 programs, and 10,000 free, low cost, sliding scale clinics. This information is free, easy to access from our website, and everything is anonymous.

How did NeedyMeds come to be?

In 1996, I was in family and occupational medicine in Bangor, Maine and I was talking to Libby Overly, a medical social worker friend of mine from Mississippi, who was telling me about patient assistance programs. I thought I was pretty socially aware on these kinds of things, but because I had never heard of patient assistance programs, I was interested. I had just learned how to design and code webpages, and I thought this would be a good project.

When did you take on NeedyMeds full time?

Over time, NeedyMeds grew, and Libby and I would work on it during evenings and weekends. I moved to Philadelphia in 1997 and continued to work on NeedyMeds part time. In 2004, we become a 501(c)(3) non-profit, and we were able to get funding.

So then, I invested half of my time in NeedyMeds and half of my time practicing medicine. And over the next few years, my time at the practice decreased, and by 2006 I was doing NeedyMeds full time. It was a migration over time.

How many people has NeedyMeds helped?

Honestly, I have no way of knowing the exact number. Everyone who comes to our website is anonymous; our drug discount cards are not individualized, so if you have a card, we would not know what you, specifically, were using it for. I can tell you that we get 15,000-17,000 unique visitors on the website most work days, and our drug discount cards are used anywhere from 1,800-2,000 times most business days.

And uses of the cards are only increasing.

Recently, we’ve been saving people over $1 million a month with the card.

Do most people using NeedyMeds already have health insurance?

The vast majority of people who use NeedyMeds are uninsured or underinsured. People with insurance can use the information on our website if their insurance doesn’t cover the drug, or maybe if they have a high deductible, or a low cap. Sometimes our drug discount cards will give a better discount than the copay. Not often, but sometimes. There’s also potential for NeedyMeds to help out with over-the-counter medications written as a prescription, and pet prescription drugs you purchase at a pharmacy. We want everyone to have a card, because the potential savings are so great.

If someone goes on your website and signs up for a discount card, how long before they receive it?

There are three ways you can get the

discount card, 1.) You can download it from the website and have it right away. 2.) Send us a self-addressed stamped envelope and we’ll be happy to send you as many cards as you want for free. 3.) If you’d like to donate some money, you can do that through our PayPal account and we’ll send you a card right away. We’re not out to make money by selling the cards, we want to give them to everyone.

How will the new health care bill affect NeedyMeds?

It will affect NeedyMeds based upon how the patient assistance programs change.

When Medicare Part D came into existence, there were changes. Some of the programs went away but most became a little more complex. My guess is that the same thing will happen if this new bill gets passed: a few programs will go away and a few will become a little more restrictive, depending on what insurance people have.

Any future plans for NeedyMeds?

What we try to do is find an area where help is available that people may not know about, and there is no comprehensive, easyto-access list. That’s when we like to get involved. We want to get the information out to people, we don’t have our own program, that’s important to remember. We are an information source, and we consider what we do as a cooperative effort with everyone who comes to the website. We depend upon our users to help keep our data current. It’s a cooperative effort among everyone who is out there with the same mission, which is to help people.

To access NeedyMeds, visit needymeds.org.

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CONTENTS

One of the most difficult parts of taking a vacation is cooking up the nerve to actually take it. Here’s our guide as to why there’s no better time to travel than right now.

THE ALL-INCLUSIVE PG. 25 THE IMPORTANCE PG. 26 THE HOT SPOTS PG. 28

The Pros and Cons of an All-Inclusive Vacation

by Alex Withrow

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he best part is that once you’re there, you’re there. Whether it’s Cozumel, Cancun, or Costa Rica, once you arrive at whatever exotic landscape you chose, you can plop down in a beach chair and sit there for the remainder of your vacation, if you feel so inclined. Food, drinks, towels, massages – everything you need (or more importantly, want) will literally be brought directly to you. Everything is already paid for, so sit back, indulge, and try your best to not think about your flight home.

That’s the best of it. But all-inclusive deals aren’t all sunshine and umbrella drinks. There are cons when it comes to touching down in a place in which everything is seemingly taken care of. I wouldn’t call them cons so much as cultural differences, but nevertheless, they can be rather jarring. At any rate, let’s examine the good, the bad, and the worthiness of the all-inclusive vacation.

PROS

Like I said, once you settle down and arrive at an all-inclusive resort, everything is taken care of. Unlike a cruise, you can eat and drink as much as you want without the looming threat of being issued a huge bill as you check out.

All-inclusive resorts make it their mission to keep you happy when you’re there. If you plan on staying inside the resort for the entirety of your vacation, it’s their job to make sure you don’t get bored. Keeping you satisfied while you’re there is their way of getting you to come back.

There’s always something to do. There’s always some new activity to take part in, some drink of the day to explore, some new restaurant to dine in. These places are all about offering you variety. Having the chance to do it all, do nothing, or a mix of both is extremely fulfilling.

If you do decide to leave the resort, the possibilities are endless. You can zip line through the forest, jump off 50-foot waterfalls, caravan through the jungle – anything.

The tours are sponsored by your resort, so safety need not be a concern.

The author jumping off a waterfall in the Dominican Republic, 2010

CONS

Once you’re there, everything’s fine. Getting there, however, can be the tough part.

After you’ve landed, cleared customs and exited the airport, prepare to be bombarded by kind, well-dressed men offering you any number of things, most likely to carry your bags for you. Ignore them. Keep walking. If you do let them carry your bags, then prepare to give them a tip. Advice: secure transportation through your resort and have them pick you up at the airport. Do that and they’ll be waiting for you when you exit the airport.

While the food is already paid for at the resort, there’s no guarantee that you’ll like it. I’ve vacationed at several all-inclusive getaways, and I’ve never once had a problem with the food that is served. It is entirely dependent on your standards. Point is, you’re stuck with it.

Same goes for the drinks. They mix them weak.

Money. Of the places I’ve been too, some only take their country’s currency, others only take U.S. dollars, most take both. My recommendation: spilt your money 50/50 before you arrive at the airport.

The exchange rate offered at your hotel (or airport) will be criminal.

IS IT WORTH IT?

the nto 11 i g in flow ean, 20 l o o A p cun oc Can

For me, all-inclusive vacations are the way to go. I’ve been on enough of them to understand and accept the cons above, and if you’re willing to do that, then everything will be fine.

I never know if I’m going to want to explore or simply rest when I arrive at an all-inclusive resort. But I suppose that doesn’t really matter. What matters is that you’re there. You made it.

Now sit back. Relax. Indulge.

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The World Over How taking a vacation correlates with your overall well being

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eep in my soul is a constant need to travel. I’ve never really looked at why this yearning is so great until I was asked to write this article. What I have come to realize is that travel enables me to get away from cooking, cleaning, laundry and all the daily stresses of life. I get to leave my responsibilities behind for a short period of time and focus on me. The change is as good as rest, and upon returning, I am reenergized, my spirit is renewed and I better manage my responsibilities.

Any kind of trip that provides a break from the norm is truly therapeutic for the mind and body. It is a surefire way to keep one’s sanity. And through some creativity and the internet, it can be done without having to spend a fortune. I’ve traveled on the skimpiest of budgets to the “I don’t care what it costs” budget. So as you read this article, take the “I can’t afford it” mindset off the table. And while you are taking the money off the table, take any disability off the table as well, because “if there is a will, there is a way”. This article is to help motivate the “will.”

Traveling is an important part of life and necessary to survival

Taking a break from the daily routine relieves stress simply by providing a change of scenery. The excitement of getting ready for a trip can be a euphoric experience and the anticipation will take the mind off daily problems that often seem larger than life.

Getting away from the daily experiences helps put life in crystal clear terms and allows you to redefine what is truly important.

Breaking away from the burdens and monotony of day-to-day life allows for

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relaxation, better sleep, and a re-evaluation and appreciation for life. Even a brief vacation can cause a noticeable drop in stress levels and increased positivity.

So let’s get planning

Planning is part of the fun and excitement.

The research and planning itself transports the mind to the various locations and the feeling that one hopes to achieve by being there. Just try to think about a vacation on the beach and not say, “ahhhh, I can hear the waves crashing already”. Whether a travel agent is used or the trip is self-planned (that’s my favorite) researching the many activities and locations becomes exhilarating and the anticipation is mood altering. Start the planning by selecting a travel date and budget. From there, enjoy the ride and plan it well.

I started planning a three-week February trip to Australia in August of the previous year. The anticipation created such an excitement that extended through the months of planning. Of course the leadtime was necessary for flights, reservations and logistics (I use oxygen on flights). But some trips are more fun with less planning - I left on a three week RV trip two days after my son requested me to visit. That trip was planned on the go. Each of the trips unfolded with surprises, stories and wonderful memories.

Trips don’t always go as planned so some of the best fun is being flexible and willing to change as situations may arise. Actually those usually are the best memories and the funniest stories. Boy do I have a million of them!

Traveling keeps the mind and body young and fueled by new energy

Once on your trip, it won’t be long before new perspectives are gained. Traveling opens up a whole new appreciation for different

cultures and lifestyles, engaging the mind and broadening horizons. Being immersed in a new locale helps put life in perspective.

The new setting will provide anonymity, lack of responsibility and a sense of freedom to fully relax and enjoy. No matter whether it’s laying on the beach, walking the streets of a historic city, or riding a subway, a trip is sure to be mentally and physically active. The television is off, the computer is shut down and the outdoors abound. Experiencing the destination and all it has to offer provides the motivation to be more active.

Reconnect with a partner

Travel gives a wonderful opportunity to spend quality time with a partner without the intrusion of day-to-day responsibilities. It offers restorative qualities and an unencumbered space for open communication. Relaxing in a hot tub together sure beats fighting about whose turn it is to clean the bathroom.

Tulum Mayan Ruins

Memories that last a lifetime

The delectable eateries, one-of-a-kind shopping, renowned museums, unique architecture, pristine beaches, and rugged mountain tops will combine to create a lifetime experience that will be discussed for years to come. The photos will capture the settings in time, but even more, the memories, stories, smells, sights and sounds will stay embedded in the mind forever.

The benefits of travel are vital for your mental, physical, and spiritual health. You deserve to get away; you must get away!

Throw caution to the wind, contact your travel agent, research the internet and pack your bags. A beautiful city, exotic beach, rain forest, or snow-capped mountain awaits you. I guarantee your mind and body will thank you for it!

Cabo

San L ucas

Sedona,

AZ

Terri’s Travel Destinations

H

t

Sp

For the Indulger

ts

Because it’s about time you took that vacation

More than just a home base for several of the best wineries in the country, Napa Valley contains picturesque views for miles, superb dining, and affordable lodging to help maximize your comfort

Napa Valley

According to NapaValley.com, many of the region’s spas, resorts, winery tours are handicapped accessible.

For more information, visit NapaValley.com

For the Thrill Seeker

Las Vegas, NV

Sure, there’s the gambling and buffets and free drinks and bright lights, but did you know that Las Vegas is one of the most handicapped accessible cities in the country?

According to disaboom.com, some of the top attractions for disabled people to visit in Vegas include the Grand Canal Shoppes at the Venetian, the volcano eruption at the Mirage, as well as the various concerts and live shows.

For the Explorer

Photo by Flagstaff CVB

Grand Canyon

Whether you’re hiking, climbing, looking out, or touring in a helicopter, you’ll be surrounded by natural beauty.

Handicapped visitors may contact the National Park Services to request specific assistance ahead of time.

Visit nps.gov/grca for more information

For the Relaxer If you have it in you to make the trek, Maui will in no way disappoint. The city is modeled on relaxation. It is comfort, personified.

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Mobility-Advisory.com says that helicopter rides, whale watching, scenic tours and even scuba diving are common Maui activities for disabled visitors. Photo by Hawaii Tourism Authority (HTA) / Tor Johnson

W

hether you enjoy soaking up the sun or taking in centuries worth of history, here are a few vacation spots that will accommodate people with a chronic illnesses and their loved ones both equally.

For the History Buff

Washington, D.C.

The monuments, the museums, the culture, the history - everyone should visit our nation’s capital at least once in their lives. What’s stopping you now?

Take your time looking at all of the historic landmarks on the National Mall, and walk up nearby Constitution Ave, for easy access to some of the country’s most famous museums.

Photo by Capital Region USA

For the Adventurer If you’re an oxygen user looking to take a vacation void of any hassle, then a Sea Puffers cruise will suit you perfectly. Their friendly, dedicated staff puts oxygen users’ worries at ease as you travel around the world.

Sea Puffers

To plan your hassle-free vacation, contact Sea Puffers 866-673-3019.

For the Beach Bum

Key West, FL

Photo by VISIT FLORIDA

The sun, the sand, the water, Margaritaville what better place to soak up the sun than in Florida’s famed Key West?

Fla-Key.com/accessibility lists dozens of fun activites for people with mobility disabilities including museum tours, aquatic center visits, as well as various notable restaurants and artistic cultural experiences.

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by Suzanne Flood Marketing & Communications Manager, PHA

PHA on the Road: Bringing PH Education to You in 2012

I

f you’re looking to expand your knowledge of Pulmonary Hypertension then you’re in luck! The Pulmonary Hypertension Association is heading to two new cities this year with our PHA on the Road: PH Patients and Families Education Forum program.

PHA on the Road is a free full-day regional education forum that aims to provide patients and families with opportunities to further their PH education and network with other PH community members in their area.

In fall of 2012, PHA on the Road will be stopping in New Brunswick, N.J. on September 8 and the Chicago area on October 13 to provide PH education and to help raise awareness. PHA will bring together experienced PH medical experts from local area institutions to present on a variety of PH-related topics. The forums will feature interactive presentations, general sessions and exhibits regarding the symptoms, diagnosis and treatment of Pulmonary Hypertension. Session presenters will also cover the practical challenges of living with PH, coping with the disease, and lifestyle issues such as eating better and exercising.

Attendees of PHA on the Road will have the unique opportunity to meet with others in their local regions, from patients and caregivers to medical professionals. Each forum will provide pre-forum support group sessions for attendees to learn from each other. Groups will be held for newly diagnosed patients, veteran patients, caregivers and parents of children with PH. Participation in PHA on the Road is free, but registration is required. Space is limited so early registration is strongly suggested. Visit www.PHAssociation.org/OnTheRoad for more information. Questions regarding PHA on the Road can be directed to OnTheRoad@PHAssociation.org or 301565-3004 x768.

Your Patient Advocates Department Spotlight: Disability and Appeals

by Nicole Zatkoff and Ralyne Hall

C

aring Voice Coalition and its Disability and Appeals Department understands how denials of prescription coverage and the Social Security Administration’s disability process can be stressful and confusing for those impacted by a chronic illness.

With this understanding, Caring Voice Coalition developed a highly qualified department dedicated to helping its patients appeal denials of prescription coverage and navigate through the complications of applying for disability. Our assistance extends from providing basic knowledge of the disability process to representing patients in filing their disability application and representing patients before an Administrative Law Judge.

Led by our very own attorney, Miranda James, and patient representatives, Nicole Zatkoff, JD, and Ralyne Hall, MSW, our team has experienced tremendous success advocating for our patients with a success rate of over 90 percent. Whether you are just thinking about starting the process or your case is at the administrative hearing level, our disability department is available to assist you. We provide step-bystep assistance and support with what can seem to be an overwhelming process. If you are interested in our assistance with any part of the disability process, please contact us. If authorized by you, we will work with your health care team to help develop and build a favorable claim.

Another function of our department is assisting patients with medication denials. If needed, we will submit letters of appeal and advocate on your behalf with your insurance company to work towards getting your specialty medication approved. The number one goal at CVC is to help patients “Get Back to Life.”

Let CVC’s Disability and Appeals Department advocate for you!

To learn more about CVC’s Disability and Appeals Department visit our Vimeo channel

Pulmonary Hypertension: A Patient’s Survival Guide • A resource book written by a PH patient and published by the Pulmonary Hypertension Association. Essential reading for those living with PH • $25.00 or $15.00 for PHA Members, available exclusively at phassociation.org

Fitbit Ultra • The FitBit wirelessly monitors how many steps you take in a day. It is an excellent source for keeping track of your exercise and setting new goals • The device also monitors your sleep patterns so you can learn how long and how well you are sleeping • Available at FitBit.com for $99.95

OMMUNITY

Marketplace

Lumex Walkabout Lite Four-Wheel Rollator • Designed with an aluminum frame, this lightweight rollator weighs only 14.5 pounds and supports up to 300 pounds • The four-wheel rollator is a comfortable mobility companion for indoors and out that folds easily into a compact storage unit.

• Available at Parentgiving.com for $92.31

Huntington’s Disease Society of America Bracelet • Help spread the word about HDSA by wearing this vibrant blue HDSA “Care2Cure” bracelet • Bracelets are sold in bags of 10 for $22.00, and are available exclusively at HDSA.org.

CADEX® 12 Alarm Medication Reminder Watch • 12 ALARM Daily Medication Reminder w/sound Alarm or Optional Text Message • Easy to program - Recommended by Good Housekeeping • $99.95 including FREE shipping (1 yr. warranty/30 day money back guarantee) • Available at www.CadexWatch.com

Caring Voice Community Subscription • Want to receive this magazine year round? Log on to our website and subscribe to Caring Voice Community.

The proceeds from subscriptions make publishing the magazine possible.

• $10 for four issues a year • Available at www.CaringVoice.org

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Physician diagnoses patient with CVCsupported disease

Ex m pr ed pen es ic s cr a iv ph ibe tion e ys d b is ici y an th e

CVC at a Glance

Patient is referred to CVC for financial assistance

A guide to who we are and what we do

CVC speaks to patient to complete the application process

Patient receives a call from CVC to inform of grant approval

2003 Caring Voice Coalition is incorporated

CV not C Spe ifies Pha cialty pati rmacy ent ’ s g of stat rant us 32

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2004

2005

CVC establishes their Financial Assistance, Insurance Education and Patient Support programs serving chronically ill patients with Alpha-1, Pulmonary Fibrosis and CGD

Patient speaks to Specialty Pharmacy and places an order for medication

CVC adds Pulmonary Hypertension to list of supported diseases.

Number of patients assisted grows from 300 to more than 3,000

Get Back To Life!

2006 CVC hires 20th staff member and expands from 1,700 sq. foot office to 4,000 sq. foot office in Mechanicsville, VA

Our Patient Population

By Location 801+ 601-800 401-600 201-400 1-200

28 %

By Gender

72 %

2007

2008

2009

2010

2011

CVC holds first Trio 2 Triumph Gala Fundraiser at historic Jefferson Hotel in Richmond, VA

CVC adds Huntington’s Disease to its list of supported diseases.

Number of patients assisted in 2008 is more than 8,000

CVC adds Complex Partial Seizures and Infantile Spasms to its list of supported diseases.

Number of patients assisted in 2009 is 10,000 plus.

CVC holds its first Weekend Wellness Retreat sponsoring patients and caregivers

CVC adds Narcolepsy and Factor XIII Deficiency to its list of supported diseases.

Number of patients assisted in 2011 is 12,000.

By Age

2012 CVC publishes first issue of Caring Voice Community magazine. Since 2003, Caring Voice has granted more than $170 million to patients

0-30 31-59 60+

In Their Words Matthew Pless, Alpha-1 patient As told to Alex Withrow

Since he was diagnosed with Alpha-1 Antitrypsin Deficiency in March 2010, Matthew Pless, 48, has made it part of his daily routine to stay in impeccable physical condition. This September, Pless will embark on a 140 mile hike from Badwater Basin, Death Valley to Mt. Whitney near Lone Pine CA. for the seventh time. Here, in his own words, he describes his disease, and how staying fit continues to save his life.

My father was career Navy, and when I was growing up, he was stationed at Miramar Air Station in San Diego. One year, he took leave to take my family and I hiking in the Sierra Nevada Mountains. We tried the trip and my dad got lung troubles. Plural. We didn’t know exactly what was wrong with him, but we learned later that he had Alpha.

We never got to finish that trip, and part of me was never okay with that.

When I turned 40 it occurred to me that if my dad and I were going to do something together, like finishing this hike that we started, then we’d better do it soon.

I realized the lowest point in the continental US and the highest point in the continental US are only about 140 miles apart. I called my dad, asked him if he would be up for it, and he was in.

On that attempt, in 2006, we didn’t complete our entire hike because dad struggled so much with his lungs, but regardless, it really was a terrific time.

The next year, my brother and I tried again and finished the whole trip.

It was right around that time that I had knee surgery, and following the surgery, I had a blood clot form. The doctor suggested that I exercise vigorously and often, to make sure I regain full blood flow. After a few years of exercising everyday, I realized that I didn’t have the stamina I did when I was younger.

Turned out my fatigue was actually Alpha-1.

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Doctors told me to exercise hard, stay healthy, and push my cardiovascular system, which turned out to be fun. I became more involved with my son’s scouts program, and formed great fellowships with a number of people.

Doing this hiking trip over and over again has proved to be a huge bonus in a number of ways. I’ve done the hike with friends, with my wife, with my kids; it’s a great way to form long lasting relationships.

There are seven of us going this year.

My older brother is going to be our logistics guy, and my younger brother, who is undoubtedly Alpha, will hike it for the first time.

It’s a very rugged hike, much of it is off road. But the altitude is the most difficult part to get adjusted to. On any given day, you’re walking up and walking down thousands of feet, so there are things you have to get acclimated to quickly in order to make it through.

No one is immune to that altitude, but there are techniques you can master, like consciously over breathing, that will make all the difference.

I’m aware that if I continue to lose lung function, then I won’t be able to do the hike at all. But for the time being, I’m functional at those altitudes, so I can’t wait to get back up there.

Want to hear more of Matthew’s story? Visit CVC’s Vimeo page

Last Night a Support Group Saved my Life Alpha-1 Antitrypsin Deficiency Alpha-1 is a genetic condition passed on by parents to their children that can cause serious liver and/or lung damage

Common symptoms include: shortness of breath, wheezing, coughing, respiratory infections and deterioration of lung function Roughly 1 out of 2,500 people in America have Alpha-1 About 10 to 15 percent of all liver transplant candidates have the Alpha-1 related genetic abnormalities An estimated 20 million people in the United States are undetected carriers of an abnormal copy of the gene that causes Alpha-1, and may pass the copy of the gene on to their children

By Debbie Castro

L

iving with a chronic condition can often feel like fighting an uphill battle. When the chronic condition is a rare disease, that battle feels awfully lonely. Your family, friends and coworkers may not understand how your life has changed, and some of them may even deny your illness or refuse to help you.

Your medical professionals can provide you medications and recommendations to manage your disease, but other patients can provide support. In essence, support groups are your prescription for hope.

My job is organizing pulmonary hypertension (PH) support groups across the country, but I also know the power of support groups to bring patients comfort. My sister was diagnosed with pulmonary hypertension in 1998. She was living in a town of 4,000 people in the middle of nowhere, Texas. She didn’t look sick, but she struggled every day with shortness of breath and fatigue. People in her town accosted her because she used the handicap spots in parking lots. She met another patient (in that very small town!) and they formed a support group to vent and to share and encourage each other.

What can a support group offer you?

The biggest benefit of a support group is the chance to talk with people who truly understand what you’re going through—because they are experiencing it, too. Frustrations, challenges, small victories and personal growth are easier to share with people who empathize.

The first time a PH patient meets other people with PH is an enormous relief. Some are afraid to attend a group because they expect a level of

Roughly 1 out of every 2,500 people in America have Alpha-1 Courtesy Alpha-1.org

A recent PHA-sponsored support group

Director of Volunteer Services for Pulmonary Hypertension Association

sadness. We do see tears—but tears of joy and tears of relief to see others surviving and living their lives to the fullest.

One of our patient support group leaders once said, “nobody knows what I go through, what I’ve been through, or what my family goes through except for other patients. Every journey is so much more meaningful, every success so much sweeter, every day more precious. And hope is so powerful. I think that is the main reason I like the role of support group leader. I am hopeful, and it shows… and it is contagious.”

A place to share

Attending support groups gives you a chance to share your experiences. You can help others by telling your story, offering tips or listening to a newly diagnosed patient. Your compassion and insight can make a big difference to someone else.

In Bethesda, Md., I saw a newly diagnosed patient transform from fear to hope by meeting a patient who has survived PH for 25 years. Everyone in that meeting walked away completely inspired and uplifted by the experience.

A source of practical ideas

Support groups provide practical help too. Those with years of experience managing their disease can provide many suggestions on daily living and coping. Newly diagnosed patients really need this information, and survivors are eager to give back by sharing what they know. I’ve seen patients share diet and nutrition tips, others share ideas on how to communicate their needs to loved ones, and convenient ways to travel. You never know what you might learn and what you can teach others at a meeting of patients.

A place to fight back

Some support groups may also provide an outlet for fighting back in your disease community.

Many PHA support groups are involved in advocacy letter-writing campaigns or fundraisers.

The explosive growth in PH research and drug development over the past 15 years was spurred by our support groups who advocated with doctors, lawmakers and drug companies. Today, support groups continue to raise awareness and funds for a better tomorrow.

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Summer Glow

Splashes of water, dance in the air pools, lakes, & oceans, become a place to share The worries of life, seemingly left behind if only for a moment, beneath the sunshine As the warmth of the sun’s rays, touch your cheek it is nature’s way of talking, without needing to speak Saying Summer is the season, to discover laughter and joy retreating within, to find that little girl or boy So you can venture outside, after being in for so long and those confined feelings, momentarily are gone Enjoying the waters, even if only watching the show creating a happiness in your face, called a Summer Glow -Amy Jackson

Drawing by Ken Jorgenson

HAVE YOU ENJOYED WHAT YOU’VE SEEN? Caring Voice Community is funded in full by your donations. Please consider donating to Caring Voice Coalition, and in return, we will dedicate ourselves to providing pertinent, educational content through this publication.

Thank you very much for your generosity.

Donations can be mailed to:

Caring Voice Coalition 888-267-1440 8249 Meadowbrige Rd. www.caringvoice.org Mechanicsville, VA 23116 magazine@caringvoice.org

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Case Management, Referral Processing & Clearance, REMs program management, Financial Assistance Programs, Custom Adherence & Therapy Education and Data Management

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CASinfo@caringaccess.com 8247 Meadowbridge Rd Mechanicsville, VA 23116 1-877-547-7135