COMMUNITY Magazine, Spring 2012 - Why this man is not a hero by Caring Voice Coalition

caring voice

COMMUNITY Volume 1 • Issue 1 • Spring 2012

The Quarterly Publication of Caring Voice Coalition, Inc.

WHY THIS

MAN

IS NOT A HERO A 9/11 Rescue Worker Living with Pulmonary Hypertension

IN THIS ISSUE

pg.18

Dancing the Vegas Strip with Narcolepsy Examining the FDA’s Drug Approval Process Overcoming Stress In the Face of Chronic Disease Patients vs. Medication Compliance Health Care Reform: A Timeline

An online resource designed for people living with PAH www.InsightsOnPAH.com InsightsOnPAH.com was developed to help you learn more about PAH, including its signs and symptoms, how PAH is diagnosed, options for treatment, and useful tips for living with PAH. A variety of materials are available to download—visit InsightsOnPAH.com to learn more about PAH.

Insights is an educational program designed exclusively for individuals with pulmonary arterial hypertension and those who care for them—brought to you by Gilead Sciences, Inc.

Cover Story

ontents

To Hell and Back New York City through the eyes of a 9/11 rescue worker living with PH

Letter from the President An introductory letter from Pam Harris

Our Programs Explaining Caring Voice Coalition’s programs

The Diseases CVC Supports Pulmonary Hypertension, Narcolepsy, and more...

Shadow Dancer A tale of Narcolepsy: from the lowest lows to the Vegas Strip

Following the Lead Patient Association Profile: Pulmonary Hypertension Association

Making Strides Examining the FDA’s drug approval process

The Other Drug Problem The battle between patients and medication compliance

Eat Well, Live Better Steps on how to improve your diet and overall well-being

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

The Long and Short of It Balancing your budget in the face of chronic illness

Improving Your Fitness Spring workouts, yoga, and more...

Health Care Reform A detailed timeline examining health care reform

Community Marketplace Items you may find helpful

Social Security Disability An overview to understanding your disability

The First Voice You Hear Highlighting CVC’s Communications Department

In Their Words Mack McCarthy, PH Patient

Newsmaker Q & A Dr. Paul Fairman, Pulmonologist

PHA Conference Easy steps on how to register

Please Recycle this issue.

Specialty Pharmacy. Experienced Care. At Accredo, our job doesn’t end when a patient’s medication has been dispensed; in fact, it’s just beginning. As one of the nation’s leading providers of specialty pharmaceuticals, we understand it can be difficult to cope with a complex condition. That’s why our dedicated care teams work diligently to coordinate solutions for the challenges our patients face. Whether teaching a patient how to administer therapy or providing side effects counseling, we’re people who know specialty therapies. That’s the Accredo difference.

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a medco company is a registered trademark of Medco Health Solutions, Inc. Accredo Health Group, Inc., is a wholly owned subsidiary of Medco Health Solutions, Inc. © 2012 Medco Health Solutions, Inc. All rights reserved. PAH-00149-020112 amc4061

caring voice

COMMUNITY Volume 1 • Issue 1 • Spring 2012

The Quarterly Publication of Caring Voice Coalition, Inc.

WHY THIS

MAN

IS NOT A HERO A 9/11 Rescue Worker Living with Pulmonary Hypertension

IN THIS ISSUE

pg.18

Dancing the Vegas strip with narcolepsy Examining thE FDa’s Drug approval procEss oVercoming stress in the Face oF chronic Disease patiEnts vs. mEDication compliancE health care reForm: a timeline

We’d like to hear your feedback on this issue. What did you like or dislike? Submit your comments to magazine@caringvoice.org

Staff Publisher Pamela Harris

pharris@caringvoice.org

Editor in Chief Alex Withrow

888.267.1440 x 144 awithrow@caringvoice.org

Artistic Developer Taylor Scott 888.267.1440 x 117 tscott@caringvoice.org

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

Contributors Tim Robertson

The Other Drug Problem

Miranda James

Understanding Social Security Disability

Mack McCarthy In Their Words

Pam Speich

Eat Well, Live Better

Jane Brandenstein Physical Activity

Rebecca App

Financial Stress

Terri Seargent

Health Care Timeline

Karen Levitt

The Binding Discipline

Suzanne Flood

PHA Conference

Thao Trang

Graphic Artist

Letter from the Editor

rom the onset, the purpose of Caring Voice Community has been to educate. Educate our patients on the diseases they have, educate physicians and pharmacists about the diseases we support, and educate the general public about what it means to live with a chronic illness.

While drafting this inaugural issue, I had the distinct pleasure of interviewing several of our patients, including Dennis Stavropoulos, the subject of our cover story.

Dennis’ story – that of a New York City police detective who, among other things, acted as a rescue worker on 9/11 – had a cinematic quality that words on paper simply did not do justice. A phone call wasn’t enough. So in late January, myself and Taylor Scott traveled to downtown Manhattan to visit Dennis at Ground Zero. Our time with Dennis had a profound impact on me, and I only hope that his story, along with the accompanying photos, move you as much as they moved me.

Dennis’ story is one of inexplicable hope. The man has been to hell, and yet he continues to carry himself in such a gracious manner, that it is truly inspirational. This magazine is dedicated to him, along with all of our other patients who wake up everyday and make a conscious effort to fight for their lives. I hope this magazine, and its subsequent issues, help educate and motivate you. You are an inspiration to us all. Keep fighting. Alex Withrow Editor In Chief

Alex Withrow holds a degree in Print Journalism and is responsible for many of the articles and photographs found in this issue. He has worked with Caring Voice Coalition since August 2011, where he currently serves as the Marketing Team Coordinator.

Letter from the President

ello and Happy Spring!

We are pleased to bring you the inaugural edition of Caring Voice Community Magazine!

We’re not only here to help financially, but also to equip patients and those within the health care community with present-day knowledge and education about healthy lifestyle choices. We’re also here to offer a steady stream of information and support to assist with the barrage of choices a person must make each day.

Pamela Harris CVC Cofounder & President

Caring Voice Community is featured online in its entirety at CaringVoice.org

Did You Know? Caring Voice Community is issued to roughly 40,000 people every quarter

It seems that the “hot” topic on everyone’s mind this year is health care reform. Change is upon us — perhaps the most significant we’ve seen in decades. The current health care reform dispute has generated many opinions, views and perspectives. How many times have you thought, “I wish I knew more about that subject?” or, “Where can I find out more about health care reform?” Most of us have asked ourselves those same questions, and in my opinion, the new health care reform act is one of the most complex laws introduced in our generation. Staying current with all of the upcoming health care changes and how they will impact a person with a chronic condition is at times nothing short of mind boggling. Rest assured, CVC has a plethora of information to keep you up to date and informed on all of the vital topics affecting the communities we serve.

Each issue of Caring Voice Community magazine will provide first-hand information and feature current articles from experts in the field. I continue to be amazed by all the knowledge and wisdom we have at our fingertips; these experts have helped bring CVC to a higher level of service. In this issue, we have provided articles that will inspire and encourage you. We sincerely hope that you enjoy, share, and would want to advertise in our new magazine.

One thing is certain, as we progress through 2012, we can expect more changes, more challenges and more opportunities within the health care arena. We welcome your comments, input and ideas. Please feel free to e-mail them to magazine@caringvoice.org. May you enjoy each day, and please have a healthy, happy spring. Sincerely,

Pam Harris Cofounder & President

the three words project Every so often, Good Morning America includes a segment in its show in which viewers submit a video or still image of nothing more than their facial expression and three written words to convey their present mood. So we’ve decided to adopt that idea and incorporate it into our magazine. Throughout this issue, you will see various staff members of Caring Voice Coalition proudly raising the three words of their choice. The purpose is twofold: you get a better idea of who we are, and we will hopefully get a better idea of who you are when you submit your three words photo to us.

CVC’s Lauren Ruiz

caringvoice.org

Spring 2012

Submit your three words photo to magazine@caringvoice.org for a chance to see yourself in our next issue!

Programs F

inancial Assistance Patients

diagnosed with chronic conditions often face expensive copayments for their life-saving medications and therapies. It is extremely important for patients to maintain health insurance to cover expensive medical costs. Caring Voice Coalition provides financial assistance to eligible patients, in the form of monetary grants, to help remove the barriers to starting or remaining on their therapy. CVC’s grants involve helping the patient afford copayments for patients’ expensive prescription therapy, helping the patient pay the premium for their health insurance coverage or various other selfpay responsibilities related to prescription therapy. Our grants may be applied for online or by calling one of our case managers. Grants are typically processed within 24 to 48 hours.

nsurance Education & Counseling

Our Insurance Education & Counseling (IEC) Department offers both Alternate Coverage and Social Security Disability & Appeals Assistance. We know that understanding insurance and working through denials of coverage or disability can be complicated. Our experienced IEC Specialists are here to help.

current benefits, help resolve coverage issues and assist patients in identifying and exploring sources of new or improved coverage.

Social Security Disability & Appeals Assistance

Patients seeking disability benefits or facing a denial of coverage can often become overwhelmed by the complex steps and issues involved in the application or appeals process. Our experienced specialists can guide and represent patients through the processes involved in proving entitlement for Social Security Disability or appealing a denial of coverage for a prescribed therapy.

atient Support

We understand that it can be hard to cope with a chronic illness. You may experience fear, confusion, frustration, and anger. These emotions can prevent you from making the best decisions for your physical well-being. This is why Caring Voice offers a Patient Support Program. Our Patient Support Team will identify public and private programs and services that may be of benefit to patients. Our goal is to connect patients and their loved ones with services that will make life a little easier–emotionally, socially, and financially.

Alternate Coverage

Patients that come to us for assistance often have trouble finding affordable insurance plans or may encounter unfamiliar insurance requirements. Our IEC Alternate Coverage specialists investigate, review, and explain

Visit our website at CaringVoice.org to learn more about the programs we offer

Mark Your Calendar Upcoming Events

April

April 10-13 - World Orphan Drug Congress, Washington DC April 14 - Team Hope Walk hosted by the Huntington’s Disease Society of America, Jacksonville, FL April 28 - 4th Annual Scramble for a Cure Golf Tournament to support the Pulmonary Hypertension Association, Las Vegas, NV April 28 - 2nd Annual Walk 2 Cure PH: The Ellie Godina Memorial Walk, Euclid, OH

May

May 6 - Stride for a Cure 5k hosted by the Pulmonary Hypertension Association, Chicago, IL May 9 - National Hemophilia Foundation’s 2nd Annual Spring Soiree, Manhattan, NY May 12 - Pulmonary Fibrosis Walk, Pasadena, CA

May 18-23 - American Thoracic Society International Conference, San Francisco, CA

June

June 8-10 - 21st Annual National Education Conference for Alpha-1, Seattle, WA

June 8-10 - Huntington’s Disease Society of America Annual Convention, Las Vegas, NV June 27-29 - PH Conference and Scientific Sessions, Orlando, FL

The Diseases We Support

Alpha-1 Antitrypsin Deficiency

Alpha-1 antitrypsin is a protein that protects the lungs. Without enough of it, the lungs are vulnerable to conditions like emphysema and chronic bronchitis. Alpha-1 Deficiency is a genetic disorder; inherited or passed down at birth. It can cause liver and lung disease in both children and adults. People with the disease are extremely vulnerable to lung damage from smoke, making cigarettes especially dangerous for people with the disorder.

Chronic Granulomatous Disease

Chronic Granulomatous Disease (CGD) is an inherited abnormality of certain cells of the immune system. These cells have difficulty forming the reactive oxygen

Myrna Etheridge (left), a CVC patient with Pulmonary Hypertension standing with CVC’s Kathleen Horner

caringvoice.org

Spring 2012

compounds used to kill bacteria. CGD causes repeated bacterial infections, and without treatment, the disease can be fatal.

According to Discovery Health, if a disease is considered “rare” in the United States, then it affects fewer than 200,000 people.

experience uncontrolled movements, behavioral disturbance, and cognitive deterioration. Huntington’s is an inherited condition Complex Partial Seizures caused by a single abnormal gene. If one A complex partial seizure is a seizure that parent has the faulty gene, there is a 50 results in an alteration in consciousness. percent chance that offspring will have the During a complex partial defect as well. The condition Did you know? seizure, the person cannot typically reveals itself between interact normally with other the ages of 30 and 45. Early people, is not aware of his or her symptoms often include movements, and usually cannot To view our patients’ personality changes, decreased remember afterward what stories, visit our Vimeo cognitive abilities, balance channel at vimeo.com/ problems occurred during the seizure. and involuntary thecaringvoice Because the person may facial movements. As the still be able to perform routine tasks such disease progresses, patients often develop as walking, the seizure may not always uncontrolled, jerky movements (called be noticeable to others. Complex partial “chorea”), dementia, and problems with seizures often last for two to four minutes, speech and swallowing. and they may be followed by a long-lasting Infantile Spasms state of confusion. Infantile spasms (also called “West Congenital Factor XIII Deficiency syndrome” after the physician who first Factor XIII is the protein responsible for described the spasms in the 1840s) are a stabilizing the formation of a blood clot. In special form of infant epilepsy. The spasms the absence of Factor XIII, a clot will still commonly begin between four and eight develop but it will remain unstable. When months of age and gradually disappear someone has a deficiency of Factor XIII, during the second to fourth year of life. the tenuously formed clot will eventually In the most common form of the disease, break down and cause recurrent bleeds. the body bends as the arms jerk outward. The prolonged bleeding with Factor XIII Less often, the head is thrown back as the patients is usually associated with trauma. back arches and the arms and legs stiffen. Factor XIII condition is perhaps the rarest Spasms last for a few seconds but quickly of all factor deficiencies. The incidence of recur, usually in a series of five to 50 seizures. Factor XIII Deficiency is estimated at one Children with infantile spasms may have in five million births. It is inherited in an several hundred seizures per day. Shortly after the spasms begin, afflicted autosomal recessive fashion, which means it children often stop making developmental affects men and women equally. progress. Only 10 to 20 percent will have Huntington’s Disease normal mental function. Huntington’s Disease is a progressive, Narcolepsy degenerative disease that causes certain Narcolepsy is a chronic sleep disorder nerve cells in the brain to deteriorate. characterized by excessive daytime As a result, adults afflicted by the disease

sleepiness (EDS) in which a person experiences extreme fatigue and often falls asleep at inappropriate times, such as at work or school. Narcoleptics usually experience disturbed nocturnal sleep, often the result of insomnia, resulting in an abnormal daytime sleep pattern. Narcolepsy is often associated with cataplexy, a sudden loss of muscle tone triggered by intense emotions, sleep paralysis and hypnogogic hallucinations. While medications help to manage the signs and symptoms of Narcolepsy, there is currently no cure.

Pulmonary Fibrosis

Pulmonary Fibrosis is a condition in which the lungs develop an excess of connective tissue (or fibrosis), known as “scarring” of the lung. As a result, the lungs become thick and stiff over time, and breathing becomes difficult. Other symptoms may include chronic cough, fatigue, chest discomfort, and loss of weight and appetite. Pulmonary Fibrosis is usually, though not always, the resulting effect of other diseases or conditions. Potential causes range from rheumatoid arthritis to inhalation of harmful substances such as asbestos and cigarettes.

Pulmonary Hypertension

Pulmonary Hypertension (PH) is continuous high blood pressure in the

date,

CVC

pulmonary artery. The average blood pressure in a normal pulmonary artery is about 14 mmHg when the person is resting. In PH, blood pressure is usually greater than 25 mmHg. PH is a serious condition for which there are beneficial treatments, but no cure. There are two types of PH:

has received more than

32,000

Primary Pulmonary Hypertension (PPH)- inherited or occurs for no known reason. Secondary Pulmonary Hypertension (SPH) – caused by or occurs because of another condition, including chronic heart or lung disease, blood clots in the lungs, or a disease like scleroderma.

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Paul Athan (seated) a CVC patient living with Huntington’s Disease, with CVC’s Jean Lua (left), Betty Rosevear, and CVC’s Cindy Cross

Shadow Dancer by Alex Withrow

A ballerinaâ&#x20AC;&#x2122;s tale: from the nightmares of Narcolepsy to the Las Vegas Strip

he f ir s t question I like to ask anyone who makes a living doing what they love, is how they initially became inspired by their profession. And in the time I spent getting to know Trinity Hamilton (in our e-mail exchanges and phone conversations, and my subsequent research of her, her work, and her disease), her answer to that question is by far the most profound thing she said to me. But more on that later.

Photo by John Skalicky

THE DREAM Trinity Hamilton became a dancer by mistake. Or, more accurately, by coincidence. When she was four, her dancing in front of babysitters and family members led her mother to enroll her in a ballet studio. By nine, it was an ongoing joke within the family that Trinity was going to skip college and be a professional ballerina. By 16, she was dancing six days a week and competing regularly. “From that very early age, I was fascinated by dance,” Trinity said. “I never wanted to be a cheerleader, or hang out with friends after school – it was all about the dancing.” By her senior year of high school, Trinity had a contract to attend BalletMet in Columbus, Ohio, which she ultimately turned down as the result of a debilitating back injury. A few years later, she was a dancer with Joffrey Ballet in Chicago, which The New York Times has described as one of the top three ballet companies in America. Joffrey was everything she had hoped. She was “eating, sleeping, and living dance;” carrying out the dream that she had set for herself as a young girl. But in 2000, her childhood Trinity Hamilton, age 6 bouts of exhaustion (which she and her family had always written off as fatigue from dancing and going to school full time) were catching up with her. Whenever the dancers were given a short break, you could often find Trinity asleep in a corner somewhere. She began falling asleep on the train to work and on the train going back home, often waking up in seedy areas of Chicago. She began to speak incoherently, unaware of what she was saying, and hallucinating regularly. Finally, her ballet master suggested she see a doctor, and when she was 20 years old, Trinity was diagnosed with Narcolepsy. THE DISEASE “Myself and the specialists I work with actually don’t know when I started getting narcoleptic symptoms,” she said. “Because looking back, my parents and I realize that sleeping had been an ongoing struggle of mine for quite some time.” The medication Trinity was prescribed “helped her get through the day,” but two years later, she started feeling symptoms of cataplexy, an affliction often associated with

Narcolepsy in which patients suffer chance bouts of muscle loss and/or weakness. These attacks, while usually brought on by strong emotions, occur at random and have proven to be fatal. “I didn’t even know what cataplexy was,” Trinity said. “I was diagnosed, and soon prescribed medication. It helped, but I was always so afraid of falling on stage. And with that fear came doubt and lack of confidence. That’s when things started to get really bad for me.”

THE DOWNFALL In the years after being diagnosed with cataplexy, Trinity said she began losing everything – confidence, the ability to stay awake during rehearsals, control over her limbs and movements – everything. In 2004, she left the stage and moved to Florida to be closer to her parents. She attempted to remain active within the dancing community, teaching and choreographing at schools, and even acting as the ballet director and resident choreographer for the New Tampa Dance Theater. But when she was alone, a perfect storm of pity, self doubt and regret boiled inside her. She gained weight, left the house less and less, and became stuck in her own depression. “I was at the lowest of my lows,” she said. “I remember looking in the mirror and not seeing a dancer anymore. I had no idea what I was doing with my future. It was a very scary time for me.” In the midst of her depression, Trinity crossed paths with a “phenomenal and remarkably patient” individual named Dr. Neil Feldman, who currently serves as the Medical Director of the St. Petersburg Sleep Disorders Center in St. Petersburg, Florida. Dr. Feldman understood. He listened. He offered Trinity medical advice in the form of Xyrem, a common medication prescribed for Narcolepsy. Trinity was opposed to the idea of going on Xyrem. She feared the lifestyle change, and the drug’s potential side effects. After years of patiently attempting to convince Trinity that Xyrem was her best option, Feldman set up an interview between Trinity and one of his patients who was on Xyrem. That helped. “A few days later, I began taking Xyrem,” she said. “And everything started changing. Everything.” THE RESURRECTION Finding a suitable dosage and getting used to the side effects of Xyrem proved to be a difficult process for Trinity, but once she found the right balance, everything began to fall into place. After the first month, she was not only staying awake throughout the day, but remaining alert as well. She could drive, she could think – she felt productive for the first time in years. During the second month, the symptoms for cataplexy became dormant. “Slowly but surely, I began feeling normal again,” she said. “And that’s when I realized I needed to get into shape.

I was given a second chance, and I had to give it another try.” It’s a long road from your self-described lowest low to a stage on the Las Vegas strip, and it didn’t come easy. Trinity put herself through a “Biggest Loser-style boot camp,” practicing hot yoga regularly, hiring a personal trainer, shedding pounds; whatever it took to gently ease her point shoes back on. By the summer of 2008, nearly a year after starting Xyrem, she was back to her “fighting weight.” She attended a professional workshop in San Francisco with Lines Ballet Company, and it was there that Trinity was given the big push she needed. “The artistic director of Lines was a former colleague of mine at Joffrey,” she said. “And he kept encouraging me to stop teaching and get back on stage. That was a big jump for me, having other professional dancers telling me that I needed to be performing.” After auditioning for a few companies, she packed up and prepared to move to L.A. Days before she was set to move, she received a call from Cirque du Soleil asking her to come audition for Mystère in Las Vegas. She flew to Vegas and auditioned on Halloween day, 2009. In mid-November, Cirque called back with their offer. A month later, Trinity was living in Las Vegas as a working dancer with Cirque du Soleil. “It’s funny,” she said. “Attending Joffrey was my childhood dream, and once I started getting back into shape, Cirque du Soleil was everything I wanted for myself. It was one of those amazing dream come true situations. Again.”

caringvoice.org

THE LIFE Here’s how a day in the life of a Mystère dancer typically works: You arrive at the Treasure Island theater by 4 p.m., rehearse, do a show (or two), leave at 11:30 p.m., home by midnight, wind down, go to sleep. You’re off Thursdays and Fridays, two weeks in January, a week in May and a week in September. You work every holiday, totaling roughly 475 shows a year.

I was given a second chance, and “I realized I had to give [dancing] another try. Trinity’s first year in Vegas was tough. She didn’t know anyone, she was getting used to the town and the lifestyle, adjusting to a new sleep schedule, and so on. It was all work for her. “It was important to make sure I could live up to the challenge,” she said. “So for that first year, I was firing on all cylinders. I had to make it through that first year with no problems.” The hard work paid off. Her dancing was strong, her confidence was newly fulfilled; she was back to living her dream. THE MOTIVATION Today, Trinity has made a life for herself in what she describes as a beautiful town. “Vegas has this persona of being… Sin City,” she says with a laugh. “But outside of that, it really is a lovely town, a sprawling suburbia off the Strip. It’s actually a very normal life.” When I ask her if her sleep is okay, she eases out a, “Yeah,” with an audible sigh of relief.

Photo by Denise Laurin

Photo by Chris Crader

Spring 2012

“I have to make a point to sleep,” she says. “So sometimes I miss out on things. It’s Vegas, so there is something to do at every hour. But birthday parties, or get-togethers after shows, I usually have to skip out on those. Sometimes I’m asked to volunteer for PR gigs with Cirque, which I’d love to do, but because they are early in the morning, I just can’t. Medically, I can’t. It’s a little tough, missing out on those social engagements, but I have to get eight hours of sleep.” When I broach the issue of how Narcolepsy is often depicted with humor in pop culture, Trinity’s tone becomes serious. “It is an extremely misunderstood disease,” she says. “In terms of how it is depicted, it’s just a matter of getting people educated. People think that Narcolepsy is uncommon, and I know it is considered a rare disease, but statistically, it’s as common as Lou Gehrig’s and MS, I believe.” (According to the National Library of Medicine, approximately 15,500 Americans live with Lou Gehrig’s disease, 155,500 have Narcolepsy, and roughly 300,000 people suffer from Multiple Sclerosis.) “You bring up Narcolepsy, and people know it as that falling-asleep disease,” she says. “But there’s a seriousness about it

that people should be aware of. The more education there is about it, the closer we may be to finding a cure.” When asked if she has any advice for people who are afraid to fight for their dreams, Trinity’s response is optimistically direct. “Everyone has challenges in their life,” she says. “Even in the darkest of times, I reminded myself that I had to value and appreciate what I had. I honestly do not know what inspired me to become a dancer. That remains one of those beautiful mysteries. But I’ve always been inspired by other amazing stories. By people who have fought in wars, or have other diseases, or stay at home and raise their children. We all have our challenges, but in terms of living out our dreams, of taking that leap, the biggest fear is within ourselves.” It’s interesting that Trinity gains inspiration from other amazing stories. Call it a hunch, but it wouldn’t be surprising if hers inspires a few people as well.

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Following the Lead by Alex Withrow

he Pulmonary Hypertension Association’s motto is Empowered by hope, a brief summation that speaks volumes. It says that, while they do indeed help thousands of patients with Pulmonary Hypertension, thereby making them powerful, they are fueled by the hope that their patients exude. It is their patient community that motivates them to do what they’ve done for more than 20 years. Hope, through help. PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.

Our community is a huge tent for anyone affected by the disease. Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born. “From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension

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Spring 2012

Patient Association Profile

Pulmonary Hypertension Association Association, and Adrienne Dern, PHA Vice President. What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause. “Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.” Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people. “We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”

In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients. Today, PHA, at the helm of Rino Aldrighetti President and CEO Rino PHA President and CEO Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends. “We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.” Visit phassociation.org for more information

From left: Dr. Raymond Benza, Dr. Robert Frantz, and Jessica Lazar, PA, climbed Mount Kilimanjaro to raise PH awareness

we are

committed to PAH “It has always been our goal to build a portfolio of products from the powerful class of prostacyclins that will create viable treatment options for patients along the full continuum of this life-threatening disease.” —Martine Rothblatt, PhD, Chairman and CEO United Therapeutics Corporation

ART_PHIntlCorpad3_MAY10v.1

1388 UT Scleroderma Voice Ad.indd 1

9/10/10 3:57 PM

MakingS t r i d e s by Alex Withrow

etting a drug approved by the U.S. Food and Drug Administration (FDA) isn’t easy, nor concise. Depending on what type of approval track the FDA elects to give a specific drug, medications from conception to marketed release often take longer than a decade. And, because of the rarity of the affliction, drugs for chronic and orphan diseases typically take even longer. So now, with help from officials at the FDA, Caring Voice Community sheds light on the FDA’s drug approval process by examining and explaining each step of the progression. Step One: Preclinical (animal) testing According to the FDA, most drugs that undergo animal testing never make it to human testing and FDA review. When a drug does make it past this initial step, the drug company must then prepare for the FDA’s rigorous testing process.

Examining the FDA Drug Approval Process

“If you’re a company, you don’t want to start doing clinical trials without first having a conversation with the FDA,” said Erica Jefferson, spokeswoman for the FDA Office of Public Affairs. “You want to make sure that the studies you’re developing meet the standard threshold for the agency.” Step Two: An investigational new drug application (IND) outlines what the sponsor of a new drug proposes for human testing in clinical trials Once sponsors show the FDA results of preclinical testing, and what they propose to do for human testing, the FDA then decides if it is safe to conduct human testing.

Step Three: Phase 1 studies (testing 20 to 80 people) Phase 1 studies are typically conducted on healthy volunteers, the FDA states. The goal is to determine the drug’s most frequent side effects, and how the drug is metabolized and excreted.

How to Avoid Drug Interactions According to FDA.gov, mixing your prescription medications with various foods, liquids, supplements, and other medications can be dangerous to your health. Here are a few products the FDA wants you to be cautious of when taking medication. Alcohol: If you are taking any sort of medication, it’s recommended that you avoid alcohol, which can increase or decrease the effect of many drugs. Grapefruit juice: Grapefruit juice shouldn’t be taken with certain blood pressure-lowering drugs or cyclosporine for the prevention of organ transplant rejection. Chocolate: The caffeine in chocolate can increase the effects of stimulant drugs such as Ritalin (methylphenidate), or decrease the effect of sedative-hypnotics such as Ambien (zolpidem).

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“There is some time that lapses between each of these steps,” Jefferson said. “Depending on the type of disease, the trial length varies.”

Step Four: Phase 2 studies (testing several dozen to 300 people) According to the FDA, if Phase 1 studies reveal acceptable toxicity, then Phase 2 proceedings can begin. To test the effectiveness of the tested drug, patients receiving the drug are compared with similar patients taking a placebo or a completely different drug. “Trials for chronic illnesses tend to take a little bit longer because you’re looking for long term effects,” Jefferson said. “Depending on the severity of the disease, it may take longer to test the outcome in patients. Those can take three, four, five years, it all depends how long we ask them to follow the patient before they can submit data to us.”

Vitamin E: Taking vitamin E with a blood-thinning medication can increase anti-clotting activity and may cause an increased risk of bleeding. Ginseng: Ginseng can enhance the bleeding effects of heparin, aspirin, and nonsteroidal anti-inflammatory drugs such as ibuprofen, naproxen, and ketoprofen. Ginkgo Biloba: High doses of the herb ginkgo biloba could decrease the effectiveness for patients taking the following medications to control seizures: Tegretol, Equetro, Carbatrol and Depakote. Antihistamines: If you are taking sedatives, tranquilizers, or a prescription drug for high blood pressure or depression, check with a doctor or pharmacist before using antihistamines. Some antihistamines can increase the depressant effects (such as sleepiness) of a sedative or tranquilizer. Antihistamines taken in conjunction with blood pressure medication may cause a person’s blood pressure to increase. For more information on how to avoid drug-interaction problems, visit FDA.gov.

Step Five: Phase 3 studies (testing several hundred to 3,000 people) If Phase 2 shows evidence of the drug’s effectiveness, then Phase 3 can begin. Phase 3 studies gather information concerning safety and effectiveness by studying different populations and dosages while using the drug in conjunction with other drugs. “Phrase 3 is the critical piece for us,” Jefferson said. “For some drugs, like certain cancer drugs, we will approve that drug based on Phase 2 data that we’re reasonably confident in. But the vast majority of trials that the FDA approves are Phase 3 clinical trials. Because by that time, a

Step Seven: Submit the NDA, thereby formally asking the FDA to consider a drug for marketing approval This is the formal step in which the drug sponsor asks the FDA to consider approving the new drug for marketing in the United States. “There are a lot of different components that go into the application once they cover Phase 1, Phase 2 and Phase 3 data,” Jefferson said. “They have to submit everything to us in one package, and we want it all.” Step Eight: The FDA has 60 days to decide whether to file the NDA so it can be reviewed

Over the years we’ve done a lot to provide incentive to companies to develop more products for rare diseases. patient population has been established for a particular disease, the drug is reasonably safe and it is reasonably effective.” After further testing, the FDA uses postmarket studies to gather additional information about a product’s safety, efficacy, or optimal use. “After the drug has been approved, the FDA still wants to see data, so they ask the company to submit data from ongoing clinical studies,” Jefferson said, Step Six: The pre-NDA period, just before a new drug application (NDA) is submitted This is typically when the FDA and drug sponsors meet.

According to FDA.gov, the FDA approved 21 new drugs in 2010, down from 26 in 2009

Step Nine: An FDA review team is assigned to evaluate the sponsor’s research on the drug’s safety and effectiveness “A company can request a fast track designation, which is often used when a treatment presents a significant unmet medical need,” Jefferson said. “Or there is a priority designation in which the agency commits to reviewing and making a decision on the product within six months. So, in theory, the drug could be approved in six months, provided we feel confident and comfortable in the data.” According to the FDA, in accordance with the Prescription Drug User Fee Act (PDUFA), the FDA’s Center for Drug

Evaluation and Research (CDER) expects to review and act on at least 90 percent of NDAs for standard drugs no later than 10 months after the applications are received. The review goal is six months for priority drugs. “The most common path to market is our standard review process, which is 10 months,” Jefferson said. “From the time of submission of the NDA, the agency has 10 months to make a decision on a product. These tend to be drugs that are similar to products already on the market.” Step 10: The FDA reviews information that goes on a drug’s professional labeling Step 11: The FDA inspects the facilities where the drug will be manufactured as part of the approval process A review team analyzes study results and looks for possible issues with the application, such as weaknesses of the study design or analysis. Reviewers determine whether they agree with the sponsor’s results and conclusions, or whether they need any additional information to make a decision.

Step 12: FDA reviewers will approve the application or issue a complete response letter Jefferson says that although approving treatments for orphan diseases doesn’t occur as often as approving drugs for more common afflictions, the FDA has taken active measures to make sure people with rare diseases receive the new drugs they need even faster. And when asked to comment on why the cost of drugs for orphan diseases are often very expensive, Jefferson said the cost of a drug is based, in part, on the length of time it takes to approve, manufacture and market that particular medication, which is generally much longer than drugs for more common afflictions. “Over the years we’ve done a lot to provide incentive to encourage companies to develop more products for rare diseases,” she said. “There are more general approvals for standard diseases, unfortunately, than for orphan disease products, but great strides are being made.” Source material for this article can be found at FDA.gov and clinicaltrials.gov.

TO HELL AND BACK Alex Withrow by

A 9/11 Rescue Worker Living with Pulmonary Hypertension

n late January, I traveled to downtown Manhattan with the sole intention of taking pictures of Dennis Stavropoulos at Ground Zero. I had met and spoken with Dennis several times, including conducting two phone interviews for this story. I had talked to him at great lengths about his time as a detective with the New York Police Department. About how he, and the rest of city’s responders, had been dispatched to lower 1 Manhattan after two planes flew into the World Trade Center buildings. His story, while harrowing, was missing context – it was missing the accuracy of visual imagery. So I proposed that we meet, visit the 9/11 Memorial, and reminisce, which he was fine with, until the day came. I met Dennis on the corner of Albany and West Streets, directly across the street from the Memorial. When he showed up, his obvious anxiousness made it clear that he did not want to go in. He’d been there. He’d seen it. He’d stood beneath the tower that looked like it had “been hit by Godzilla.” He had witnessed. He had worked. And he had no interest in going back. How, or why, could I argue with him? What he soon

proposed was an impromptu tour of New York City and its surrounding boroughs. New York through his eyes. I’d been to New York dozens of times, but as I soon learned, you haven’t seen New York until you’ve seen it through the eyes of a New Yorker. Dennis Stavropoulos was born and raised in Brooklyn, NY. He grew up as a part of what he describes as the final stickball generation. A neighborhood boy. And as we walked around the streets he was raised in, he described the “true” New York from his youth. The French Connection New York – with the subway cars

tagged heavily in graffiti. The Son of Sam New York – when members of the neighborhood put aside their differences to combat a local terrorist. The Taxi Driver New York.

“Taxi Driver is the New York from my childhood,” he said through a deep, purposeful Brooklyn accent. “You’d walk down 42nd street and you’d see it all: the X-rated theaters, the drug use, the casual theft – now there’s a Disney store on 42nd street. It’s a very different city today.”

It was interesting to hear Dennis relate his early years to so many different films, because that is exactly what his latter years reflect: the framework of an influential motion picture.

New York Undercover

When he was 21 – after high school and a bit of college – Dennis became an EMT based out of Bellevue hospital, responding to shootings, overdoses, baby deliveries, you name it. After six years, he joined the police academy on a whim of encouragement from some of his friends who were doing the same. “Joining the police department wasn’t really something I had always thought about,” he said. But soon after graduating from the police academy, he was walking his own beat – responding to calls, taking reports, making arrests, and so on. Looking to make a career out of the NYPD, he transferred to narcotics, which he describes as a dangerous but exciting way to move up in ranks within the department.

Complete Chaos

On the morning of Sept. 11, 2001, Dennis was assigned to work an election poll in uptown Manhattan. When news broke that a plane had hit one of the towers, Dennis waited eagerly for instructions from his command. Then the second plane hit. Then the first tower fell. Dennis closed down the poll and was ordered downtown. “By the time I got down there, the entire city was covered in a thick, dark cloud of smoke,” he said. “There was a layer of debris in the streets, people were running, screaming everywhere. It was complete chaos.” Upon arriving downtown, Dennis was assigned to help secure the site, which he continued to do for several weeks following the attacks. For months after, Dennis worked on a landfill in Staten Island, sifting

We weren’t down there working as heroes. We were there to do a job. “I went undercover, not just in plain clothes, I mean real undercover,” he said. As we walked past Washington Square Park, for example, he told me how he used to buy crack from drug dealers in the park, and then watch from afar as police would raid the park moments later. “That was the job – setting up drug deals, working the players of that culture.” In 2001, after he had made detective for “flourishing” as a narcotics officer, his undercover assignment ended. And then it happened.

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Spring 2012

through the debris of the World Trade Center. “We found everything at the landfill,” he said. “Bones, body parts, wallets, firearms, bullets, office supplies – everything. I didn’t really think about the bigger picture of it all while I was there.” It is because of his time cleaning up debris downtown and at the landfill that Dennis remains averse to visiting Ground Zero. “It’s difficult to explain,” he said. “We weren’t down there working as heroes. We were there to do a job. We worked at least 16 hours a day, digging up everything you can imagine. We didn’t reflect or pause. We worked.” Every night, he’d go home and wash the dust out of his eyes and ears, and blow the dirt and grime from his nose. He’d sleep whatever few hours he could, wake up, and do it all over. Jump ahead eight years and Dennis, now working in the medical examiner’s office, became very ill very quickly. Breathing had become more difficult, and his level of energy was often flat lined. “I was always healthy, I could do

4 anything,” he said. “I was very active. I played on the softball team at work, I was always a golf junkie; but in 2009, things had really gotten worse for me.”

Jumping Hurdles

After several visits to the doctor, Dennis was diagnosed with Pulmonary Hypertension, a disease that causes abnormally high blood pressure in the arteries of the lungs. The disease, which currently affects nearly 30,000 Americans, is often fatal, and has yet to be issued a cure. “When I left the hospital after being diagnosed, I was told what I had, but I wasn’t told the full extent of it,” Dennis said. “So I went home and started researching online, and that’s when I realized how fatal this disease is.” After jumping through the many hurdles of health insurance bureaucracy, Dennis finally found a specialist that not only accepted his insurance, but that he trusted as well. “Finding a specialist was a very difficult process,” he said. “But the cost of finding one you trust makes all the difference.” Dennis has been taking Tracleer, a popular medication that helps combat the symptoms of PH, since early 2010, which he says has greatly improved his overall well being. “Life is harder now, there’s no question,” Dennis said. “If I don’t think and I start doing something physically demanding, I’m soon reminded that I can’t do that. And although I have to take everything a little bit slower, I see such a difference with that drug.” When asked if his Pulmonary Hypertension is directly related to his clean-up work post-9/11, he responds directly, nobly. “I certainly was breathing in a lot of

5 dust and toxins,” he said. “I know other people with PH who also have other issues – emphysema, sarcoidosis, things like that. But my Pulmonary Hypertension stands alone, and the doctors don’t exactly know why. It would be presumptive of me to say 9/11 caused my PH, but it would seem plausible.”

Moving Forward

Today, Dennis lives in Staten Island near the base of the Verrazano-Narrows Bridge, or “the Saturday Night Fever bridge,” as he often calls it, working restricted duty for the medical examiner’s office. On days he has appointments with his doctors, he takes the 25-minute ride on the Staten Island Ferry

to downtown Manhattan. On those days, he likes to walk around the city, taking it all in, thinking, remembering. He’s thought about leaving the city when he retires, but he can’t decide whether the demands of the hustle bustle outweigh its excitement. When he isn’t working, he plays golf when he feels up for it, eats slices of square pizza in Brooklyn with his friends, and checks in on his parents every weekend. While watching the sunset from his apartment balcony, I asked him if Tracleer helps to reinstate some of his physical strength, where does he find the emotional strength to carry on? Given all he’s seen and been through, what makes it worth it?

“You just have to keep doing what you’re doing,” he said frankly. “You have to get to 5 work to pay the bills. When you’re diagnosed with something and considered disabled, it’s easy to get down. There are good days and there are bad days. But you have to wake up. You have to keep moving.” By constantly moving, Dennis’ story continually evolves. The old maxim states that every New Yorker loves and hates the city that never sleeps both equally. Dennis would love to move away, but he’d hate to be far from his family. He’d hate to leave the energy, but he’d love to be somewhere warm. What will be next in this life filled with such cinematic virtues? I’m not sure. I guess we’ll have to wait for the sequel.

1Dennis stands near Ground Zero 2Dennis looking at the Freedom Tower from the Staten Island ferry 3Downtown Manhattan 4Dennis and Taylor Scott look up at the Freedom Tower 5Dennis stands on his balcony as the sun sets over Staten Island photos by Alex Withrow

e very much need your support! In order to accomplish our mission of continuing to cultivate and promote education and knowledge to those affected by chronic diseases, we depend on the generosity of the community to keep our magazine running. Because of your generous donations, we are able to offer this magazine free of charge to the patients we assist. By donating to Caring Voice Community magazine, you will be directly supporting the disbursement of information to patients and physicians across the U.S., allowing this publication to continue to thrive and expand in future issues. If you would like to make a financial contribution, you are welcome to mail in the donation envelope found in this magazine or if you prefer, donations can be made on our website at caringvoice.org. Donations may be tax-deductible and always fully support our patient population. We thank you for reading our magazine and helping to support our organization.

Letter from the Vice President

Sincerely,

Samantha Harris, Vice President

DONATE

The Other Drug Problem The ongoing battle between patients and medication compliance

by Tim Robertson, RPh

have seen this quote from the former U.S. Surgeon General used time and time again to highlight the opportunity of medication compliance in our health-care system. While this statement seems blatantly obvious, we often fail to communicate this very important topic. The health-care team (including the patient) has a huge barrier to overcome. How do we maximize the benefit of the life-saving medications that are available to treat chronic disease?

The Pink Stuff

Five-year-old Abigail goes to the doctor for a sore throat and comes out with a prescription for antibiotics. Even though it tastes pretty nasty, Mom pleads with her to take the commonly known “pink stuff ” three times per day for the full 10 days. Seems simple, but if you are a parent, you know how difficult this is to actually accomplish in the midst of school, work, nap time, changing little brother’s diapers and keeping the house clean for dinner guests. How many times have you been told to “take until it’s gone” or “finish all” but have been unable to? I think we all know that antibiotics work best if taken for the full duration of therapy and yet most of us can admit to not following doctor’s orders at least once in our lifetime. Yes, the stakes are small here; maybe enduring a sinus infection for another couple weeks or even a perforated eardrum here or there, but what about chronic conditions? What are the stakes when we are talking about diabetes, depression, Pulmonary Hypertension or Huntington’s disease?

An injection? No way!

An accomplished teacher all her life, Barbara visits her primary care physician after experiencing several weeks of frequent urination and unexplained weight loss. She has had diabetes for years and takes her medication but she knows full well that something is wrong. She is shocked to

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Spring 2012

“Drugs don’t work in patients who don’t take them.” -- Dr. C. Everett Koop

learn that her diabetes has worsened and is being asked to take insulin via injection under the skin. Even though her doctor informed her that many people take insulin injections daily and that it really does not cause much pain, Barbara struggles to meet the goal of two daily injections, and often misses her evening dose. Does she not understand the devastating consequences of uncontrolled diabetes? Does she not trust

her health care. Do they ever get to talk about how often she forgets to take her insulin? How often does Barbara contemplate her compliance with her medications and what effect that may be having on her life expectancy? In her job as a teacher, Barbara sends numerous e-mails to clients and co-workers, logs on to LinkedIn to keep in touch with colleagues in her field and related

How do we MAXIMIZE the benefit of the life-saving medications that are available to treat chronic disease? the recommendation of her doctor? What is standing in the way of fully complying with the prescription that her doctor has given her? Barbara has a life-threatening chronic condition, not unlike nearly half of all adults in the United States, according to the Centers for Disease Control (CDC). You would think that Barbara and her doctor would be doing everything possible to make the best use of the life-saving medication that was prescribed. But there is something else going on here. Barbara and her doctor are contributing to a compliance problem that is costing us $290 billion dollars annually. When medications are not taken as prescribed, we are not getting their full benefit and therefore, we are wasting money. She is also setting herself up to be one of the 125,000 Americans that die every year due to poor medication compliance. The numbers tell us we as a society have a problem, but do we really believe it?

businesses, and keeps track of her finances online from her mobile device. She is not unlike most Americans in any given socioeconomic status. Almost all of us participate very frequently in social media and other electronic means of communication when it comes to everything EXCEPT our health. For many reasons, we are hesitant to keep our medical information online and our

The Five-minute Consult

The reality of today’s health care system is that we are busy and our physicians are equally busy. Barbara sees her physician every six months as he requests and gets about five minutes of quality time to discuss

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.

physicians are hesitant to communicate with us outside of the office visit, but at what price? What is it going to take for us to start communicating as a health care team?

According to epill.com, the average adherence rate for medicines taken once daily is nearly 80 percent, compared to about 50 percent for treatments that must be taken four times a day. As many as 75 percent of patients (and 50 percent of chronically ill patients) fail to adhere to physician-prescribed treatment regimens.

Full court press or one-on-one?

According to the National Council on Patient Information and Education, medication compliance is America’s “other drug problem,” and it is going to take efforts at every level to realize lasting improvements. Every member of the health care team has a stake in this game and everyone is at least talking about it. The American Medical Association (AMA) has position papers, CDC offers numerous articles and recommendations, almost every patient and provider organization references the problem and even Wikipedia has a nice online synopsis of medication compliance. There is no doubt that it will take a change in the way our health care system operates to make significant progress in the way patients take their medications, but the first step in this crucial

battle is patient-physician communication. Both parties taking the time to agree on informed and realistic expectations will be time very well spent. Physicians giving their patients real and concrete explanations of the prescribed medication so that there are values associated with compliance is critical. Patients engaging in an honest relationship with their physician, listening to advice and demanding more when appropriate is absolutely necessary. We are wasting precious health care dollars here

and it threatens our lives! So, take a look at how you are treating yourself and next time you are at your physician’s office, ask this question: “Are we doing everything we can do to maximize the benefits of the medications that have been prescribed?”

We want to hear from you Was this article informative? magazine@caringvoice.org

Educate Yourself Before You Medicate

Ten questions from Consumer Health Information Corporation to ask yourself before starting a new medication

If you do not know the answers to these questions, be sure to ask your doctor or pharmacist BEFORE you start taking the medicine.

1. What is this drug used for? How is it going to help me? 2. What is the brand name? The generic name? 3. How should I take this drug? For how long? 4. When should I take it?

5. What side effects may occur? How do I recognize these side effects? What do I do if they occur?

6. What does this drug interact with? What drugs, supplement, herbals, food, drink, activities should I avoid – and when? 7. How long does it take for this drug to work? How will I know that it is working? 8. What should I do when I miss a dose? What if I overdose?

9. Are there any precautions I should take when I am on this drug? 10. How should I store this drug?

From left: CVC’s Ami Vega, Tinesha Davis, Sarah Thaniel, Kim Fuhrman, Darryl Turner, Amy Jackson, Bonnie Rigsby

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hen it comes to eating, Americans know how to load up on foods that are high in calories, sugar and sodium. However, when it comes to getting the recommended five to nine servings of fruits and vegetables daily, we still fall short. Studies show that what a person eats influences not only his or her health, but also how that person feels, thinks, and even what he or she craves. If you want to feel better, think better and eat better, take a look at your current eating habits. The key to eating for a healthy body and mind is not found in any one food or nutrient, but rather in a combination of good eating

by metabolism. Too much sugar will cause you to feel drowsy in a couple hours. Studies show that eating too much protein at breakfast leads to overeating at lunch. ENJOY up to 300 mg of caffeine early in the day. This is equivalent to three cups of brewed coffee or six cups of tea. Avoid caffeinated beverages after 1 p.m. Caffeine lingers in the body for hours and can affect your sleep if you drink too much or drink it too late in the day. EAT more foods rich in omega-3 fatty acids like salmon, tuna, walnuts, flaxseeds and canola oil. Diets high in omega-3s have been linked with reduced rates of depression

Changing the way you eat may not be easy, but the rewards for your body and mind will make it well worth your efforts. habits and healthy food choices. Here are some eating strategies to help you feel your best. CHOOSE minimally processed carbohydrate-rich foods like whole grains, fruits, vegetables and beans. To keep blood sugar levels in check, always balance carbohydrate-rich foods with some protein and a little fat. Don’t overload on sugar and refined carbohydrates or eat a high sugar snack by itself. Eating too many of these types of carbohydrates causes unfavorable blood sugar changes that lead to cravings for more carbohydrates. These foods can also leave you feeling tired, grouchy and irritable. EAT a healthy breakfast daily. A healthy breakfast is one that contains fiber, protein and some fruit. Don’t skip breakfast or overload on sugar or protein at breakfast. Skipping breakfast leads to carbohydrate cravings later in the day and slows your

and improved mental skills. Don’t load up on foods high in saturated fat and trans fat. These fats weigh you down and increase your risk of heart disease. AIM to get 25-35 grams of fiber daily by eating plenty of whole grains, fruits, vegetables, legumes, nuts and seeds. Studies show that fiber helps balance estrogen swells that can lead to food cravings, especially cravings for creamy foods that are high in fat. Don’t eat a lot of low fiber, carbohydrate rich foods like sugar and refined flours. These types of foods cause unfavorable blood sugar levels and insulin levels that can increase cravings. DRINK plenty of hydrating fluids like water, decaffeinated beverages and non-alcoholic drinks. Water helps cleanse your body from toxins that contribute to fatigue. Being properly hydrated also helps reduce food cravings. Avoid high calorie beverages that are loaded with sugar and

Sources: Somer MA, RA, Elizabeth. Food & Mood: The Complete Guide to Eating Well and Feeling Your Best, 2nd Edition. CDC. Sodium Intake Among Adults- United States, 2005-2006. MMWR 2010; 59: 746-749

Pam Speich, RD

caffeine, and limit alcoholic beverages to five drinks or fewer per week. Studies show that eliminating sugar and caffeine from the diet helps improve feelings of depression. Alcohol dehydrates cells and suppresses the nervous system, causing poor attention, the inability to concentrate and feelings of fatigue. Alcohol also interferes with a good night’s sleep and depletes omega-3s in nerve tissue. EXERCISE daily for 30-60 minutes. Exercise stimulates the nervous system to produce chemicals called endorphins that elevate mood and produce feelings of wellbeing. Regular exercise also relieves stress, burns calories and improves health. Don’t be sedentary. A sedentary lifestyle slows metabolism and increases the risk of many diseases including obesity, heart disease, diabetes and osteoporosis. SLEEP for seven-eight hours daily. Sleep renews the body. For better sleep, limit caffeine to earlier in the day, eat a light snack and take a warm bath or shower before going to bed. Don’t become sleep deprived! Studies show that as lack of sleep increases, mental performance decreases. Changing the way you eat may not be easy, but the rewards for your body and mind will make it well worth your efforts.

Pam Speich, RD began her career as a clinical dietitian at Vanderbilt University Medical Center. Her experience includes public speaking and media interviews, wellness program development, and nutrition counseling.

United States Department of Agriculture. Sugar and Sweeteners Outlook, Accessed November, 10, 2011 Harvard School of Public Health. Vegetables and Fruits: Get Plenty Everyday, Acessed November 10, 2011

The L O N G and the Short

of It

Overcoming Financial Stress in the Face of Chronic Illness by Rebecca App

Rebecca App is a Virginia CPA with experience in both public practice and the nonprofit industry. She has served as Director of Finance for CVC since May 2005.

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Spring 2012

f you were to ask your family and friends, I believe everyone would say they have at least one, if not several, financial goals. I would also expect that some have implemented a monthly budget to assist in meeting their goals. Short-term goals may include paying off outstanding credit card debt, saving for a new car or saving for an upcoming vacation. Long-term goals may be to purchase a home, plan for the birth of a child, save for college tuition or retirement. However, would anyone respond that their goal is to save and plan just in case they are diagnosed with a chronic disease?

Facing

the

Pain

Our financial plans and goals are normally optimistic in nature. A new home, a new car, or an annual vacation are the fun, rewarding purchases we look forward to. No one plans for the diagnosis of a chronic disease, and facing the unexpected news brings extreme stress over all aspects of life, including your financial future, plans and goals. What happens to your financial plan when you or a family member is suddenly diagnosed with a chronic illness? At some point, after the initial shock, there will soon be the question of, How am I going to pay for my medical bills?

How will I pay for the medication? How will my family make it through financially? Recently, my husband and I were challenged with such a crisis and, fortunately, were able to come up with several strategies to make life a little less stressful and a little more affordable in the face of chronic illness. On a beautiful spring day a few years ago, my husband and I found out we were expecting twins. After our ultrasound 20 weeks in, we were overjoyed to discover that baby one was a girl and baby two was a boy. However, as soon as they were born, the smaller twin, Max, was diagnosed with chronic kidney disease due to complications in utero. Happily today, the twins are both lively, active three year olds with a (surprise) younger brother. Not only did the addition of twins (and then a third baby) immediately change our financial plans and goals, but we also faced the reality and stress of paying for hospital visits, specialists, multiple prescription medications and ongoing lab costs for Max. All patients with a chronic illness and their family members understand these same concerns. In our current economy with the uncertainty of health care reform laws, annual premium increases, rising deductibles and multiple copayment costs, gaining knowledge about your insurance benefits, your disease and therapy options, and the programs available to you is extremely important.

Setting Goals

The first goal my husband and I set for all our children was to make sure they were immediately covered by a group health insurance plan. Luckily, both my husband and I could look at options through each of our employerâ&#x20AC;&#x2122;s plans to decide on the best coverage for the children at the most affordable cost for our family. Obtaining and maintaining an affordable health insurance plan is critical when diagnosed with a chronic illness. I know what my out of pocket costs are going to be for my son under our health benefits and I can plan for those costs. If you are lucky enough to have a decent group plan when you are diagnosed, attempt to keep that plan as long as possible. Once insurance coverage is lost, those with a chronic disease face a very 2 difficult task in obtaining new, affordable coverage. If the option is available to elect COBRA, it is important to know all of the laws and obtain coverage

before the enrollment period has expired. If you cannot afford COBRA, do as much research as possible for another plan or possibly seek premium assistance. Patient assistance programs, like Caring Voice Coalition, are available to patients and may be able to assist with the cost of health or COBRA premiums.

Planning Ahead

Max stayed in the NICU for several weeks and had major surgery when he was only 11 days old. In addition to the costs associated with labor and delivery, our family was also faced with tremendous hospital bills for his care. Because we planned in advance, we managed to have some savings to help with the hospital costs. The other planning that went into our pregnancy was to educate ourselves on our insurance benefits and out of pocket responsibilities associated with pre-natal care, labor and delivery. When the medical bills started to arrive, we were very prepared and knowledgeable on our deductible and max out-of-pocket responsibility. If we didn’t understand a charge, lab cost or service, we

were lucky to have a good prescription plan under our health insurance benefits to cover many of the medications. On one visit to his doctor we found out that due to his kidney limitations, Max would not be able to drink regular milk. The doctor gave us the name of a special “by prescription only” milk supplement that would help support his kidney function. At the same time, she also recommended that we call a local notfor-profit group that assists with the cost of special medical items for children. The organization has been a fantastic support for our family; not only covering the cost of the milk but also delivering it to our home once per month.

Living Through It

When Max was roughly 18 months old, he was prescribed a very expensive, daily injectable medication and the out-ofpocket cost was going to put a huge strain on our monthly budget. Because we asked his physicians a lot of questions and did our research, we found out about a patient assistance program available to assist with the copay costs. Ask questions of the

No one plans for the diagnosis of a chronic disease, and facing the unexpected news brings extreme stress over all aspects of life, including your financial future, plans and goals. questioned the invoice. If you are paying doctor’s claims or hospital bills and do not understand the charges, call and question your medical providers and your insurance company. Knowing your max out-of-pocket responsibility and the amount paid to date is critical information when faced with major health expenses. I was also able to negotiate payment terms with our hospital. In most cases, patients can negotiate the invoice amount and payment terms with their hospital. Many times, if payment is received within a certain time period, the hospital will discount the invoice by 10 percent or more. Hospitals are also very willing to negotiate monthly payment arrangements. At the time, we knew what we could afford per month out of our budget and the hospital was very willing to allow us to pay our outstanding balance over the course of 12 months, interest free. Eventually, when we found out the various medications my son would need on a daily and ongoing basis, there was definitely some initial fear over how our budget would handle the costs. Again, we

physicians, nurses, support groups, patient advocacy organizations and manufacturers, do internet or library research and educate yourself on your disease and therapy options. There are many copay assistance programs available through both manufacturers and non-profit organizations, like Caring Voice, that have been specifically established to

3 reduce the financial burden on patients and families. By definition, a chronic disease will persist for a long time and will not simply disappear. They cannot be prevented with vaccination or cured by medication. Therapies may reduce or eliminate symptoms of the disease but will not provide a cure. Like many others, our family will continue to face financial expenses associated with our son’s major medical costs and prescription therapies for years to come. However, I have made a critical decision to focus on the positive and live life by counting my blessings every day. I have three beautiful children and a supportive husband. I also have a great career at Caring Voice that allows me to serve patients by providing them financial assistance and support so they may also focus on the positive and get back to life.

1Rebecca playing with Max 2Max 3Max and his sister Katie 4Max and

Katie ride ahead as Rebecca and her husband, Eric, push their youngest son, Henry, photos by Taylor Scott

PP (Mar/Apr) 2-21-12:Layout 1

2/21/12

11:29 AM

very year, millions of Americans resolve that they will get back in shape once the New Year takes hold. I usually put these notions aside and tell myself that I’ll start working out again when I feel like working out again, but this year was different. For whatever reason, I had a newly found urge to get in shape, but at the risk of being a cliché (you know, signing up for a gym membership on Jan. 3, going hard for three weeks, then embarrassingly walking into the gym in mid-April Product to Better Manage Oxygen to finally cancel the membership A seutilized in months), I deI haven’t cided to do things a little different. I’ve always been in good shape, and I’ve always had an abnormally high level of energy, but, again, for reasons unbeknownst to me, I wanted 2012 to reflect, in part, how I had taken better care of myself. Here are a few tips that have rejuvenated my love of exercise (which, for the record, I did not think was possible).

Page 12

in a row, and I never hit the same muscle group in consecutive days. And on the days I stay away from the gym, I get my physical activity doing something fun outdoors. Get a Partner It’s funny, I started going to the gym largely due to the influence of a good friend of mine. For the first few weeks of our work-

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Start Whenever By now, it’s April, and if you still haven’t cashed in on your New Year’s resolution of getting back in shape, then no matter? Don’t bulk in regret, simply start now. Mix It Up I find going to the gym to be extremely monotonous. Running on a treadmill is, arguably, the dullest physical exercise I can assume for myself. So I mix it up. Because of the gym I belong to, I am able to use many different locations within a 10 miles radius of where I live, so I typically use three different gyms a week, just as a change of pace. I never do the same cardio workout two days

two major factors to my consistently high level of energy are that I rarely consume caffeine and I always sleep a little less than I need to. Sleeping too little makes me feel almost as lethargic as sleeping too much, and using caffeine to offset the fatigue only enhances insomnia. I’m speaking personally, of course, but try limiting your caffeine; it surely can’t hurt.

by Alex Withrow ing out together, he was the one who had to drag me to the gym. Now I find myself begging him to tag along with me. Find someone who will support your efforts, and who you can support in return. Less Caffeine, More Sleep I know, I know, same old song, but the

More Water you’re (hopefully) limiting your CPAPSince at Home! caffeine, try drinking more water. Now, I find water to be as uninteresting as running on a treadmill, but I have a solution for you. At the risk of sounding like an advertorial, I recently discovered MiO liquid water enhancer, which has acted as a Godsend in my new fitness regime. One or two small squirts from the $3.50 bottle into a full cup of water, and your water tastes completely different. According to the bottle’s nutrition facts, one serving of MiO contains no calories, sodium, fat, carbs or sugar. In short, it makes water worth it. Don’t Get Frustrated So you haven’t started going to the gym yet, so you haven’t worked out in two weeks, so you can’t find the time, so you aren’t seeing the results you wanted quickly enough. I get it – it’s frustrating. But, as Jane Brandenstein points out in her article on the next page, it’s better to do something rather than nothing. Any physical activity outside of your normal routine is a good thing. Start small, start slow. Pace yourself. The results will take hold without you even noticing. But believe me, they will be there.

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The Importance of Physical Activity

ith all of the emphasis on people being physically active, some questions are bound to be raised. In this article, I’m going to try and answer some of those questions and help you get on track. By helping you set some reasonable and attainable goals for yourself, you’ll find that staying physically active may not be as difficult as you anticipated. What is physical activity (PA)? Truthfully, we used to say “exercise,” but that word has developed a bad reputation. People’s thoughts about exercise are different, but many equate it to going to a gym in shorts and a tee shirt with a towel to gather the perspiration, and are immediately turned away. PA is any body movement that works your muscles and uses more energy than you use when resting. All of the activity you do in a day is good for you. According to The Centers for Disease Control (CDC),

physical inactivity increases one’s risk for dying prematurely, dying of heart disease, and developing diabetes, colon cancer, and high blood pressure. This is NOT good. What are the goals for PA? The CDC has set some guidelines for adults. These are two and half hours of moderate-intensity aerobic activity (i.e., brisk walking) every week and muscle-strengthening activities on two or more days a week that work all major muscle groups (legs, hips, back, abdomen, chest, shoulders, and arms). This comes out to roughly 30 minutes per day, five days a week plus the strengthening. Remember, this is a goal, if you are not there now, don’t worry. I suggest you start slow and increase slowly. If you can walk, just begin by walking a bit more. If you cannot walk, march in your chair for a while until you are stronger. PA is cumulative, meaning you could work for 10 minutes, three different times during the day and it all adds up. Of course the goal is to do 30

by Jane

Brandenstein

minutes at a time, but it’s okay to work up to that goal. Choose an activity that you want to do. Find a buddy to work with. It is more likely that you not only exercise, but also continue to exercise if you’re receiving encouragement from a workout partner. Do your activity at the time of day when you feel best. Set a schedule if possible and don’t let anything interfere. Put your schedule on the calendar, and check it off when you’re complete. Enjoy the feeling of completing the task. Don’t put physical activity off, start with something TODAY! Good luck to you. Jane Brandenstein has been a licensed physical therapist for more than 40 years. She currently resides north of Pittsburgh.

According to Yoga Journal, roughly 15.8 million people currently practice yoga

The Binding Discipline of Yoga by Karen Levitt, e-RYT

he word Yoga means “to bind.” Yoga is a 5,000-year-old discipline, handed down from the sages, and consists of specific methods designed to develop an individual physically, spiritually, emotionally and intellectually. Yoga is a journey – a way of looking at our life, our actions, our thoughts and those around us. A simple, yet well rounded practice includes, Hatha – the physical practice of yoga, Yoga Nidra – deep relaxation, and Pranayama – yogic breathing. These practices combine to bring about full and harmonious development of an individual. Yoga provides numerous benefits for the mind as well as the physical body. Through

a yoga practice, our mood improves; along with our sense of well-being, awareness deepens. We often become more accepting of ourselves and those around us. A consistent yoga practice helps with focus and concentration. It can relieve stress, improve alertness, and can also help one’s self esteem. Sleep improves and one can learn how to deal with anxiety. Physiological benefits of yoga include lowered respiratory rate, improved cardiovascular functions, lowered blood pressure, increased flexibility, muscle strength, better coordination and range of motion. An individual’s energy level can greatly increase as well. In addition, there are biochemical benefits that bring desired results to our bodies. Cortisol levels decrease as antioxidant factors dissipate throughout the bloodstream, bringing a sense of calm and

increasing our resistance to disease. Glucose, sodium, cholesterol and triglyceride levels are reduced, while levels of vitamin C, and hemoglobin levels rise. There are continuing studies in the scientific community which document the improvement through which people suffering from a variety of ailments, including, asthma, diabetes, arthritis, or even obesity are greatly helped by a yoga practice. From the subtle to the physical, yoga can put you on the path to true healing. Certified through Integral Yoga in 1999, Karen Levitt found the training to be transformational and continues to share the many benefits of yoga in the Richmond community. Her website is: www.dharmaclothingandyoga.com.

Pictured: CVC’s Rachel Kelly

Health Care Reform: A Timeline How and When Will This Law Affect You? by Terri Seargent

s I comb over the pages and pages of the Health Care Reform Bill in preparation for this article, I can’t help but feel overwhelmed, just like most Americans. It is by far one of the greatest federal government undertakings in our short 235 years and affects EVERY American. There is much political debate about the law – its cost and its benefits. But one thing is for sure, the law has already begun to change the landscape of health care across the country. While you take note of the timeline on this page, you will see many parts of the law that indirectly affect us, such as cost-saving measures, streamlining of information, dollars being used for community wellness programs, grants given to increase the number of health care professionals, and much more, all to increase and broaden health care while using cost saving measures. This article will focus on the direct impact that the law has already provided us.

• Understand and fight health disparities all federal health care programs must collect racial, ethnic and language data to help identify and reduce disparities

2012

PRE-EXISTING CONDITION INSURANCE PROGRAM: A temporary, national high-risk pool to provide health coverage to people with pre-existing medical conditions who have been uninsured for six months. This measure is designed to bridge the gap until the implementation of other coverage provisions in the law that will take effect in January 2014. Many states, 23 total, have opted into the federal plan. The remaining states continue with a state-run plan. Outcome: In several states this is the first opportunity for people with chronic illnesses to obtain health insurance coverage, but you must be without any insurance for six months. Many states previously had a high-risk program that does not require a person to be without insurance for six months. Some states are running both a state program and the federal program,

giving a broader access to coverage. Many of the states have chosen to change their plans to mirror the federal government plan in the way of cost and coverage while not requiring the six months without coverage. To obtain specific state information log onto www.health care.gov. A TEMPORARY RETIREE COVERAGE REINSURANCE PROGRAM: Grants federal money to employers to help offset the cost of keeping early retirees on their group health plan. Employers have to request the grant and at this time, only a limited amount of employers have done so. But if you are looking into retiring early, you should check with your employer to see if they will continue your health benefits until age 65. Starting in 2014, early retirees January-

• Improved preventative coverage - new funding for state Medicaid programs

• Establishing affordable insurance exchanges - employees can buy insurance from Affordable Insurance Exchange if not offered by employer

• Increase in Medicaid payments for primary care doctors - states must pay no less than 100% of Medicare rates in 2013 & 2014

2013 - October

• Reduce paperwork/administrative costs - electronic records • Link payment to quality outcomes - incentive for hospitals to improve care

CARE

Currently in effect

January-

March -

H E A LT H

Terri Seargent has acted as an advocate for genetic antidiscrimination for several years. Her advocacy focuses on insurance education, the legal implications of genetic testing, and laws that protect the rights of the chronically ill.

- October

• Additional funding for Children’s Health Insurance Program (CHIP) - states will receive two years of funding to continue covering children not covered by Medicaid

• Promoting individual responsibility - most individuals will be required to obtain basic coverage or pay a fee to help offset the costs of care for uninsured Americans • Ensuring free choice employees who meet the requirements and cannot afford employer plan can purchase a more affordable plan

2014

CONSUMER PROTECTIONS: Stops insurance companies from limiting the care you need. Outcome: There is no longer a lifetime limit on insurance benefits. • Children under 19 cannot be denied coverage for a pre-existing condition. • No longer is a referral needed to go to an OB-GYN. • Hospital emergency treatment no longer needs prior approval when outside a plan’s network. COVERAGE OF PREVENTATIVE BENEFITS: Requires new health plans to provide certain preventative services without any deductible or copayment. Outcome: The following is a list of the major preventative services being covered at no charge. • Children (0-17): regular pediatrician visits, vision and hearing screening, developmental assessments, immunizations, and screening and counseling to address obesity and help children maintain a healthy weight. • Women (18-64): cancer screening such as pap smears starting at age 21, mammograms at age 50, HPV vaccination for women ages 19 to 26. Starting in August 2012, screening for gestational diabetes and contraception, will be covered by new health plans with no cost sharing. • Women and Men (18-64):

recommended immunizations such as, flu shots for all adults, and meningococcal and pneumococcal vaccinations for high-risk adults; healthy diet counseling and obesity screening; cholesterol and blood pressure screening; screening for sexually-transmitted infections and HIV; depression screening; and tobacco-use counseling CLOSING MEDICARE DRUG COVERAGE GAP: The phase in program requiring pharmaceutical manufacturers to provide a 50 percent discount on brand name drugs filled in the Medicare Part D coverage gap beginning in 2011 working towards reducing coinsurance to 25 percent in 2020. The federal government will phase in subsidies for generic prescriptions filled under part D. Outcome: During the “donut hole” of Part D where the insured pays 100 percent for their prescriptions, they will now receive a 50 percent discount on their drugs. That 100 percent will be lowered to 25 percent by 2020 while maintaining the 50 percent discount making the donut hole much more affordable for Medicare Part D recipients. MEDICARE PREVENTION BENEFITS: Eliminates Co-insurance for preventative services under Medicare. Outcome: The benefits are similar to those listed above for women and men. With the addition of yearly wellness visits, bone mass measurement, diabetes screening, PSA test for men. There will be no deductible or coinsurance payments for these services. You can log onto Medicare’s website at www. medicare.gov to view the entire preventative program.

CO$T

940 Billion

over

years

will be able to purchase affordable health insurance through state-based health insurance exchanges. Outcome: Potential opportunity to retire early while maintaining affordable health care coverage.

UNIFORM COVERAGE SUMMARIES FOR CONSUMERS: Both group and individual health plans are required to provide a uniform summary of benefits and coverage. All health plans must begin to provide this by September 23, 2012. Outcome: This simplified federal template summary which is the same for all companies will allow the consumer to better understand their health coverage and easily compare health plans.

Visit healthreform.kff.org to view a succinct, informative video about how the health care reform act may affect your health insurance coverage.

• Increased access to Medicaid - Americans who earned less than 133% of the poverty level will be eligible to enroll in Medicaid • Ensuring coverage for individuals who participate in clinical trials - insurers will be prohibited from dropping or limiting coverage because an individual chooses to participate in a clinical trial

• Eliminating annual limits on insurance coverage - prohibits new plans and existing group plans from imposing annual dollar limits on the amount of coverage an individual may receive • No discrimination for pre-existing conditions or gender - insurance companies cannot refuse to sell, cover or renew policies because of an individual’s pre-existing conditions, or charge higher rates due to gender

January-

• Paying physicians based on value not volume - physician payments will be modified so that those who provide higher value care will receive higher payments than those who provide lower quality care.

2015 31

How do I manage everything? This is one of the first questions family caregivers ask themselves. Of course we have email, calendars and filing systems to help, but all of these systems are separate and something else we have to manage.

But what if there was a system that could help you manage the care of your loved one and that integrated with the systems you already use?

This is Family Ties.

With Family Ties you can:

Schedule caregiving activities. Store private documents.

Share the care.

Update loved ones.

all in one place

Hereâ&#x20AC;&#x2122;s how it works: Create a Care Team Assign tasks to individual team members or to the entire team. Team members will be alerted of their assigned tasks with an email and can add the item to their Google calendar with one click.

Update the team. Care Teams have access to a Care Team comment wall, where members can make comments, ask questions and provide status updates.

You can create as many Care Teams as you need. Only members assigned to the individual team will have access to the team, or will even know that it exists. For example, Jim, Tabitha and Jackson have full access to the Update Team, but only Jim and Tabitha can see the Financial Team or access itâ&#x20AC;&#x2122;s activities, comments or documents.

Share the care.

Store private documents. Documents can be stored safely, securely and easily.

Medical Team

Update Team Jim

Tabitha

Jackson

Finance Team

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Courtesy of Lift Caregiving, these items are perfect for patients with diseases and the people who care for them. All items listed (and more) can be found on liftcaregiving.com

MocSocks $22.00

The MocSocks cradle your feet and ankles in warmth and comfort. Wear them in bed, around the house, or even to out to clinic appointments; the textured sole provides extra protection against slips and falls. Machine washable. Available in black, french blue, plum and red.

Weighted Soup Spoon $10.95 Contoured handle is weighted for stability. Easy to grasp and shaped to fit the fingers, these utensils have 8 oz. (227 g) of additional weights.

CaliBowl La Jolla Stack $29.99

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As food is scooped up the side of the CaliBowl, the curved lip around the bowlâ&#x20AC;&#x2122;s top edge causes a gradual wave-like effect, sending the food back onto the utensil, instead of over the edge. Ideal for people who suffer from the effects of conditions like muscular dystrophy or Huntingtonâ&#x20AC;&#x2122;s Disease. The La Jolla Stack is a set of four 3-cup (0.71 liter) Plastic Soup/Cereal Bowls. Bowls can be stacked to save valuable storage space. Available in white, red, green and blue.

$9.95 These stackable, polycarbonate mugs feature deep grooves that fit comfortably in the hand and resist slipping. Suitable for both hot and cold liquids. Holds 7 fl. oz. (207 ml). Mug is household dishwasher and microwave safe. Colors may vary.

Interested in having your items featured in Caring Voice Community? E-mail magazine@caringvoice.org for more details.

All items available on LiftCaregiving.com

BREAKING DOWN SOCIAL SECURITY DISABILITY Part 1: The Overview

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.

any persons impacted by a chronic illness reach a point where they can no longer work. To help allow for continued income and insurance, individuals can apply for disability from the Social Security Administration (SSA). Unfortunately, the Social Security Disability process can be complicated, long and frustrating, especially if you suffer from a chronic illness. These cases are often most challenging due to the nature of the disability and the lack of understanding by others. SSA’s definition of disability is set up to take care of those with a fixed, unchanging disability, such as blindness and those with serious disabilities, such as quadriplegia. Those with chronic illnesses are disabled, yet it is not static. Some days they can work, while others they cannot, and there is no way to predict when they will be healthy or sick. Chronic illness is a disability that often prevents one from working, performing activities of daily living and socializing, albeit not one that is unchanging. However, by understanding the rulings and guidelines set forth by SSA and presenting a strong evidenced based claim, you can obtain a favorable decision. There are two ways to receive disability from Social Security -- Social Security Disability Income (SSDI), for which the number of work quarters or credits needed to qualify will depend on your age at the time you become disabled. For example, younger individuals will require fewer work credits to qualify for disability; and Supplemental Security Income (SSI), which you can get

caringvoice.org

Spring 2012

even if you’ve never worked, but only if you have little or no income. There are people who haven’t worked in years, but who are above the poverty level income - who do not qualify for either, even if they are otherwise disabled. Usually, if you are denied SSDI because you don’t have enough work credits, or if you are denied SSI because you have too much income, rarely is this issue appealable. Most people, though, are denied because Social Security doesn’t agree that their illness is disabling. The disability criteria are the same for both SSDI and SSI. You have to be unable to perform work you previously did AND

by Miranda James would get under SSDI, but the value of Medicaid cannot be overstated; especially for individuals with chronic illnesses. Following a denial it is important that you appeal your decision rather than giving up and/or starting over. Social Security often pays retroactive benefits from the date they find you disabled to the date a decision is made on your claim. If you do not pursue your claim following a denial, you may lose some of that retroactive benefit, as well as delaying your Medicare effective date. Finally, the best advice I have to obtain a favorable decision at the earliest possible stage is to keep a diary that documents your

To help obtain a favorable decision, keep a diary that documents your medication lists, good days and bad days, and other medical events. cannot adjust to other work in the economy - think the most light duty, sedentary job you can imagine. It’s not enough that you are unable to keep working at the job you had when you became disabled; you have to be unable to perform ANY job. For a child, if their condition is not as medically serious as a listed condition, a child will be considered disabled if they suffer from severe limitations in their activities. In most states, if you get SSI, you are automatically eligible for Medicaid. If you get SSDI, you become eligible for Medicare 24-months after you begin receiving benefits. SSI typically pays a monthly amount that is less than what you

medication lists, good days and bad days and other medical events. This will help you gather your thoughts, be precise and detailed and remember all the information you want to convey. Additionally and most importantly, collect and submit medical documentation and supportive treating physician opinions to SSA. This will help present a strong, well supported claim and allow your best chance for a favorable decision.

Next Quarter: The importance of maintaining a health diary

Understanding your

Disability

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

In Their

Words

stories from our patients

From left: Nellie Capehart, Sonia Hemphill, Heather Pavey, Jennifer Previtera, Mickie McGuill

The First Voice You Hear Department Spotlight: Communications by Nellie Capehart n a world filled with automated prompts, Caring Voice Coalition and its Communications Department stands second to none in providing our callers with direct assistance with one of our friendly professionals. The Communications Department is composed of a group of highly qualified individuals who are eager and ready to direct your call in the most efficient and effective way possible. Therefore, it is with utmost importance that we provide you with the service you expect and deserve. When calling CVC, our staff will direct you to the person or department that can best address your questions and concerns. Our bilingual staff is also available for Spanish-speaking callers who prefer to speak in their native language. For callers of other ethnicities, we will direct you to a Case Manager who will connect with a translator, thereby utilizing our Language Interpretation service. The Communications Department is a vital asset in assisting our Case Managers as well as our Insurance Education and Counseling Department in mailing patient information regarding grants, support group information and other materials, which may be related to your diagnosis. CVC currently supports nine diagnoses in which, upon request, we will mail relevant resources to help you understand your diagnoses to the fullest. Weâ&#x20AC;&#x2122;re the first voice you hear, and we make it our priority to put you in touch with the person that can take active measures in helping you with your illness.

by Mack McCarthy

My PH As I lay upon my pillow at peace like a baby lamb in no pain, my PH lays in wait like a Tigress waits for her prey. I stir; she twitches in anticipation. I wake; she strikes like a bolt of lightning and thunder at the same time. She tears at my lungs like nails down a chalkboard and roars out at me to say I am still here, you cannot escape my wrath. I stand and cringe, then, when done with my bathroom visit, I weigh myself and she slaps me so that I am dizzy and nearly falling over. I slowly go to the kitchen table as she takes my morning breath away. I sit, and with her still tearing at my lungs, I am nauseous from the pain. I eat to calm my stomach. I take my morning medication and she slowly releases her death grip on me as the medication takes effect. I pray I can make it through another day. She stays with me throughout the day like a cat playing with a mouse. The day is ended, it is time to rest. I take my sleeping pill and fall into a restful sleep as she waits, grumbling in her throat like a purring kitten waiting for another day. I am at sea within a horrendous storm; she is a doozy, her name is PH and she can be a violent one. Her waves toss me up and down like children on a seesaw on a playground. Suddenly I have been hit by a powerful wave; like the force of two locomotives colliding! I am forced overboard into her rough seas and under water and I struggle to get to the surface, my lungs have filled up with water. With great effort I make it to the surface; I fight to breathe, she has done her damage as the water overtakes my body like an invading army; I swell and continue to struggle to breath. Lord calm these seas I have been caught in and let me breathe.

Mack McCarthy was diagnosed with Pulmonary Hypertension in August 2004. He has been a patient of CVC since 2008. He resides in El Mirage, Arizona.

From left: CVCâ&#x20AC;&#x2122;s Jennifer Young, Tim Robertson, Matthew Pless, Jean Lua

the Community Crossword Questions: Across 7) This film won the Best Picture Academy Award this past February 8) Color of a zebra’s black stripes during their first six months of life 10) U.S. city that had the first professional baseball team 11) Every year, thousands of people enter a Washington Post contest using these to build a diorama 14) Virginia’s state flower 15) Number of days (spelled out) that Lent lasts for 16) Winner of the 2011 World Series 18) The largest of all birds 20) City where the 2012 Olympics will be held

Down 1) Rabbits are used to symbolize this at Easter 2) American’s consume roughly 16 million of these every Easter 3) Virginia’s state tree 4) Term for the day supposedly made up of 12 hours of daylight and 12 hours of darkness 5) This has more germs than your bathroom toilet 6) Approximate size of a baseball field 9) Approximate time for a rose to bloom after being planted 12) This holiday celebrates the patron saints of Ireland 13) 1908 was the first official year this maternal holiday was celebrated

Answers on page 39

17) March 20 represented the first day of what? 19) City where the U.S. won its first and only Olympic gold medal for baseball

Spring Forward Springtime is a symbol, of nature’s rebirth the blooming of flowers, from thawed bits of earth The season used to symbolize, that growth does occur and through the harsh winter, life will endure Like a leafless branch, its leaves we soon can see a gloomy piece of wood, once again a beautiful tree Or an iced over stream, that for months wouldn’t go now many quiet forests, musically hear it’s flow This is what’s most special, about this time of year it says that after difficult days, a renewal is here So just as this season, creates nature anew so shall we, Spring Forward too

by Amy Pearce Jackson

NEWSMAKER Dr. Paul Fairman, Pulmonologist Medical College of Virginia (MCV) Interview by Alex Withrow

Dr. Paul Fairman has been a pulmonologist at the Medical College of Virginia for more than 30 years. Caring Voice Community recently spoke with him about the misdiagnosis of Pulmonary Hypertension, patient advocacy, and insurance frustrations. How many Pulmonary Hypertension (PH) patients are initially misdiagnosed? I don’t know of any firm statistics. But I would guess that at least half of the PH population receives some diagnosis that is off the mark in some way. How long does it take to get PH accurately diagnosed? Once somebody thinks about the possibility of Pulmonary Hypertension, the diagnostic pathway is pretty clearly laid out. So then it’s just a matter of getting it ordered and accomplished. So from the point at which somebody says, “PH is a reasonable possibility, let’s move forward,” to having diagnosis established, is usually two weeks. What disease(s) are patients most commonly misdiagnosed with before they are diagnosed with PH? It depends on the age, but one possibility is that they are anxious – that what they are feeling stems from anxiety. Or that they are just getting older and maybe a little out of shape. The fact that people are misdiagnosed is not part of some conspiracy. It’s that doctors are considering common things to be common. So if a 50-60 year old patient has shortness of breath, you have a list in mind of possibilities. If they’re 30 years of age, a doctor may have a different list in mind. So for someone younger, a doctor might consider asthma as a possibility for diagnosis. It depends on the patient’s circumstances, but physicians misdiagnose the disease because they are considering something common to be common. How important is patient advocacy – a patient who does their homework and is familiar and knowledgeable about their disease? A patient who comes with a particular diagnosis in mind – who has done their homework and gives reasons as to why they have what they have, is something that I would consider very strongly. Whether or not I think they have that disease, their concern needs

to be addressed. If they are thinking about it, and they haven’t had certain tests done, then that is something we need to start thinking about together to either prove it yes or no. What is the role of a pulmonologist after diagnosis? If you’ve been labeled as PH, my first concern is, has this been done correctly? It’s a very significant diagnosis, medications are expensive, the prognosis is not rosy; there are a lot of reasons to make sure that we have the diagnosis confirmed. So I want to see the primary information that’s been done. I want to see the primary reports from doctors, the images from chest x-rays, the echocardiogram, whatever information has been done. And if it’s done well and the diagnosis is confirmed, then we’ll talk about the next step. What are the frustrations you have as a physician when an insurance company refuses to cover a drug you’re prescribing? Well, there is a frustration with having to justify the work all over again, or to address a list of criteria that have to be met, whether it fits the patient’s situation or not. Are there any frustrations in having PH initially misdiagnosed? Physicians all over the country, physicians of just about every stripe, are much much more aware of Pulmonary Hypertension than they were 10 years ago. The doctors who are aware will order echocardiograms, a great screening test for PH, which is good news. The frustration is, that’s where the evaluation stops for many patients. And that is not enough. There are lots of things that can make an echocardiogram look like PH that may be temporary or may be treated in totally different ways than all the new medications for Pulmonary Arterial Hypertension. Most of the public information about PH right now is about Pulmonary Arterial Hypertension - that specific category of PH. But there are other categories that are much more common that are treated in different ways. It’s important to make sure that the actual Pulmonary Hypertension is confirmed and that the evaluation decides which category the hypertension is in. That way the treatment can be applied appropriately.

by Alex Withrow

or people who depend on supplemental oxygen to live, traveling the world may not be considered a first priority. Enter Sea Puffers, a company that organizes trips that allow oxygen users to travel with the knowledge that their oxygen needs will be fully taken care of. Having acted as Editor of The Pulmonary Paper, a bi-monthly newsletter that connects people who have chronic lung disease, for many years, Celeste Belyea was constantly proposed the same dilemma from her dedicated readers. “People wanted to know how they could get out of their house,” Belyea said. “They have to have oxygen with them all day everyday, so how can they run an errand, let alone go on vacation without having to worry?” So in 2003, Belyea, herself a respiratory therapist and nurse, and travel agent, Pam Mackenzie, started Sea Puffers, which provides a unique and holistic method of traveling for patients who require supplementary oxygen. Today, Sea Puffers organizes four to five cruises a year for oxygen users and their family and friends. And because Sea

Puffers is equipped with a dedicated staff of clinicians and respiratory therapists, Belyea said, the oxygen users are able to feel secure for their well-being. “Everybody who travels with us gets a lot out of the experience,” Belyea said. “We just got back from taking a group on a Hawaiian cruise and a woman told me that she almost canceled her reservation the day before the trip because she was so scared that she was going to run out of oxygen. And by the end of the trip, she was in tears, just so thankful that she was able to go and not have to worry about a thing.” Belyea recommends that interested participants visit SeaPuffers.com to plan a cruise. “When we make cruise arrangements, we organize the plane, the hotel, the ship, the oxygen – we take care of it all,” Belyea said. “We get really good prices on the cruises, and we do not charge for making the oxygen arrangements.” To Belyea, peace of mind is what Sea Puffers aims to achieve. “People always have a really great time on the cruises,” she said. “And once they’re on a cruise together, they’re friends for life. Not just with us, but with each other.”

by Suzanne Flood

Marketing & Communications Manager, PHA

Every two years, the Pulmonary Hypertension Association (PHA) brings together the pulmonary hypertension community for its International PH Conference and Scientific Sessions. This Conference is the largest meeting of PH patients, family members and medical professionals in the world. PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World, will take place June 22-24, 2012, at the Renaissance Orlando at SeaWorld in Orlando.

This unique gathering will provide attendees with the opportunity to access the latest information about PH treatments, medications and research. More than 50 educational sessions, featuring more than 120 speakers – most of them medical professionals – will be presented over the course of three days. Attendees will also be able to mix, mingle and make new friends at the many networking opportunities available at the Conference. Whether it’s at the Patient and Family Meetand-Greet, Pre-Conference Meet-ups or at a Support Group Meeting, attendees will be able to connect with others living with PH every day.

Registration for the Conference is open. Attendees who register before April 2, will receive a $25 early-bird discount. So don’t delay – register today! Visit www.PHAssociation.org/Conference for more information about the Conference, or to register. If you would like a copy of the registration brochure mailed to you, please call PHA at 301-565-3004 x768.

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