Advocacy & Awareness - Community - Spring 2016 by Caring Voice Coalition

A DVO C AC Y & AWA R E N E S S

Sisters offer tips on pulmonary hypertension awareness and advocacy

Caregiving means advocating for your loved one and yourself

Raising awareness can be as simple as writing a guest blog

PLUS:

The benefits of drinking tea A glossary of health insurance terms Invisible illness: “But you don’t look sick”

What legacy will you leave? By taking the simple step of making a provision in your will or living trust today, you can create a legacy of giving that will have a tremendous impact on future generations who will need financial assistance and support for their chronic illnesses.

For information on how you can impact the future of Caring Voice Coalition and the patients it serves through a legacy commitment, please contact: Rebecca App, Director of Finance 888-267-1440 ext. 106 financedept@caringvoice.org Your donations are fully deductible for estate tax purposes.

| Contents |

4 Letter from the editor 5 Vice president’s letter 6 Reader comments

8 Close up A staff member, Lauren Patrizio, and board member, Bruce Packett, share what brought them to CVC.

10 Technology CVC highlights recent apps, devices and software developed with your health in mind.

12 Marketplace CVC Program Manager Lauren Ruiz compiles a list of important insurance terms to know as you navigate the health care system.

14 Patient association profile Steve Van Wormer, phaware co-founder, provides insight into the pulmonary hypertension awareness organization’s goals and mission.

Advocacy and awareness

28 In your words Vinny Guarini describes what it’s like to have narcolepsy at 11 years old.

20 Caregiving advocacy Advocacy is essential for caregivers. Consider these ideas for advocating for yourself—and for your loved one—while giving care.

22 Active awareness Find ways to bring more awareness to your or a loved one’s disease—and learn about the many benefits of awareness raising.

30 Legal corner In part one of a fourpart series on disability, CVC Patient Advocate Nora Ciancio answers frequently asked questions.

32 Health watch

24 Event planning Get some ideas for planning your own awareness event, including strategizing, marketing and organizing tips—as well as a link to CVC’s Pinterest board full of event ideas.

CVC Director of Medical Affairs Robert Mayfield wants more people to understand what it means to live with invisible or chronic illnesses.

34 At a glance

25 Be your own advocate

Learn a few facts about one of our supported diseases: CGD.

Terri Seargent offers advice on self-advocacy in a health care setting.

26 Advocacy in action

35 Healthy eating

Debbi Drell, with input from her sister, Alex Castro, who has pulmonary hypertension, talks about what it has meant to them to fight back through advocacy and awareness they’ve taken part in together.

CVC shares some tea basics, including brewing tips, health benefits and little known facts.

16 Rare disease spotlight A Gaucher disease specialist explains the diagnosis process. A patient shares her story.

Staff Publishers Pamela Harris pharris@caringvoice.org Samantha Green sgreen@caringvoice.org 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.

Publishing Editor Kelli Yoder 888.267.1440, ext. 149 magazine@caringvoice.org

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

Graphic Design Charlie O'Donnell 888.267.1440, ext. 130 codonnell@caringvoice.org

Please recycle this issue.

| Letter from the Editor |

A reason to be aware

n the fifth or sixth grade, I read an article in a magazine about a girl my age with a rare form of cancer whose courage in the face of a terrifying prognosis stopped my heart in its tracks. I stuffed my savings, all of $27, into an envelope and sent it off to the address included at the end of the article. I’ve since learned that emptying my savings for every noble cause I encounter is a sure path to bankruptcy. Unfortunately, there are too many people facing undeserved challenges. But for the few good causes I do zero in on, it’s the stories behind them that first catch my attention. When it comes to rare diseases, personal stories are important for much more than just raising money. Learning about the strategies for raising awareness found on pages 22-23, I realized how the simple act of sharing or reading a personal disease experience is essential to the education of both the undiagnosed and medical professionals—many of whom know very little about the thousands of rare diseases that impact one in 10 people around the world. Personal stories, like the one 11-year-old Vinny Guarini shares on page 28 about life with narcolepsy, are what connect us to each other and give us a reason to care about one another. But perhaps most importantly for those with rare diseases, personal stories are what make us hit “share” on social media or remember a random detail 15 years later when a friend or child experiences an odd symptom. Too many people with rare diseases end up diagnosing themselves, or living for years undiagnosed. Raising awareness can make the diagnosis process easier. On page 18, Tamara Isaacs Ciocci, talks about her 21-year-long road to a diagnosis for Gaucher disease. The impact of an early and accurate diagnosis can mean better medical care and access to a support community. The more stories are shared, the better chance there is that the right person will have the right information when they need it. And that’s true for caregivers and other advocates as well. Debbi Drell, who gives care to her sister who has pulmonary hypertension, describes just how much advocacy must go hand in hand with raising awareness, on page 26. And her sister, Alex, offers her own advice for patient and PH advocacy. The sisters are a great example of good communication. I’ve read many stories where folks miss out on important communication oppotunities because they don’t want to bother anyone else with the gritty details of their health. May the words on these pages encourage you to try something different. Raising awareness and advocating for yourself is an important piece of staying involved, making an impact and even just coping. And don’t forget, you can do this by sharing stories with us. Be in touch.

Kelli L. Yoder 4

caringvoice.org • Spring 2016 • Advocacy and awareness

| Letter from the Vice President |

Taking an active role

ithout a doubt, communication is vital to exceptional health care. Communication means asserting yourself if you have a problem with the care you are receiving, or if there is an issue you want to discuss with your doctor. When individuals take an active role in their own health, they have a better understanding of their illness and are given the chance to participate in decisions that are being made to improve their lives. Yet, many patients don’t speak up for themselves. Why? The things that will make you an active participant in advocating for your care are simple, but not easy for everyone to do. Do you follow doctors’ orders, or do you participate in shared medical decision making? The latter sounds better, but the environment of the exam room leaves many of us feeling less empowered. As a result, we often rely on the advice of our physicians as the sole answer to our health concerns. What are some ways to overcome this? Become knowledgeable and learn everything possible about your condition. If there is something you simply don’t understand or agree with, it is important to ask questions. Be prepared with questions or issues that you want to discuss during your visit, including options for care, available services and prescription refill requests. Because time with the doctor is limited, it helps to have questions or topics prepared in advance. On page 25, Terri Seargent speaks about various strategies for how to be your own best advocate including helpful tips on preparing for medical appointments. We hope this issue of Community will inspire you to become your own best advocate, as well as to share your story to raise awareness about chronic illness. An important part of learning to become an effective self-advocate is educating the people around you. Change from a passive patient to an active advocate for the benefit of your own health care today.

Samantha Green

READ COMMUNITY ONLINE Recent issues of Community are available to read online. Share with a friend at: caringvoice.org/media-center/cvc-magazine

Also find online-only features such as: • Recipes to pair with your tea. • Places to share your rare disease story. • Extended versions of “Be your own health care advocate” on page 25, and “The importance of advocacy” on page 26.

| Reader Comments |

How sharing your journey helped others I am always amazed with the consistent positive outlook and informative stories that are expressed in each publication of Community. It is really wonderful to learn about other rare disease states and about your organizational growth, which helps so many people. Pamela Carner Ohio

I can’t begin to tell you how much your organization and magazine have encouraged us in our journey with insterstitial lung disease. We thought we were alone with a rare disease that few people understood. Now we have hope. My husband has been fighting this little known condition for over two years with insurance, medical equipment and huge pharmaceutical challenges. We are spreading the word about your wonderful organization. We can’t thank you enough. Tom & Laurie McGuyre California

If you have any comments or questions about this issue, or would like to tell your own story, please write to us!

Email magazine@caringvoice.org

Mail: Caring Voice Coalition, Inc. 8249 Meadowbridge Rd Mechanicsville, VA 23116

I love the fact that all of [Community] seems personal and relevant to me. Sometimes explaining issues without getting too clinical helps me to also share with my family and friends to where they can understand. Jeri Maunu Nudell South Dakota

I hope the wonderful article about Sandra Rock’s experience with idiopathic pulmonary fibrosis [Community, Winter 2014] will help spread awareness for this rare disease. Sandra is definitely a superhero. This family has come together and continues to fight no matter what’s thrown at them. Sandra has been a huge voice and caring heart for the disease. As a mother of a child with another rare disease, Angelman syndrome, I want to thank Sandra for being such an advocate. Michelle Fingold California

CVC on the web: caringvoice.org

I Googled “Mets player with HD,” and saw a link to a Community article about a hockey player with Huntington’s disease [Spring 2014]. My husband and son both died from HD. My other son is in the beginning stage. My daughter also has the gene mutation but does not have symptoms yet. I only heard about Caring Voice Coalition a year ago, and they have been unbelievably helpful in getting disability assistance for my son. I couldn’t have done it without them. I never knew there was a magazine until I read the article on Google. Rose Marie Higgins New Jersey

caringvoice.org • Spring 2016 • Advocacy and awareness

to doing all you can. Want to find ways to get back some of the things you may have missed since your diagnosis? Living PAH can connect you to a growing community of support designed to help you get the most from your care. Visit LivingPAH.com today. You’ll find relevant information about your condition; healthy, low-sodium recipes in our Living PAH Kitchen; and tips from other patients and caregivers who have traveled a similar path. And if you choose to enroll, you’ll receive additional tools and resources, a set of low-sodium recipes, and a monthly newsletter with helpful lifestyle tips.

Yes. It’s time to pursue your goals.

| Close Up |

Lauren Patrizio, Esq.

Senior Patient Advocate

rowing up in the suburbs of Richmond, Va., legal inequality was not always apparent. But as a young adult, my educational pursuits expanded my awareness and desire to instill change in our justice system. I received my undergraduate degree from Virginia Tech in Blacksburg, and then moved to Bristol, R.I., where I obtained my Juris Doctor degree from Roger Williams University School of Law. I attended Roger Williams under a Public Interest Scholarship and, while enrolled, I participated in the Immigration Clinic, the Summer Stipend Program, and Alternative Spring Break—all experiences that built upon my passion to represent underrepresented communities. Although many law graduates end up practicing close to their alma mater, as they say, “Virginia is for Lovers,” and Richmond called me home. I absolutely adore this city. There is a small park not far from my house where I can watch the sun set over the skyline. It’s stunning, gorgeous and every other synonym for beautiful. That, in itself, is reason enough for me to stay. But even more importantly, I am fortunate enough to have found my dream job. Shortly after returning to Richmond, I joined the team at Caring Voice Coalition (CVC), which has been a gateway to expanding my skillset and continuing to do work that I love. Have you ever faced or researched attorneys’ fees? They can be quite high. It is not common in my field to be able to provide quality service to deserving individuals free of charge, but CVC provides me that opportunity. As Senior Patient Advocate, I support a team of three advocates dedicated to obtaining expedited disability approvals for those suffering from a CVC-supported disease. We walk our patients through the entire process—from preparing to file the initial application to the final appeal stage, a hearing before an Administrative Law Judge (ALJ). We work together to draft creative and persuasive arguments 8

caringvoice.org • Spring 2016 • Advocacy and awareness

and apply precision in application of federal regulations. I still get excited every time my phone rings and there’s a patient on the other end. It’s my favorite part of this job— getting to know each one of the individuals we serve. I am blown away on a daily basis by the strength and kindness of everyone I come in contact with at CVC—colleagues, patients and caregivers alike. Looking back on my two years at CVC, I recall one case that both challenged and inspired me. The first patient I ever represented at an ALJ hearing was incredibly skeptical of my credentials. When preparing her for her hearing, she said I “sounded young” over the phone and asked numerous questions about approval rates and prior achievements. While slightly caught off guard, I really appreciated this patient’s approach (and, in the end, we established a wonderful working relationship). I try to remind my patients every day that they should be their own best advocates.

“I still get excited every time my phone rings and there’s a patient on the other end.” You should interview your doctors, attorneys, physical therapists, insurance providers, etc., and you should be satisfied with the care and service they are providing. Try to understand how your health insurance works, don’t be afraid to ask questions, maintain your own records, review your medical bills for errors, and know when a second opinion is appropriate. And, if you need help navigating the Social Security Administration disability process—call us! We’d love to help.

| Close Up |

Bruce Packett Board of Directors

n my high school years, my grandfather—who was very much my intellectual mentor and champion in childhood—passed away as a result of complications related to pulmonary fibrosis. So, it was really personal for me when Caring Voice Coalition invited me to join its Board of Directors in the beginning of 2015. I felt honored and inspired by the incredible opportunity to work so closely with a team of people so dedicated to directly intervening in patients’ and caregivers’ lives.

From a certain vantage point, it seems almost accidental that I should find myself working in health education and health policy as a career. My educational background was (and continues to be) in the humanities, specifically English literature, music and philosophy. I started my working career writing press releases for a small public relations firm in Washington, D.C.

Currently, I work with the American Academy of HIV Medicine in Washington, D.C., where I direct the organization’s training and policy programs targeted at providers of HIV medical care. This work is very much a part of my perspective and understanding on public health. Unlike in the 1980s and early 1990s, patients with HIV are now expected to live just about as long as those who don’t have HIV, provided that they have access to quality care and treatment. We could even see the end of the epidemic if every patient with the disease were identified and successfully treated.

“... there are still holes in the health care system—holes that leave patients without access to care and treatment ...”

Lately, I continue to write whenever possible, consult with a developing post-secondary school, and copyedit My previous work with nonprofit health care organiza- a quarterly academic journal. I’m also a (very) part-time tions gave me the experience, and the on-the-ground under- musician. My wife and I are keen on traveling as much as standing of how patients with chronic diseases are affected we can manage; there’s so much to see in our short time here in their daily lives, to really grow and excel in my career in in the world. public health.

But there are still holes in the health care system—holes that leave patients without access to care and treatment. These holes are only addressed by specialty lifeline programs and organizations very much like Caring Voice Coalition. That is just part of the reason why I was excited by an opportunity to again engage with an organization that makes a direct difference in the lives of patients with diseases and conditions that are challenging in different ways than HIV.

For me, there is a very intentional connection between a philosophy/humanities education and developing a sense of justice and equality in the world, across all issues. This connection motivates my interest in health policy work, education and care focused on patients’ lives. I have a firm conviction that no one, especially the most vulnerable patients with chronic and difficult conditions and diseases, should lack access to quality health care and general well-being. I believe there is power in people coming together to share their stories, working side by side and helping one another navigate through life’s challenges. And I am so grateful to have the opportunity to be a part of an organization that does just that. 9

| Technology |

Living well with tech Devices, apps and connections for better health

ecent advances in technoloOnline communities allow people not only to connect with others who ungy are transforming the health care industry, but are also im- derstand what they are going through, but also to access first-hand informapacting individual and at-home care. tion regarding treatment. Many foNew devices can make healthrums and boards are set up to promote related tasks easier, or monitor things open communication, and those who like seizure or cardiac activity to help may feel alone can find encouragement in emergency situations. And software and a sense of belonging online. creators release new applications every day that can collect vitals, track steps, organize health information and guide you through daily health decisions. Check out some innovative ways tech-

Tech for you

Technology has also had a significant impact on peer-to-peer health sharing. Faced with a rare disease diagnosis, many people initially know next to nothing about their condition, and neither do their families. Most have never met anyone with the same diagnosis. Before social media, this left people isolated, with little or no access to others facing similar challenges. In the last decade or two, online communities and forums have broken down those geographic barriers by allowing people impacted by rare diseases to come together virtually—through Facebook groups, online networks and information-sharing forums—adding a little light to the journey of a rare disease diagnosis. 10

nology is helping people take a more active role in monitoring a variety of diagnoses:

and blood oxygen levels. Caregivers can also access the info remotely by installing an app on their device.

Activity tracking wristbands $28-$70

These small, plastic wristbands allow users to measure and set health goals by sending personalized data to smart devices. The wristbands track sleep patterns and count steps, with more complex devices measuring distance, speed and even long-term fitness goals.

Air quality monitor $110-$270

For many people with rare diseases, air quality can be the difference “Smart” pill bottles between a good or bad day. These $10-$40 devices can monitor the air quality in These wireless tech-equipped bottles your home. Newer devices can even send alerts to secure servers to help us- provide historical air quality readings, ers remember to take essential medica- revealing the user’s previous exposure tions. Most are integrated with your cell to tiny particles in the air. phone to call or send texts as reminders. The bottles change colors or beep if you Cardiac monitors $50-$2,300 fail to take your pill. Today’s wireless and remote cardiac Health sensor phone cases monitoring technology devices can $100-$200 be attached to a patient’s chest and Test your vitals on the go by putting record ECG, respiration rate, heart a case embedded with health sensors rate and activity level data. The devices on your phone. As you grip the phone, transmit the information to a physician the sensored case reads basic health or caregiver’s smart device in real time, information, such as lung functions, allowing them to respond to sudden heart rate, temperature, blood pressure needs more quickly.

caringvoice.org • Spring 2016 • Advocacy and awareness

| Technology |

Apps

Stabilizing utensils $200-$300

iTriage Health

Apple Health, Google Fit

Free

Symple

Healthy eating apps

Handles are embedded with motion This app allows users to search sympFree signals that can read movements of ustoms and find potential causes, then it Google and Apple health apps track ers with conditions that cause them to explains treatment options, suggestblood sugar, calories burned, steps, tremor. These signals trigger the haning nearby doctors and facilities, and heart rate and cholesterol, among many dle to move in an opposing direction to providing wait times when available. other features. Users can download It can estimate care costs, including smooth out the motion. lots of other fitness apps that integrate. insurance information in some cases.

Seizure trackers

$25-$200

People managing seizures can wear wristbands that connect with smart phone applications to alert a caregiver or loved one with location and other info during a medical event. Many apps record and time seizures, allowing users and caregivers to keep a record of triggers and other information.

$0 - $2.99

“Symple” tracks symptoms, exercise and medications. Photos can be included. The app tracks progress over time, creates graphs and reminds users when they forget to record. Users can export the information collected to pass along to a doctor or caregiver.

Free

Dozens of apps exist to help those with dietary restrictions or preferences make and find better eating choices. Try “HealthyOut” to search area restaurants by menu, or “ShopWell” to navigate healthier options while grocery shopping.

Get support. Meet new friends. Share your stories.

JOIN CARING VOICE COALITION’S SOCIAL COMMUNITY ON

| Marketplace |

Healthcare glossary A basic step you can take in the process of becoming your own advocate is to learn common healthcare terms.

Policy cost-sharing terms How cost is shared between you and your insurance company depends partly on whether the plan includes a deductible, copay or coinsurance. Other terms explain common variables that impact cost. Deductible In a health care plan with a deductible, you spend a set amount (the deductible) before your health coverage begins paying for any services. Until you reach this amount, you are responsible for 100 percent of the costs. Some services, like preventative care, may be excluded. Once you meet the deductible, the policy begins covering certain costs. Copay/Copayment Certain plans also have copays, where you pay a set amount for a covered prescription or service, no matter what, and the insurance company picks up the rest. This amount is determined by your specific insurance policy. Most copayments won’t begin until after the deductible is met. Coinsurance The coinsurance is a percentage-based amount you pay for a covered prescription or service once you’ve met your deductible. This amount is determined by the cost of the prescription or service you receive and continues until you hit your out-of-pocket maximum.

marketplace can’t have an OOP max higher than $6,850 for an individual in 2016.) Covered service Covered medical services are eligible for payment by your insurance policy based on the plan’s pre-established benefits. If a service is not covered, you will be responsible for 100 percent of the cost. Formulary A formulary is a list of prescription medications eligible for payment by your insurance policy based on the plan’s established benefits. If a medication is not on formulary, you will be responsible for 100 percent of the cost. In-network Physicians, medical facilities and pharmacies set up as approved participators with your insurance policy are said to be “in-network.” (These care providers have a contract with insurance companies that allow the insurance to negotiate lower costs on your behalf.) So if you use in-network participators, you should pay less for services, typically an amount pre-determined based on your benefits.

Out-of-pocket (OOP) maximum Every plan has an OOP max, or the most you will pay for covered prescriptions and services in a policy period. This Out-of-network number is generally slightly higher than your deductible to Physicians, medical facilities and pharmacies not included account for copay or coinsurance. Once you have paid this as approved participators with your insurance policy are amount in health expenses—not including premiums—your “out-of-network.” You will pay a higher share of cost, or pay insurance will pay 100 percent of covered services for the rest 100 percent for services received out-of-network, depending of the year. (Under the Affordable Care Act, plans on the on your plan network type. (See Insurance plan types.) 12

caringvoice.org • Spring 2016 • Advocacy and awareness

| Marketplace |

Insurance plan types These are the most common of the many plan types, categorized generally by how they are managed. They differ mostly in how restrictive they are as far as whether they require things like primary care physicians, referrals, pre-authorization for services, in-network care and filing claims or other paper work. MOST RESTRICTIVE

Health Maintenance Organization (HMO) HMO health policies attempt to keep costs low by establishing a strict network of approved participators. The policy typically requires a primary care physician (PCP) who manages all your health care needs, including referrals to specialist doctors. If you receive non-emergency services outside of this established network, you will pay 100 percent of the cost of services received. Exclusive Provider Organization (EPO) As with HMOs, EPOs establish a group of approved participators. However, members generally do not have to choose a PCP or obtain referrals to see specialists. You will still pay 100 percent for nonemergency services received outside of the established network. Point-of-Service (POS) POS plans combine elements of an HMO and a Preferred Provider Organization (PPO). You usually choose a PCP who manages your health care needs, including referrals to specialist doctors. But unlike an HMO, you can receive services outside of the established network. You will pay more, but not 100 percent, if the services are covered by your plan. Private-Fee-for-Service (PFFS) PFFS plans combine elements of an HMO and a PPO, and are typically specific to Medicare-affiliated coverage. Members choose a PCP for these plans, but referrals are not required to see a specialist doctor. Services outside of the established network will cost you more, but not 100 percent if covered by your plan.

LEAST RESTRICTIVE

Preferred Provider Organization (PPO) PPO plans provide the most flexibility to visit physicians, medical facilities and hospitals. You are not required to choose a PCP, no referrals to specialist doctors are needed, and you can visit any innetwork or out-of-network provider. You will generally pay a larger percentage of covered services received out-of-network.

Other terminology Health Savings Accounts (HSA) These tax-advantaged medical savings accounts are specifically for setting aside money to cover medical expenses. You can draw funds from the HSA to pay for out-of-pocket medical, prescription, dental and vision expenses incurred throughout the year. Certain plans allow them, others do not.

CVC Program Manager Lauren Ruiz helps patients understand and obtain health insurance coverage, assistance from federal and state health care programs, and financial aid for health insurance premiums. Ruiz graduated from Virginia Tech in Blacksburg with majors in political science, communication and English.

High Deductible Health Plan (HDHP) HDHPs are health insurance policies with a high-cost deductible responsibility. You typically pay 100 percent of services received until the deductible has been met. Generally, health insurance premiums are lower per month for HDHP plans, but members are responsible for more out-of-pocket costs. HDHPs are often paired with HSA options.

For more information on health insurance policies, please visit healthcare.gov.

| Patient Association Profile |

phaware global association by Steve Van Wormer President, Co-founder

What inspired you to help launch phaware? My son Lucas was born a happy and healthy child, but life changed when he turned 4. Lucas was misdiagnosed with asthma, so for months, doctors put him on nebulizers, but nothing seemed to help. Nine long months after the misdiagnosis, during an unrelated routine chest X-ray, his pediatrician recognized that he had a slightly enlarged heart. We were referred to a pediatric cardiologist, who gave my wife, Marina, and I the devastating news—our only child was diagnosed with idiopathic pulmonary hypertension (PH) a rare, life-threatening lung disease. We scheduled a meeting with a PH specialist at the UCLA medical center. But before the meeting, one night around 4 a.m., Lucas stumbled into our bedroom struggling and moaning. He had chest pain, he couldn’t breathe and his heart was pounding. He was rushed to UCLA in an ambulance to be stabilized. Thinking back to that time almost 10 years ago, I realize how lucky Lucas was. Only weeks earlier, combination therapy, a treatment plan where two or more therapies are combined, had come into play to treat pulmonary hypertension. That, coupled with his (relatively speaking) early diagnosis, has contributed to Lucas responding robustly to treatment. From day one of Lucas’ diagnosis we knew that if there is to be a cure for this rare, life-threatening lung disease, it needed to start with awareness—awareness of what PH is, whom it impacts and how to help.

What were some of the first things you did? We collaborated with talented graphic artists, editors and music designers to craft a series of impactful awareness 14

caringvoice.org • Spring 2016 • Advocacy and awareness

videos. Over the past few years, we had the videos aired across national networks, played literally a million times in taxi cab TVs, translated to over 50 languages and distributed to every global PH organization we could find on the planet. We even created a custom pediatric PH research video featuring Lucas and other PH kids that went from “rare to Times Square” when it graced the NASDAQ tower—the largest free-standing screen in the world.

How did that momentum turn into phaware? With each of these successes, more people reached out. We received emails from patients around the world responding to a #phaware tweet, notes from caregivers discovering us because they saw an ad on TV, and doctors downloading our mobile app. We realized our community was looking for new ways to connect. And so, phaware global association was born out of a simple hypothesis: If we capture a single patient … if we save one life … what will it be worth? A group of PH awareness activists got together to found phaware global association, a 501(c)3 organization. Our hypothesis has been proven repeatedly as phaware continues to discover diagnosed and undiagnosed patients, connect medical professionals, educate the general population, enlighten new investors and supporters, inform congressional leaders, and engage government and industry decision makers.

What are the goals of phaware currently? We aim to make reality the dream of a day when no PH patient goes undiagnosed or misdiagnosed. Our goal is to

reach, discover and engage patients and supporters across multiple platforms. This exposure allows us to tell patient stories in new ways, leveraging innovative technology to capture, engage and enable our audience, providing them with creative content focused on education, resources and knowledge. We believe this opportunity will impact the discourse of health care and disease prevention across the globe, bringing more people into the fold to help forge a new course to a cure.

How can readers get involved and help make PH history? We celebrate and honor the global PH community on Rare Disease Day (last day of February), World PH Day (May 5) and during PH Awareness Month (November). But we’ve also created a way for you to raise global awareness 365 days a year with our phaware365™ app. The app is available for free via Apple, Google Play or at www.phaware.global/apps. With it, you can: • Snap a selfie. • Decorate it with PH facts. • Add your own custom text. • Customize it with awareness stickers. • Connect during global awareness activities. • Share across social media and on phaware365’s Global Selfie Stream.

Each time you share your selfie on your social media, you raise awareness to your inner circle. Each time you share it to the phaware365 app, you raise awareness globally. Each and every share helps bring PH from rare to everywhere!

Show the world you are #phaware of a rare, lifethreatening lung disease. Join our mission to create global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure. Go to phaware365.org to learn how you can help make PH history.

Use the #phaware hashtag. Like and follow us @phaware on Twitter, Facebook and Instagram. Visit www.phaware.global. Download our mobile apps. Register your email with us. You can also support our efforts at phaware.global/donate.

Steve Van Wormer is the co-founder and president of phaware global association (phaware.global). He is also the father of a pediatric pulmonary hypertension patient.

| Rare Disease Spotlight |

Gaucher disease and the potential for misdiagnosis

aucher disease is a genetic condition caused by the inability to make an enzyme, glucocerebrosidase, which breaks down fatty substances in the body. This leads to build up of these substances in many tissues of the body, including the bones, organs and bone marrow. Symptoms of Gaucher disease include anemia and low platelet counts, which can lead to fatigue, easy bruising and bleeding. The spleen and liver can become enlarged, and the bones can be affected, with bone pain and low bone density. The most common form of Gaucher disease is type 1 Gaucher disease, which affects one in 45,000-60,000 people in the United States. Gaucher disease is much more common in the Ashkenazi Jewish population, where it affects approximately one in 850 people.

Gaucher disease can present in childhood with the above features and with poor growth. However, some people with Gaucher disease do not show symptoms until adulthood. This variability and the rare nature of the disease can make the diagnosis difficult. Many people with Gaucher disease experience a delay between symptom onset and eventual diagnosis. This delay may be months or even years long. The features of Gaucher disease show overlap with some more common diseases, leading to further difficulty in making this diagnosis. People with Gaucher disease may initially be suspected to have leukemia, non-Hodgkin’s lymphoma, viral infections or other conditions. While these conditions may be more common than Gaucher disease overall, Gaucher disease is actually more common in the Ashkenazi Jewish population than blood cancers, indicating Ashkenazi Jews with these symptoms should be evaluated for Gaucher disease early in their diagnostic work up. A delay in diagnosis of Gaucher disease can lead to complications, including irreversible bone damage, bleeding complications and worsening of low bone density. Unnecessary procedures may also be performed, including treatment with steroid medications, biopsy of the liver or removal of the spleen. The diagnosis of Gaucher disease can be made with a blood test measuring glucocerebrosidase, the deficient 16

caringvoice.org • Spring 2016 • Advocacy and awareness

| Rare Disease Spotlight | enzyme. Genetic testing (also a blood test) may be useful for confirmation of the diagnosis or in high-risk populations, such as Ashkenazi Jews, as they are likely to have mutations common in their population. The diagnosis may be made by biopsy of the bone marrow, but this is an invasive procedure and may not be necessary if Gaucher disease is diagnosed in another manner. Bone marrow biopsy may also provide false negative results and miss a diagnosis of Gaucher disease.

with enzyme replacement therapy, which is an IV therapy that replaces the deficient enzyme, or with an oral therapy that reduces storage of the accumulating fatty substances. Treatment for Gaucher disease can normalize blood counts (hemoglobin and platelet counts), normalize spleen and liver size, and prevent the bony complications of the disease.

by a clinical geneticist or other specialist with experience in diagnosing and treating the condition. Family members of those with Gaucher disease should discuss this family history with their physicians. An evaluation for Gaucher disease may be recommended for them as they may be at risk for being affected and may have only mild features of the condition.

To reduce the likelihood of misIncreased awareness about Gaucher diagnosis of Gaucher disease, people disease can help some people avoid a should be aware of the symptoms. Peo- delay in diagnosis and treatment. For ple who suspect they may have Gauch- more information about Gaucher disIt is particularly important to con- er disease, or who have symptoms of ease, visit the National Gaucher Founsider Gaucher disease in people with Gaucher disease, should be evaluated dation at gaucherdisease.org. . symptoms suspicious for the disorder A clinical and biochemical geneticist, Dr. Staci Kallish is an assistant professor of and to make the diagnosis in a timely clinical medicine in the division of Translational Medicine and Human Genetics at manner as specific treatment is availthe Perelman School of Medicine at the University of Pennsylvania in Philadelphia, able for the condition. who sees patients with Gaucher disease and other rare diseases. Kallish participates Gaucher disease may be treated

in the International Gaucher Disease Registry, which is funded by Genzyme.

Do you take a medication with a high co-insurance? pertension The Pulmonary Hy s the Association salute on for Caring Voice Coaliti to make everything they do ications life-sustaining med ssible. Now affordable and acce to do their we want Congress part, too.

#Heart2CurePH

Join us on April 14 for PH Call-In Day and ask your Members of Congress to co-sponsor the Patients' Access to Treatments Act and the Pulmonary Hypertension Research and Diagnosis Act. Learn more or get a head start at: www.PHAssociation.org/Advocacy/Alerts.

| Rare Disease Spotlight |

Living with Gaucher disease

y name is Tamara Isaacs Ciocci and I have type 1 Gaucher disease, a rare lysosome storage disorder that occurs when someone is born without the enzyme glucocerebrosidase that breaks down lipids in the cells. The result is a disease cell that accumulates in the blood, bone marrow, liver and spleen.

enthusiastic student, I was so sick that year I missed more than three-fourths of the sixth grade.

people rate is several affects

At 14, a rheumatologist misdiagnosed me with lupus, and prescribed steroids and an anti-malarial drug. I stayed on steroids for seven years, adding 45 pounds of fluid weight to my frame. Over the next few years, my waist grew to 42 inches from the enlarged spleen and liver. My platelets were so low, I was restricted from all activities to avoid the risk of internal bleeding or rupturing my spleen.

Despite the fact that my father was a doctor, it still took 21 years for me to get an official diagnosis. And like me, up to one-third of Gaucher patients are initially misdiagnosed with a number of other conditions, including cancer, lupus or leukemia.

By the time I went to college, my life was no longer congruent with who I wanted to be. During my junior year, I fell off my bicycle and landed in the emergency room. A bone marrow biopsy came back positive. Finally, at age 21, I was diagnosed with type 1 Gaucher disease.

Gaucher affects only one in 45,000 overall, but among Ashkenazi Jews the much higher at one in 850. It is one of genetic diseases that disproportionately our community.

(Top) Tamara Ciocci

My childhood was riddled with illnesses, but with her cousin, Having a chronic illness means you are always no answers. My earliest symptoms were probably Philip. second guessing yourself. I am constantly debatapparent from infancy, but my first significant (Bottom) Ciocci and ing about which ailments are serious enough to her son, Matthew, at symptom was when I broke my left hip at 18 report. What makes it even more difficult to live a holiday concert. months by simply falling off of a bed. The hip with a rare disease is knowing very few physicians break was eventually written off as a freak accident, but I in the world are even aware of the condition, let alone know was still continually sick. Whatever my siblings brought how to treat it. A simple trip to the doctor’s office can be home, I would wind up with bronchitis, pneumonia and very frustrating. croup. There was always an initial pattern: sore throat, fever Now married with a beautiful family, I have started and bone pain. By the time I was 8 years old, these illnesses working again. I continue to battle the bone pain, fatigue were accompanied by an enlarged spleen, liver and low and poor immune system, but just having a diagnosis now platelets. I was misdiagnosed with a number of conditions, gives my doctors the tools to manage my condition. including juvenile arthritis and leukemia. Why should you care about Gaucher? When we learn At age 11, at the beginning of sixth grade, I fell ill with about one rare orphan disease, everybody wins. Gaucher what appeared to be mono. This episode took on a com- disease research has led to new insights on multiple myeloma pletely different trajectory. My dad was taking lab work at and Parkinson’s disease, both complications of Gaucher. my bedside. Different colleagues with different specialties were examining me in my room before and after work. I had Tamara Ciocci lives in Duxbury, Mass., and was a home tutor from the school that tried to teach me as I laid diagnosed with Gaucher disease in 1985 at the age of my head across the kitchen table. Once an avid, social and 21. She is a member of the Genzyme Gaucher Partners program and speaks on behalf of Genzyme Corporation.

caringvoice.org • Spring 2016 • Advocacy and awareness

| Advocacy and Awareness |

A DVO C AC Y & AWA R E N E S S

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Caregiving

Awareness

Take action Self-help

Fight back

Caregiving means advocating for your loved oneâ&#x20AC;&#x201D; and yourself.

Raising awareness can be as simple as writing a guest blog.

Strategies for planning your own awareness or fundraising event.

Sisters share firsthand experiences with fighting pulmonary hypertension through advocacy and promoting awareness.

Terri Seargent offers expert advice on advocating for yourself by building a personal health care team.

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| Advocacy and Awareness |

5 tips for active caregiving advocacy Taking care of a loved one means being an advocate for both of you

hile caregiving comes with many rewards, the emotional or physical impact on people who give care is also undeniable.

According to the Mayo Clinic, caregiver stress is common: “It is natural to feel angry, frustrated, exhausted, alone or sad.”

To prevent burnout or health impact, caregivers need to be well versed in advocacy—both for their own wellness, as well as to provide the best care they can for their loved ones. Consider these five ways to advocate—for both yourself and your loved one—while you give care.

Communicate often Advocate for yourself Caregiver advocacy means communicating well with your loved one, in addition to others involved in care, says the Centers for Disease Control and Prevention. “Understand the needs of you and your family, and work together to make good choices about housing, schools, health services and more,” the CDC recommends. Schedule check-in times to ask about things that are or aren’t working. Allow everyone to speak for themselves in these conversations. If conflict arises, focus on what you have in common: your loved one’s health and happiness. Ask for help when you need it. Tell your employer about your situation if it might impact your work.

Advocate for your loved ones Communicating with your loved one’s wellness in mind often means empowering them. Help them celebrate milestones and speak in terms of abilities, not inabilities. Your loved one may not always have the energy to communicate effectively. Talk with them about how you can be helpful in the communication they have to do regularly— with their medical team as well as friends and family. 20

caringvoice.org • Spring 2016 • Advocacy and awareness

Understand their health—which for many people with a rare disease changes from day to day. It can have a big impact on energy level, mood, irritability and communication.

Put health first Advocate for yourself As a caregiver, you may struggle to find the time or energy to think about your own health—after all, you’re spending a great deal of time thinking about someone else’s. According to the National Institutes of Health, a variety of health issues have been linked to long-term caregiving, including depression and anxiety. Be in tune with your health. Take breaks and maintain a good diet. Exercise as much as you can. Prioritize sleep. Watch for signs that something isn’t right, like changes in weight or sleep patterns, or decreased energy, patience or interest levels in beloved hobbies. See your physician if these signs are present. Especially if physical tasks are involved in caregiving, seek medical attention at the first sign of injury.

Advocate for your loved ones Building a good relationship with medical professionals can offer challenges, but is especially important for giving effective care. According to the National Family Caregivers Association, benefits include: better patient care, less caregiver stress and illness, better use of doctors’ time, reduced health care costs and more satisfaction all around. They suggest writing questions down before appointments and speaking clearly and concisely. Scheduling consultation appointments on top of medical ones can give you or your loved one and the medical professional more time to talk. Be organized. Pick what works best for you—a binder, to-do lists, online calendars, file folders—and stick to it. Keep track of all medical contact info, appointment dates, a log of health-related events, healthy recipes and more.

| Advocacy and Awareness |

Seek resources Advocate for yourself Educating yourself is one of the most important things you can do as a caregiver. According to an article in Pediatric Neurology, a caregiver’s access to more accurate information can mean he or she feels less anxiety. Knowing certain weather or foods cause symptoms to worsen can help in organizing planned outings. Understand the progression of a disease to help alleviate anxiety related to unpredictability. Learn coping exercises or routines known to help with your loved one’s illness. Find ways to get involved with other caregivers.

Advocate for your loved ones Mayo Clinic suggests support groups when your loved one desires connections to others outside of their immediate circle or those who are facing similar challenges. Benefits of support groups include gaining a sense of control, a better understanding of your loved one’s situation and even practical advice about treatment options. Connect your loved one with trusted resources such as the National Institutes of Health. Rareconnect.org or rareshare. org are good places to start for online social communities.

Self-care Advocate for yourself A 2006 study in the New England Journal of Medicine found a link between spousal caretaking and a lowered immune response. Caregiving’s added stress and changes in social or financial support and free time were likely causes, the authors said. Take countermeasures to stay healthy. Take time off when needed. Don’t neglect your friends and family. While caregiving may impact your social life, make sure socializing is still a regular part of your life. What are your favorite hobbies? What do you love doing? Keep these things in your life. Laugh often. And of course, seek outside help as needed.

Advocate for your loved ones Just as taking time to care for yourself helps you as a caregiver, self-care can help your loved one.

You likely already know your loved one well enough to recognize when they may be having a rough time. If you don’t know how to help in these moments, ask them. Allow them to do as much as they want or are able to do for themselves. And don’t forget the importance of simply listening—being a reassuring, supportive presence. Or, find out what kinds of activities make them feel cared for. Try social events or special outings and foods.

Focus on hope Advocate for yourself A study published in a 1992 Journal of Social and Clinical Psychology found higher levels of hope in long-term caregivers is linked to many benefits, including less burnout. Maintain hope by taking on one issue at a time. Focus on however much you can handle. If you are struggling with hopelessness over a financial concern, for example, start by setting aside five minutes each day to research and explore solutions or reach out to someone who might be able to help. While some days are more difficult than others to maintain hope, one ongoing strategy to remember is to remind yourself why you’re doing what you’re doing.

Advocate for your loved ones Hope is linked to better health. It is also a dynamic part of any diagnosis. Some days or years will present different causes for hope. Maybe there’s hope for better treatment. Maybe it’s simply a new, fun activity coming up. You can help in small ways by incorporating things like music, writing, meditation, exercise, social activities, sunshine and more into daily routines. Watch for signs your loved one might be struggling, including depression, bitterness, hotheadedness and denial. Seek professional help in coping with these issues as needed. By maintaining hope, caregivers can demonstrate the importance of living your life, one day at a time. 21

| Advocacy and Awareness |

3 ways to raise awareness Educating others can help your cause

hen faced with a chronic diagnosis, giving time or energy to anything beyond immediate health needs may seem daunting, or even impossible.

And sometimes that’s OK. But don’t underestimate the impact of raising awareness for your or a loved one’s condition. The rewards—including easing loneliness, advising others, raising funds toward better research or educating the medical community—could have a far-reaching benefit for you and others. Consider these strategies for effectively building awareness among friends, family or the general public.

experience felt a lessened sense of isolation as well as a greater sense of purpose. Thankfully, there have never been more opportunities to share stories. Find the one that works best for you and give it a try.

Here are some ideas: ■■ Find a blogger, news source, TV station, etc., covering a related topic and offer to be interviewed or write a guest blog. ■■ Contact a rare disease organization and see if they’d like to share your story. (Want to share your story with CVC? Contact us at: magazine@caringvoice.org.) ■■ For a more private option, join a support group. Check your local church or hospital. ■■ Or, join a group from your home. Try Facebook groups or online support communities for connecting with likeminded individuals. Tip: Consider whether any online forum you want to join has security settings in place. Do you have to create a username in order to access information? Is the site secure (does its address begin with https://)? Is the Facebook group classified as “private”?

Tell your story Many people with rare diseases live a long time without meeting another person with the same diagnosis. Hearing the experience of another person can help them feel less alone or in the dark. According to a study on bloggers with a chronic illness published in the Journal of Medical Internet Research, people with chronic pain or illness who blogged about their 22

caringvoice.org • Spring 2016 • Advocacy and awareness

Understand your disease The more up-to-date and accurate information you have about your disease, the more beneficial and effective awareness you can raise. Educate yourself as best you can by using online or print resources, talking to others with your disease, finding organizations related to your disease or joining support groups. According to a 2007 Pew Research Center study on health care and the Internet, 67 percent of people who go

| Advocacy and Awareness | online to search for information regarding their chronic conditions do not consistently check the source and date of the health information they find there. Check the source of your information and its date—the most recent peer-reviewed journals, certified organizations, multiple medical professionals, etc., are safer bets than an encyclopedia entry from 1970. Well-established communities with a social element allow you to learn from others who have gone through something you have questions about. Even if you’re looking for medical information about your disease, your peers have a lot to teach you. But keep in mind that not everyone is an expert. A quick Google search of the people offering suggestions can often help you better measure the validity of their claims.

Communicate strategically Often the first people we communicate with during times of health crisis are family members. It’s a great idea to talk with both immediate and extended family, because they can offer support, but also because if they are aware, they might inform you about any family history with the disease. The Office of the Surgeon General thinks this is important for all families to talk about and even provides a tool online for compiling a “Family Health Portrait.” The tool, the office says, can help with earlier diagnoses of hereditary diseases as well as provide information on risks that run in families, so that preventative measures might be taken (bitly.com/ family-health-portrait). To avoid miscommunication or missed networking opportunities, try these strategies for talking about your or a loved one’s disease.

Prepare Prepare for communication with friends and family by thinking through and anticipating their questions and feelings, and having some idea of what you’d like to convey. What do you want them to know about how you feel? What will you say if they don’t respond as you hoped? What if they ask to help? If you’re talking with someone you aren’t as familiar with—a class, a journalist, a doctor—what do you want to be sure they know after they meet you? Consider including

your symptoms and process of diagnosis, because this information will aid medical professionals as well as others seeking a diagnosis.

Plan Making a plan to specifically connect with others is beneficial for a lot of reasons, one of which can be to learn more about communicating your condition and connecting with others who are working to do the same. Conferences, meet ups and other networking events can help you find places to tap into others’ awareness or advocacy events.

Reflect Take time after an event or conversation to reflect on what worked and what didn’t. Did you miss any opportunities for connecting with others? Do you regret things you said or that went unsaid in communicating with certain people? Try to think of ways to prevent similar things from happening.

Pay it forward Keep the conversation going by sharing your communication or other experiences at conferences, with organizations or in those online communities. Communication is at the heart of raising awareness. The more practice you get, the more effective you will be in taking active measures to tell people about your disease. 23

| Advocacy and Awareness |

Planning your own event

wareness is one of the most important tools in combatting rare diseases by encouraging medical advances and educating the public. Events to raise awareness can be held any day of the year. Below are some tips for getting started on hosting your own event (compiled from information from the Global Genes Project and the Pulmonary Hypertension Association).

Plan: ■■

Make a timeline of when you’ll accomplish logistics like organizing a planning committee, securing sponsorships, marketing tasks, etc.

■■

Budget your expenses. A general rule of thumb is to make your expenses 20 percent of dollars raised.

Tip: For your first event, get ideas and resources from those who have planned one before and who offer free advice online. Build on that in years to come. A guide from the Pulmonary Hypertension Association can be found at: phassociation.org/SpecialEvents/Guidebook

Market: ■■

Brainstorm who your audience is. Who will you invite?

■■

Give the event personal appeal by telling a story about the event. Why are you holding this event? Use that story in every step of marketing.

■■

Create an event logo. Put it on everything.

■■

Take some photos that illustrate your story to include as you spread the word.

■■

Pick and reserve a location. Consider educational institutions, outdoor community areas or local businesses.

Create an event page on Facebook. Share on your page. Ask or incentivize your friends to post. Spread as widely as possible.

■■

Set goals for the event. Where will the money go? How will the money be collected? Find a 501(c)3 organization if you want donations to be taxdeductible.

Contact local newspapers, TV and radio stations with event details, story, logo and photos.

Tips: Use numbers for credibility. Put a person at the heart of the story.

Start here: ■■

Come up with an idea. (See CVC’s Pinterest board, bitly.com/awareness-event-ideas, for suggestions.)

■■

Pick a date and time. Check your local community calendar to make sure another major event the same weekend won’t deplete your potential attendees.

■■

If needed, find sponsors. The Pulmonary Hypertension Association provides grants for firsttime PH events. Find out if an organization related to your cause can help. Visit local businesses or see if your friends and family have contacts that can help. Gather a committee to help with planning. caringvoice.org • Spring 2016 • Advocacy and awareness

Organize: ■■

Recruit volunteers to help with logistics.

■■

Have a timeline of the event.

■■

Thank people publicly at the event.

| Advocacy and Awareness |

Be your own healthcare advocate

hose with chronic conditions are particularly responsible for taking control of their health care.

condition hasn’t worsened. But it’s impossible for them to know about each new technology or medicine. First:

You might think, “I barely have the strength to get dressed every day. How can I be my own advocate?”

■■ Do your research, then discuss your findings with your team members and get their input.

The truth is, no one cares more about your health than you do—not your children, not your spouse and not your doctor. But that doesn’t mean you must do it alone. It means you are the manager of your health care team.

■■ Take your request and learnings to your physician. If your physician won’t assist you, be sure to understand his or her reasoning. Don’t be afraid to continue the discussion to get your desired outcome.

Be knowledgeable

■■ Consider seeking a second opinion from your family doctor or another specialist if necessary.

To be an effective manager you need to be as knowledgeable as possible about your diagnosis and care. ■■ Understand your insurance coverage and how to pay for your care.

■■ Find resources that can assist financially, if necessary. ■■ Network with others with the same condition to gain insight into all facets of your health care. ■■ Research your legal rights with regards to employment and disability.

Build your team Your team can be any size, but choose a few key players, including a specializing physician. Choose wisely, but know that you can “hire” and “fire” this person. They work for and are getting paid by you. Research and interview physicians to make sure they are a good fit. Be sure the physician is well educated and knowledgeable about your disease. Choose an advocate for your team who will be your voice when you are unable to speak for yourself. Other members of your team could include peers with the same condition, a home care nurse, a respiratory therapist, caregivers or family members.

Doctor’s appointments ■■ Specialists may only have 15-20 minutes scheduled for you. Write down everything you want to discuss, including care options and desired services or aids. List prescriptions that need to be refilled. ■■ The physician needs to be made aware of any changes. A health care journal can help document changes to communicate. Specific anecdotes help physicians quickly assess the situation. ■■ Get copies of all tests before you leave the office. You are more likely to pay a fee for copies after you leave. ■■ Take someone with you to be a second pair of ears. Have them write down everything that’s said. If you go alone, consider recording the appointment. Let the health professionals know you are doing this. ■■ Most importantly, stay in control. Ask questions and get explanations that you can understand. Don’t let the physician leave until you are satisfied. Find these and even more of Terri Seargent’s tips online at caringvoice.org.

Available services and aids As you confer with team members and increase your knowledge, you may find new care options to try. Discuss anything you’d like to try with your physician. Some physicians may resist changing a regimen when your

Terri Seargent has advocated for patients’ workplace rights for many decades. Her personal story has impacted medical privacy bills and anti-genetic discrimination laws. 25

| Advocacy and Awareness |

The importance of advocacy Sisters use advocacy, awareness to fight back against PH Alex Flipse was diagnosed with The president of PHA, Rino pulmonary hypertension in 1998. Her Aldrighetti, says, “Everyone affected sister, Debbie Drell, is her primary care- by PH has the right to fight back as giver. Debbie discusses the importance of much or as little as they are willing awareness and advocacy for patients and and able to do.” caregivers, as well as in her work at the My job at PHA is to help as many Pulmonary Hypertension Association. people as possible fight back. Having a sister with PH, fighting back also keeps my spirits up and strengthens our n the 1990s, when my sister relationship. And for us both, fighting Alex was diagnosed with pulmonary back through political, medical and hypertension (PH), no one—I general PH awareness has been a mean, no one—in our lives had ever learning process, and a great gift. heard of PH. We felt so alone.

At first, “fighting back” meant simply getting people to hear the words “pulmonary hypertension” strung together for the first time. It meant raising awareness locally, reaching out to find others affected by PH. Alex wrote a letter to her then-hometown newspaper in Cuero, Texas, about her diagnosis, and was thrilled when they published it. In a town of 4,000 with a disease we learned affects two to three in a million, it was a shock to find another person with PH—a young girl with the disease associated with lupus. This was a huge breakthrough. As Alex says, “Raising awareness helps the newly diagnosed not feel so alone. It gives [them] hope.” What Alex never divulged to me then was that she got tips for writing to the paper from an organization called the Pulmonary Hypertension Association (PHA). I had not heard of the association yet, but I liked that she had found tools to fight back. Now, 20 years later, I work for that organization. 26

Medical awareness For the most part, rare diseases are complex, relatively unknown and physicians don’t expect to see them. For me, this need for medical awareness and education hit a little too close to home.

standard in diagnosing PH—and not a very fun or cheap procedure). Turns out, I was having an allergic reaction to construction around my apartment. PAH is a disease of exclusion—you have to rule out other diseases because symptoms are common and PAH is rare. Doctors observed Alex’s shortness of breath and told her to exercise; some put her on anti-anxiety medications. Her PH was very advanced before diagnosis, and we nearly lost her before she was referred to a specialist. While PH therapies are more successful and available than ever, we still have a lot of work to do. A recent study found 94 percent of PAH patients were not diagnosed to completion in the recommended diagnostic algorithm. And long-term outcomes are still not optimal. Patients still die from PH, or require transplants or hospitalization.

After moving to Washington, D.C., in 2004, I started experiencing difficulFor newly diagnosed patients and ty climbing stairs, shortness of breath and tightness in my chest—common long-term survivors, just being aware symptoms of PH. My sister and I pan- of the Pulmonary Hypertension icked a bit, and I went to see a local car- Association makes a huge difference. diologist, who diagnosed me with pul- The PHA Scientific Leadership Counmonary arterial hypertension (PAH), a cil, comprised of leading researchrare and particularly progressive form ers and physicians in the field of PH globally, reviews all PHA programs of PH, after an echocardiogram. I got a second opinion at the now and educational materials. In the U.S., PHA-accredited Center of Compre- PHA is the only organization accredhensive Care at Johns Hopkins Pul- iting PH hospitals and clinics. PHA is putting a lot of energy monary Hypertension Clinic and was put through a battery of tests—more and resources into increasing medical than I had received at the local cardiol- awareness, education and standards ogy office. The doctor told me the test of care. We’re fighting for early and results looked OK and I didn’t need accurate diagnosis. The strategy is this: a right heart catheterization (the gold if a million people are aware of PH,

caringvoice.org • Spring 2016 • Advocacy and awareness

| Advocacy and Awareness | we might have several people—like my sister—diagnosed with PH; if a million doctors are educated about PH, we will have thousands more.

in the upcoming film, The Perfect Match, produced by Queen Latifah, whose mother has pulmonary hypertension associated with scleroderma.)

A voice on Capitol Hill When Alex was diagnosed, I was 21 and didn’t know what to write to my representatives. But I knew people needed to learn about PH and we needed a cure, so I took my experience to Congress to try to make a difference.

tool for success is your personal story.

A voice for patient rights We also learned along the way that advocacy has another meaning beyond Washington: fighting for the rights and care of a patient.

Many of the professionals and first responders who treated Alex over the years had never seen a pulmonary hypertension case until she was in the throes of an emergency. As her sister, I Alex shared her definition of advo- have to stay calm and confident enough cacy: “For me, it’s going out and shar- during crises to tell the EMTs what her ing my journey with PH with anyone medical needs are. This is advocacy, too. and everyone who listens. It helps For Alex, self or patient advocacy those who feel like they are alone, not also means keeping good track of be so alone … but most importantly medical records and coordinating for me, it possibly helps bring us closer care. Between tracking medication to the cure. Tell the right people, and dosages, pharmacy numbers, insurance if they listen, things go into motion.” plans and more, PH can be a time-

(Above, top to bottom) Alex and Debbie at Takoma Park City Council, in the PHA office in Washington, D.C., and at a Caring Voice event.

Awareness could help end stigma for a disease that is so misunderstood: e.g., people don’t understand why a PH patient needs a handicapped-accessible spot since “they don’t look sick.” PHA is bringing national attention to PH with $14 million in donated media to raise awareness among millions through the #Heart2CurePH public service ad campaign. Since November, these PSAs aired on television (over 17,000 times), radio, magazines and bus transit billboards around the country. And celebrity ambassador Terrence J recently joined the campaign. (He stars

Alex and I had so much to learn at first. Each congressional session PHA has worked with supportive members of Congress to introduce bills to secure research funding and raise public awareness about PH and the needs of individuals with rare diseases. Our current legislation, the Pulmonary Hypertension Research and Diagnosis Act, helps raise awareness and maximize research dollars. Now is a critical time for political leaders to receive as many calls, emails and visits about the bill as possible. Join in at: PHAssociation.org/ AdvocacyActionCenter. If PH affects you, then you have a story to tell and a voice on Capitol Hill. Anyone can fight back as a legislative advocate, because the most important

consuming disease. Alex uses her cell phone and has a list of meds she takes and dosage amounts; but she also created a binder of information with PHA’s Empowered Patient Online Toolkit (designed by experienced PH patients and health care professionals). Whether you have PH or not, the binder could be useful. It’s available at: PHAssociation.org/OnlineToolkit. Fighting back through self or patient advocacy actually improves the quality of our care and makes life easier. Over the last 17 years, fighting back has also helped Alex and me to connect with others (such a relief!), make new friends and experience joy from serving others. We have to fight back, because if we don’t, then who will?

Debbie Drell has worked for the Pulmonary Hypertension Association in Washington, D.C., since 2004, coordinating 245 support groups for patients, caregivers and health care professionals. She has been the primary caregiver of her sister, Alex, for six years. 27

| In Your Words |

Young & determined Diagnosed with narcolepsy when he was just 8 years old, today Vinny Guarini wants to help others understand the disease

first had symptoms of sleepy. A few times I have forgotten to My symptoms are controlled by my narcolepsy when I was 8 years take the medicine and had to call my medicine for the most part. As I grow old. I had broken my heel at mom to bring some to the school. I have to keep increasing the dosage so school and could not play outside. Most of my friends know I have that it still works. Sometimes I still get Every time I sat down I would fall narcolepsy. Before I was diagnosed, sleepy even if I have taken the medicine. asleep. It lasted for a few months be- some people would laugh or make fun I am 11 now, and I am not as sad fore my mom realized I wasn’t just of me for falling asleep—sometimes that I have narcolepsy as I was at first, tired or depressed. very fast and in strange places. Some because like one doctor told me, some kids are much sicker than I am. I still My mom took me to our regu- of them still don’t really understand. hope that someday they will find a cure lar doctor who first wondered about My teachers know about my nardepression, because of the constant colepsy. Some have been more un- or at least better medicines to help me sleeping. But my mom told the doctor derstanding than others. It was really cope with narcolepsy. she thought it was something more, so the doctor sent us for a sleep study. “... even those familiar with the The sleep specialist realized there was something else going on and sent us to term don’t know that kids can have see a neurologist at a children’s hospital narcolepsy or any specifics about in Fairfax, Va. The neurologist did an the disease.” MRI and some other tests, and took some blood samples, to check for genetic links. The blood tests showed I did difficult before I had medicine or knew What’s hard about having narcolepcarry the genetic marker for narcolepsy. exactly what was wrong. It took my sy is that I don’t have as much energy as At first I was very angry and sad. I mom about a year of going back and my friends. I can’t focus and concentrate gained a lot of weight (40 pounds) be- forth with me to doctors before we got as well as I used to, so my schoolwork is cause I was not active anymore and did the actual diagnosis. None of the doc- not as good as it was before. Sometimes not feel well. I had to remember to take tors we saw at first had ever treated a I am even sleepy right after school and medicine everyday, and doctors told person so young with narcolepsy before. I can’t get my homework done. I don’t like sleepovers anymore because I am me I would probably have to take medI have had to educate people at usually not able to stay awake past 8:30 icine everyday for the rest of my life. school and my friends about narcolepsy. or 9 p.m., even on weekends. Once I got my medicine figured out, I tell them that it is nothing I have any When I grow up, I hope my and correctly dosed, being at school control over and that it makes me sad symptoms will go away or someone will was OK. Sometimes if I sit for a long if they are mean to me or tease me for find a cure or a better medicine. I hope time, it’s hard to concentrate, or I get falling asleep. 28

caringvoice.org • Spring 2016 • Advocacy and awareness

| In Your Words | (Left) Vinny Guarini wears equipment from an overnight sleep test he took while seeking a diagnosis for his excessive sleepiness.

(Right) Vinny Guarini will be 11 years old on April 15. Many of his doctors have never treated someone so young with narcolepsy before.

that having narcolepsy won’t keep me from doing things other people can do, or stop me from being successful in life. For a project at school called, “YO, there’s a problem and I will solve it!” I chose to try to raise awareness for

narcolepsy, because most people don’t know about narcolepsy, and even those familiar with the term don’t know that kids can have narcolepsy or any specifics about the disease. I hope to help keep other people from being

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Registering is easy! Visit caringvoice.org and click on the Cloud 9 logo to register and access your account.

treated badly or made fun of because they have a disease. I want other kids with narcolepsy to know that they may have to explain the disease to people to make them understand—and that even though they are made fun of or teased, it’s not their fault. I want them to know that once they get a diagnosis, their symptoms will be easier to understand and manage. My advice for others with narcolepsy is to never give up! If your doctors don’t understand or won’t listen, find a new one. If medicines don’t work, try other ones. If people make fun of you even after you explain what narcolepsy is, maybe they don’t deserve to be your friend. Your family will always love and support you.

| Legal Corner |

Understanding disability assistance

Frequently asked questions

This is part one of a four-part series aimed at helping you understand the U.S. Social Security’s disability assistance.

hose with chronic illnesses often have to make the difficult decision to stop working. A physician may suggest it, or you may realize on your own that working is actually harming your health or no longer sustainable. This can be a result of the exacerbation of symptoms in work environments, diminished energy, or the need for more time to manage complex medical care.

What are the different types of disability benefits?

There are two main types of disability benefits: Title II Social Security Disability Insurance (SSDI), and Title XVI Supplemental Security Income (SSI).

Social Security Disability Insurance benefits are based on work credits, or the taxes you have paid into the Social Security system. In order to be eligible for SSDI benefits, If you are no longer able to work due to chronic illness, you must have paid into the Social Security tax system. For Social Security disability benefits can provide continued inexample, in 2016, you gain one work credit for every $1,260 come and health insurance options. (this amount changes from year to year) you earned under Like many government benefits programs, however, the Social Security, with a maximum of four credits per year. pathway to receiving disability benefits can be confusing Generally, if you have earned at least 40 credits, and 20 were and time consuming. The disability process for individuals in the last 10 years, you qualify to apply. The younger you with rare, chronic diseases can be especially challenging are, the fewer credits you may need. To check the status of because many times their diseases, symptoms and resulting your work credits for SSDI, you should call your local Social limitations do not fall within traditional definitions and no- Security office and ask for your date last insured. You must tions of what it means to be disabled. prove disability by the date that SSA provides. Those suffering from chronic diseases may have some Supplemental Security Income, on the other hand, is a good days where they could potentially work, but those needs-based program. In order to be eligible for SSI, you days are often followed by a slew of bad days where it is must meet specific income and financial resource guidelines. difficult to complete even simple tasks. Rare diagnoses If a single person has more than $2,000 or a married couple or orphan diseases can also be largely misunderstood or has more than $3,000 in financial resources, you will not even unknown to medical personnel and Social Security be eligible to receive SSI. Financial resources can include Administration (SSA) representatives. All of these factors, savings and retirement accounts, secondary land holdings coupled with the complex nature of the application process, (not your primary residence), and any other cash holdings. obscure qualification guidelines and low national approval rates, deter countless individuals from applying for federal disability benefits. Can I apply for any benefits while I am working? At Caring Voice Coalition, our Appeals and Disability team is committed to alleviating one area of stress in our patients’ lives by helping them navigate the disability process. We hope that the answers to the following frequently asked questions will help you better understand the disability process.

caringvoice.org • Spring 2016 • Advocacy and awareness

Yes, as long as your earnings are below a certain amount. In order to file an application for either SSDI or SSI, you must be unable to maintain substantial gainful activity. In other words, you must be making less than $1,130 gross per month for the year 2016. Please note that the threshold for blind individuals is different.

| Legal Corner |

How does SSA decide if I am disabled?

For both the SSDI and SSI benefits, SSA will go through a five-step medical evaluation after they verify that you meet the work credit or financial qualifications for benefits. SSA will look to see if: 1. You earn less than $1,130 per month. 2. You have a severe condition and your condition has lasted, or is expected to last, 12 months or more. 3. You meet or equal one of their child or adult Listing of Impairments (conditions considered severe enough to qualify as a listing). First, SSA will look to see if you meet the specific test requirements, symptoms or limitations set forth by a listing. If you do not meet the requirements of a listing, SSA will look to see if your medical conditions are equal in severity to a listing. If SSA determines that you meet or equal a listing, then they will approve your disability claim. The complete listings can be found on ssa.gov. If you do not meet or equal a listing, SSA will go on to Step 4 and Step 5 of their evaluation. 4. You can perform any of your past relevant work. 5. You can perform any other job in the economy. If SSA decides you are able to perform past work or any other work, then you will be denied benefits.

(ALJ) Hearing, where you appear before a judge who will determine the outcome of your claim. Right now, it takes SSA between 16 and 18 months to schedule a hearing, and then after a hearing, it generally takes about three months for the judge to write a formal opinion. In 10 states—Alabama, Alaska, parts of California, Colorado, Louisiana, Michigan, Missouri, New Hampshire, New York and Pennsylvania—disability cases skip the Reconsideration process and go directly before a judge.

Once I am approved, how much money will I receive?

For SSDI, your monthly benefit award will depend on how much you paid into the Social Security tax system. You can determine your monthly benefit amount by calling your local SSA field office. For SSI, the maximum benefit for the year 2016 is $733 per month.

When will I get my money?

For SSDI, there is a five-month waiting period that extends between the date SSA finds you disabled and your date of entitlement. SSA always pays you the month after the end of your five-month waiting period. For SSI there is no such waiting period and payments should begin soon after SSA issues a final award letter.

What insurance can I receive?

For SSDI, you will become eligible for Medicare 24 months after your date of entitlement. SSI comes with Medicaid The current national average for an initial claim is six eligibility. Most states defer to SSA’s guidelines for Medicaid, months. Depending on your diagnosis, and whether SSA so it should begin once you start receiving benefits, but 11 defines it as terminal, you may be able to ask SSA to expestates have more stringent income requirements. dite the processing of your claim. The list of Compassionate Allowances and the list of Terminal Illnesses are available on ssa.gov. I’m overwhelmed! Where can I turn for help?

How long will it take for SSA to give me a decision?

What if I am denied benefits at the initial level?

If you are denied benefits for medical reasons, you have the option to appeal. The appeal process differs depending on where you live. For most of the country, there are two separate appeal stages. The first, Reconsideration, is a paper review of your application, and the national average for a decision at this stage is currently about four months. The second stage of appeal is the Administrative Law Judge

CVC is here to help! We can assess your eligibility and help you navigate the disability process from the initial filing through representation at an ALJ hearing. To see if you qualify for our assistance, call us at 888-267-1440. CVC Patient Advocate II Nora Ciancio has a bachelor’s degree in political science and economics at the University of Richmond (Va.), and a J.D. at Penn State Law in State College, Pa. Her background is in public health and health care law, and she is admitted to the Virginia Bar.

| Health Watch |

invisible invincible i s no t

“Those who mind don’t matter and those who matter don’t mind.” — Bernard Baruch

eople often use “invisible illness” and “chronic illness” interchangeably. “Chronic” suggests something permanent and long-term. However, the word “invisible” is much more personal and perceptual. It describes the sense of isolation someone with such an illness must feel. It conveys a need to be seen and understood— which can seem impossible to many living with a chronic and invisible illness.

Despite the feeling of isolation an invisible illness can cause, such a condition is common. Nearly one in two Americans has a chronic condition.1 Millions of those are invisible illnesses. For instance, about 100 million American adults suffer from chronic pain.2 But no external clues identify the illnesses. They don’t look sick. They don’t use a wheelchair. They don’t have an oxygen tank. In addition to not feeling well, individuals with this kind of chronic invisible illness bear the burden of others—family, friends, coworkers and even health care professionals—who don’t believe they are ill because they don’t look sick. Patients living with an invisible illness frequently harbor a strong sense of being misunderstood. Sentiments such as, “But you look fine,” “You need to change your diet or lose weight,” or, “You just need to have a more positive attitude,” only serve to deepen the despair a person may feel. More appreciated things to say are: “It must be difficult to have a disease that makes you feel so bad 32

caringvoice.org • Spring 2016 • Advocacy and awareness

| Health Watch |

More appreciated things to say are: ... “How are you doing today?” or, “Is there anything I can do to help?”

on the inside but doesn’t show on the outside,” “How are you doing today?” or, “Is there anything I can do to help?” These statements convey a much better sense of understanding—or, at least a desire to understand.

do not use a cane, wheelchair, walker or crutches.4 Activism to increase public awareness plays a huge role in changing attitudes. Websites like invisibledisabilities.org and butyoudontlooksick.com help.

When patients don’t improve and their symptoms continue to worsen, they are frequently thought to be exaggerating, malingering or simply not making adequate effort to Patients with invisible illness are get better and recover. This thinking can even extend to the often hardest on themselves, add- physicians that care for these patients. Physicians can being to the toll of loss and ill-health. come frustrated when they don’t see their patient improve, They can feel the illness is their and patients can become frustrated with their physicians fault. Common social realities of for not making them better. Compounding the matter, life with an illness, such as missthese patients may travel to many different physicians being special events or tiring quickly fore finding one with whom they can truly communicate during normal activities, can cause and feel comfortable. It is often years before a patient with extreme feelings of guilt. Sympa chronic illness receives a formal diagnosis, allowing them toms of major depression also go to begin accepting that they can manage the illness, but along with these disease processes not cure it. An appropriate course of treatments can be inand appropriate treatment should be instituted. Depression must not be looked upon as simply a normal part of the stituted to keep patients at their best, such as pulmonary process of an invisible illness (see Community, Fall 2015, rehabilitation for those with idiopathic pulmonary fibrosis “Lifting the Cloud of Depression” for more on depression). or pulmonary hypertension. Society as a whole must keep an open mind. Anyone may Life in the workplace can be equally difficult, despite protections under the Disability Discrimination Act of have limitations that are not apparent at first glance. Again, 1995, an act that attempted to take the term “disability” out activism can help increase awareness and change attitudes. of the realm of wheelchairs and assistive devices. Potential Support groups can help patients with an invisible illness employers frequently mistreat those with invisible illness, feel less isolated and more affirmed. It is important for a believing a person who asks for their rightful accommo- patient to be able to share their experiences. Everyone can dations is trying to take advantage of the system. From help in achieving a reality where invisible illness is more 2005 to 2010, the most common disability discrimination visible and less stigmatized, simply by extending to others charges filed with the government were for a set of condi- the understanding they would hope to receive. tions cited as invisible.3 Those with invisible illness constantly fight an uphill battle. Robert E. Mayfield, M.D., maintained an active Judging others based on appearance without considering what may be under the surface seems to be human nature. Someone without an invisible chronic illness who sees a person park in a handicapped-accessible spot at the grocery store, then get out of the car with no cane or other assistive device and walk normally, will often make negative assumptions. But, for an accurate assessment, we must take more than simply what is visible into consideration. The person in the accessible spot may suffer from chronic pain or a cardiopulmonary illness that forces them to rest after walking only 200 feet. In fact, according to the National Institutes of Health, the vast majority of Americans with disabilities

family medical practice for 15 years. He now oversees CVC’s Department of Medical Affairs and Compliance, providing strategic medical advice and counsel on new disease funds prior to program implementation.

1. http://www.cdc.gov/pcd/issues/2013/12_0239.htm 2. http://iom.nationalacademies.org/Reports/2011/Relieving-Painin-America-A-Blueprint-for-Transforming-Prevention-CareEducation-Research/Report-Brief.aspx 3. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5816a2.htm 4. https://www.nichd.nih.gov/health/topics/rehabtech/conditioninfo/ Pages/people.aspx

| At a Glance |

CGD

Chronic Granulomatous Disease

Chronic Granulomatous Disease is an inherited disease of the immune system that affects nearly 6,000 people in the U.S. In CGD patients, a special type of white blood cell has difficulty producing superoxide, which is required to fight certain types of bacterial and fungal infections.

The X chromosome carries the defective gene. CGD is more common in males due to the mechanism of inheritance known as “X-linked recessive.”

Because the ability to fight certain infections is impaired, skin infections, bone infections and recurrent pneumonia are common. A child that has such recurrent infections should be tested for CGD. This can be accomplished by testing for how much superoxide the body is producing. Confirmation of the disease is done through genetic testing.

Antibiotics are used to prevent the recurrent infections associated with CGD. A medicine known as an interferon can boost the immune system to fight the infections as well. The only known cure for CGD is a bone marrow or stem cell transplant.

For more resources and support, visit: cgdassociation.org cgdsociety.org

Sources: http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease/chronic-granulomatous-disease.aspx https://www.nlm.nih.gov/medlineplus/ency/article/001239.htm http://www.cgdassociation.org/doihavecgd.php http://rarediseases.org/rare-diseases/chronic-granulomatous-disease/

caringvoice.org • Spring 2016 • Advocacy and awareness

| Healthy Eating |

Tea talk In an ongoing quest for healthier food and drink choices, one simple change you can make for the better is swapping sodas, juices or other sugary drinks with tea. Evidence continues to mount that the drink may offer more than simply less sugar: it is full of antioxidants, a compound linked to a wide variety of health advantages. Letâ&#x20AC;&#x2122;s talk about types of tea, the best ways to brew, and all of the benefits your body might receive from the versatile drink. Continued on page 36

| Healthy Eating |

White Tea: White tea contains the least caffeine of any tea. This hydrating tea has a sweet, fragrant taste and more potent antioxidants than more processed tea varieties. The young leaves are plucked and dried instantly, leaving no time for oxidation.

Green Tea: Green tea has more caffeine than white. The tea leaves are heated before they’re dried, giving it a toasted or grassy flavor, as minimal oxidation occurs. Green tea contains molecules called polyphenols, thought to be responsible for many of the tea’s benefits.

Researchers have studied tea for decades, demonstrating a variety of health benefits, which come mostly from nutrients in the organic material of tea leaves, polyphenols, known for having antioxidant and anti-inflammatory properties. The oxidation process leaves black and oolong teas with slightly fewer polyphenols than whites and greens, though they still have plenty. Drinking tea was linked to a lower risk of diabetes in multiple large, long-term Harvard School of Public Health studies of doctors and nurses that began in the 1970s and 1980s. The studies found tea could also play a role in encouraging weight loss, lowering cholesterol and protecting against free radicals that can be a contributing factor of cancer. Many studies also associate tea with a lower risk of depression and stroke, thanks in part to its caffeine content. 36

caringvoice.org • Spring 2016 • Advocacy and awareness

Oolong Tea: Oolong tea, often served in Chinese restaurants, is made with torn, bruised and partially oxidized leaves to give it a fuller flavor, resulting in a smooth finish with a floral smell. This tea has more caffeine than either white or green, but somewhat fewer antioxidants.

Black Tea: Black tea leaves are processed, often in a procedure called rolling, and given the most time to oxidize. The process gives it a bitter, strong taste, high caffeine level and high tannin counts. Tannins can cause a dry feeling in the mouth. Black tea is popular in Western cultures.

Not a miracle cure Although tea seems to be connected to overall health, some uncertainty remains as to how it works its wonders. Don’t expect a sudden improvement in your health with the addition of tea. Think of tea as a very small part of an overall healthy diet and lifestyle. Bottled teas sold in supermarkets can be filled with sugar or artificial sweeteners, and many aren’t as antioxidant rich. Most of the benefit is lost in these varieties. All tea, even decaffeinated varieties, has some caffeine in it. If you are susceptible to insomnia, anxiety, upset stomach or are on certain medications, you may want to avoid tea. Check with your doctor before adding tea to your routine.

| Healthy Eating |

How do you brew the perfect cup of tea? Check out these tips, and you’ll be on your way to expertise. Measure: A ratio of one teaspoon of tea leaves for every eight ounces of water is a general guideline for either loose-leaf or bagged tea. In subsequent brews, you can add or decrease the amount of tea or water, to alter its strength, flavor and caffeine content. Each measurement is a personal preference. Play with the ratio until you find your perfect cup. Heat: Many brew tea by putting a teapot on the stovetop and waiting for the whistle to blow. Little do they know, the recommended temperature to brew and enjoy most varieties of tea is not at a rolling boil, but slightly below. Oxygen in water helps develop tea’s flavor. Water at a full rolling boil has the least amount of oxygen, and will leave certain tea varieties tasting flat or dull. A good rule of thumb is to use lower temperature water with younger and less oxidized teas, because the leaves are more fragile. Time: The longer tea steeps, the higher the caffeine content, and the more bitter the flavor. Recommended steep time varies depending on the type of tea, but 3-5 minutes generally ensures a well-balanced cup. A good rule of thumb is to steep longer with more oxidized teas. This will bring out the tea’s fullest flavor. Add-in: Once the tea is done steeping, many enjoy the beverage plain, while others add lemon, sugar, honey or milk. Milk is recommended for use with tea instead of cream, as cream is heavier and can mask the flavor of the tea. Avoid using lemon and milk on the same cup of tea; the citric acid from the lemon will curdle the milk proteins. To avoid adding unhealthy sweeteners, try a fruit-flavored tea, or add your own fresh fruit. Continued on page 38

| Healthy Eating |

Hot or cold? If hot tea just isn’t your thing, you’ll be glad to know iced tea likely carries the same benefits. Most studies show either preparation method maintains similar levels of antioxidants. However, know that preparing iced tea from loose leaves results in more antioxidants than using an instant powder. You can make your hot tea iced by preparing it with 50 percent more tea to account for dilution from ice. Allow your tea to cool before serving over a glass of ice. Or, avoid dilution by filling an ice cube tray with tea and freezing it, then use the cubes in your normally brewed tea.

Loose leaf or bagged? Loose tea leaves tend to be higher quality than those already bagged. Bagged tea is mostly dust from the broken leaves. Those broken leaves no longer have the strong aroma or essential oils that are fundamental to tea. This difference can affect taste, since more tannins are released. Tea leaves in bags don’t have extra space to expand as they steep, which also reduces flavor. Tea bags may contain slightly fewer antioxidants, but still enough for you to reap some benefit if bagged tea is a more convenient, cheaper option.

Spice up your cup Many prefer their tea flavored, such as chai, peach or mint. While these teas may satisfy a different taste bud than black or white tea, flavored teas should be approached with caution. Many sold in stores or restaurants contain artificial flavors and sweeteners. Healthier flavored teas have extracts from natural sources, such as berries, lemons or spices. As with any food or beverage purchase, reading the ingredients or nutritional content will help you educate yourself and know what you are putting in your body. 38

caringvoice.org • Spring 2016 • Advocacy and awareness

Help support CVCâ&#x20AC;&#x2122;s Community By donating or subscribing you can help keep Community circulating. Make a tax-deductible donation of your choice by mailing a check payable to Caring Voice Coalition, or subscribe to Community for just $10 a year and have it delivered straight to your doorstep. Donate or subscribe by using the enclosed envelope or visit us online at caringvoice.org. Caring Voice Coalition, Inc. 8249 Meadowbridge Road, Mechanicsville, VA 23116

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

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

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals • Social Security Disability • Patient Education