COMMUNITY Magazine, Summer 2013 - The Healthy Eating Issue by Caring Voice Coalition

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

Healthy

Summer Eating

Fresh, Fun Food & Drink

Super Recipes

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COMMUNITY

Summer 2013

10 30

5 Community Editor’s Letter 6 CVC President’s Letter 7 Readers’ Comments

Summer Healthy Eating Guide 10 Cooking for a Cure 8

Acclaimed chef and restaurateur Susan Feniger describes her personal connection to the Scleroderma Research Foundation and serves up a delicious green corn tamales recipe.

Cool Summer

CVC has whipped up a host of healthy recipes that refresh, from strawberry avocado salad to mint berry infused water.

Gluten-Free Gusto

Celiac disease and gluten intolerance don’t have to quash your appetite! How to get the gluten-free meals you need.

16 Ease of Life

26 Newsmaker Q & A

Ed Kriesel’s alpha-1 antitrypsin deficiency prompted life-changing and life-saving decisions.

How much pillow time do you need? Sleep expert Emerson Wickwire explains how sleep studies can help get to the root of fatigue.

20 Lung Transplants in the U.S.

28 On Your Behalf

Community presents facts and figures about lung transplants and pulmonary hypertension.

22 Patient Association Profile Narcolepsy Network Executive Director Eveline Honig, M.D. describes the organization’s genesis.

25 Legal Corner Are doctors’ referrals sending you all over town? CVC Health Care Attorney Kristin A. M. Lough explains why Stark Law might be prompting your physicians to do so.

Starting October 1, 2013, Americans will be able to buy health insurance through the Affordable Care Act’s Health Insurance Exchanges. CVC Health Care Attorney Stephanie Posuniak outlines how patient navigators can help.

30 In Your Words When both of Mary Hurley’s sons were born with chronic granulomatous disease, she wanted to know more. Since forming the Chronic Granulomatous Disease Association in 1984, Hurley has dedicated her life to spreading awareness of the disease.

Staf f

Publishers

Editor in Chief

Consulting Editor

Artistic Director

Pamela Harris pharris@caringvoice.org Samantha Harris sharris@caringvoice.org

Eva Leonard 888.267.1440, ext. 105 eleonard@caringvoice.org

Alex Withrow 888.267.1440

Taylor Scott 888.267.1440, ext. 117 tscott@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.

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

Graphic Design & Illustration Anthony Nesossis 888.267.1440, ext. 174 anesossis@caringvoice.org Please recycle this issue.

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Community Editor’s Letter Alex Withrow

Writing about friends is hard. I have a few rules when writing a profile, the most important being to do that person’s story justice. If they feel well represented, then I’m satisfied. But writing about friends heightens the pressure and forces you to really dig deep.

I met Ed Kriesel nearly two years ago, and we’ve been fast friends ever since. Although our relationship has consisted mostly of far-too-sparse encounters at work-related events, we’ve developed a rapport of casual friends. Buddies, even. So when I decided to tell his story in the pages of this magazine, my initial excitement was quickly met with nervousness. Like almost everyone we feature in Community magazine, Ed has had it tough. Diagnosed with alpha-1 antitrypsin deficiency five years ago, Ed has spent his time since educating himself and others about the disease. He’s an honorable man, one I am very proud to call my friend. We know that our previous issue was a bit heavy. It wasn’t our intention to do so, but the issue developed this way organically. However, the responses we’ve received have been unanimously enthusiastic, for which our staff owes you, our readers, a great deal of thanks. We’ve lightened things up a bit for this issue—focusing on the benefits of eating right, staying fit, and taking time to appreciate the things that matter most to you.

Take a moment to get out and enjoy the simple things in life this summer. You deserve it. Keep fighting.

Help Others by Sharing Your Story with CVC

In Your Words Would you like to share the story of your connection to Caring Voice Coalition with others who can learn from your experiences? Visit caringvoice.org and click on "In Your Words."

CVC President’s Letter Pam Harris

While sitting on my deck the other evening, enjoying not only my family’s wonderful company, but also the warm, setting sun, I realized how blessed I really am. A tiny hummingbird hovered over a flower, ducks quacked and splashed in the water, and dragonflies flitted about overhead as we enjoyed a funny story about my granddaughter, Abigail. The only thing that could have made the moment more perfect? If someone had bottled it to be savored at a later date, or made into a perfume that when worn would evoke that feeling again. No doubt, you’ve heard the adage, “The best things in life are free.” It’s so true. Life is constantly filled with beautiful, simple pleasures that we never really anticipate, but always seem to take great happiness in. I’m sure you can see where I’m going with this—the question is, “What are some of your simple pleasures in life?” Here are a few I thought of to help you think about yours.

Laugh. E.E. Cummings once said, “The most wasted of all days is one without laughter.” How very true. Never be too busy to laugh, or too serious to smile. Instead, surround yourself with fun people, and don’t get caught up in your own sense of importance. Your facial expression is a window into how you feel. Smiling freely throughout the day may just be enough to keep your positive mood flowing all day long.

Relax Outdoors on a Sunny Day. Imagine yourself as you relax, stretched out in a lawn chair, the sun warming your skin and a light breeze keeping the temperature comfortable. Birds are chirping merrily in the trees behind you—pure relaxation and enjoyment! Take a Break. A decent break doesn’t mean zoning out in front of the TV, or spending hours on the internet. It means setting some time aside and making it special. As a thank-you to yourself, give yourself a change of scenery—even if it just means having a picnic in your backyard, or going to your favorite coffee shop. Taking a break that is different from the ordinary things you do each day can do wonders for your heart and soul.

Get in Touch With an Old Friend. Make that call today! If you can’t reach the person by phone, set some time aside to write an email simply to say hello and to catch up.

Celebrate Your Successes. During a normal day, we’re sure to have some minor successes. Perhaps you walked to the mailbox and back today, were able to bathe without help, or even felt well enough to cook your own meal. Why not take a moment to celebrate your success? Go one step further, and encourage others at your local support group. Many are going through the same things that you are, so share your experiences. Reward yourself with a nice break, or just give yourself a mental pat on the back. You deserve it! Keep living your simple pleasures, and have a blessed summer.

caringvoice.org • Summer 2013, The Healthy Eating Issue

The Caregiving Issue

READERS' COMMENTS

We’d like to hear from you!

Your guide to caregiving for a chronic illness C

“I received my first issue of Caring Voice’s Community magazine and found it quite helpful. Thanks very much for all you do.”

are

Cheryl, Vermont ........................................................................... “I don’t know where I’d be without you. You not only care, but your caring voice on the phone is as healing as my medication. You are aptly named. Thank you.” Susan, California ........................................................................... “Thank you for your constant support! Without CVC, I could not enjoy the life that I have! You are all my special angels!”

Volume 2 • Issue 1 • Spring 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.

Scott, North Carolina Email your questions and feedback to magazine@caringvoice.org.

CVC’s CLOUD 9 online portal is the secure, easy way for patients to:

SOCIAL MEDIA

Join the CVC community.

• Apply for or renew financial assistance • Update personal information • Communicate with your CVC care team

Get support. Meet new friends. Share your stories.

To learn more, visit www.caringvoice.org. /CaringVoiceCoalition

@CVCinc

Healthy Summer Eating

10 Cooking for a Cure........

Top Chef Masters star and acclaimed restaurateur Susan Feniger is a founding member of the Scleroderma Research Foundation’s Board of Directors. Feniger describes the foundation’s origins and the inspiration for her involvement.

12 Cool Summer.........................

Community rounds up recipes for fresh, delicious, healthy summer fare, including Susan Feniger’s green corn tamales, top food blogger Heather Hands’ strawberry avocado salad, and tasty gluten-free muffins.

14 Gluten-Free Gusto..........

Scleroderma Foundation Communications Manager Christina Relacion gives tips for living with celiac disease and gluten intolerance. 8

caringvoice.org • Summer 2013, The Healthy Eating Issue

for a

Cure Top Chef Masters star restaurateur Susan Feniger cooks for scleroderma research

have been cooking to find a cure for scleroderma since my dear friend and college roommate, Sharon Monsky, was diagnosed with the disease back in 1982. Sharon really put scleroderma on the map. Before she started the Scleroderma Research Foundation in 1987, there wasn’t much coordinated effort to find a cure. In fact, most doctors hadn’t even heard of scleroderma. While scleroderma is considered a rare disease, it affects hundreds of thousands of people around the world. The word literally means “hard skin,” but the disease is much more. Both debilitating and degenerative, scleroderma is an autoimmune disease that often attacks the internal organs— especially the lungs and kidneys—with life-threatening consequences. Four out of every five patients are women, most between the ages of 30 and 50, but it also affects men and children across all ages and ethnic boundaries. About 25 years ago, Sharon invited me to be a founding board member of the Scleroderma Research Foundation (SRF), an organization devoted exclusively to funding medical research that will find new therapies and a cure, to build awareness and support research for this little-known but surprisingly widespread disease.

caringvoice.org • Summer 2013, The Healthy Eating Issue

Sharon was such an inspirational friend. Even as she suffered through terribly painful and horrific problems with the disease, including amputations and, eventually, a feeding tube, she taught me so much about running a business and making connections that would bring people together. After a 20-year battle, Sharon succumbed to scleroderma in 2002. At the time of her diagnosis, she was given two years to live, so, in my eyes, she beat the odds in every way. She not only surpassed the doctors’ life expectations, but also set up what is now America’s leading nonprofit investor in a cure. The Scleroderma Research Foundation awards more than $1,000,000 in grants annually to promising research taking place at many of the most respected institutions in the world, including Dartmouth, Harvard, UC San Francisco, and Stanford, Sharon’s alma mater. Thanks to Sharon’s vision and an incredibly talented group of people, the SRF assembled a team of some of the brightest minds in science to help solve the scleroderma problem. These are brilliant scientists not just in terms of scleroderma, but in fields all across the medical spectrum—from pulmonology and vascular biology to genetics and molecular medicine. I still miss Sharon; she was truly a remarkable woman. She met with two U.S. presidents and testified before Congress to fight for more funds and awareness for this disease. My commitment comes from her driving passion to help patients, and I continue both in her memory and in honor of those still fighting the good fight. Due to the esophageal problems that often go hand-in-hand with scleroderma, patients must adhere to some pretty serious dietary restrictions. Sharon loved to eat, and, obviously, I love to cook, so I often found myself preparing more than a few dozen extra of my famous green corn tamales when Sharon visited the restaurant in Los Angeles so she could take them back home to Santa Barbara. It was one of her favorite recipes. Gone are the simple days of making extra tamales for Sharon. To build awareness and help raise money to support research, Sharon and I started the event “Cool ComedyHot Cuisine” at my first restaurant way

back in the day, and it has continued to grow from there. Throughout the foundation’s 25-year history, we have hosted a number of these fundraisers, featuring some of the biggest names in entertainment, particularly comedy, including Robin Williams, Jerry Seinfeld, Jon Stewart, and Jay Leno. Bob Saget is on the board of the Scleroderma Research Foundation with me. He lost his sister to scleroderma. Bob has been unbelievable and so generous. Scleroderma is one of those things that, the more I talk about, the more I see how many lives it has touched. It’s amazing that, for such a rare disease, everyone seems to know someone who has it. “Cool Comedy-Hot Cuisine” has come a long way—now we also hold this event in L.A., San Francisco, and New York. Recently, with Bob’s help, we’ve expanded our event to include a musical component. John Mayer did a 30-minute acoustic set for us in L.A. recently, alongside incredible comedy. The lead singer of Train performed one year, as did Counting Crows and Sheryl Crow, but we’ve mainly kept it a comedy event with fantastic food, based on the menus from my restaurants Border Grill and STREET. There currently is no cure for scleroderma, but with the collective energy of people who realize they can make a difference, the Scleroderma Research Foundation continues to fight, with a research program that will have a profound impact for patients who live with this disease each day. My friend Sharon was an inspiration up until the day she died, and, in her memory, I will continue to cook for scleroderma research until a cure is found. She made me realize how lucky I am in my life, so I continue to work hard to hopefully find a cure for this horrific disease. To this day, I think of Sharon every time I make green corn tamales, and I hope that you’ll enjoy them as much as she did. If you’d like to help me in supporting the Scleroderma Research Foundation or would like more information, visit them online at www.SRFcure.org or call 1-800-441-CURE.

Green Corn Tamales Makes 10 to 12 tamales, or 6 servings

10 ears corn 2 tablespoons unsalted butter ½ teaspoon salt ¼ teaspoon freshly ground black pepper 1 pinch sugar, if necessary ½ cup heavy cream ½ teaspoon baking powder ½ cup hominy grits Salsa fresca, for serving Sour cream, for serving Remove the corn husks by trimming off both ends of the cobs, trying to keep the husks whole. Place the largest husks in a pot of hot water and set aside to soak. To make the stuffing: Working over a bowl, run the point of a sharp knife down the center of each row of kernels, and then scrape with the dull side to remove the kernels. Melt the butter in a large skillet over moderate heat. Add the corn and its juices, the salt, pepper, the sugar if the corn isn’t sweet and the cream and simmer until the mixture thickens, 5 to 8 minutes. Set aside to cool. Then stir in the baking powder and grits and reserve in the refrigerator. Drain the corn husks on paper towels. Make ties for the tamales by cutting a few of the husks into strips. To stuff the tamales, overlap 2 or 3 husks and spread about 3 tablespoons of corn filling down the center. Fold over the sides and then the ends to enclose the filling. Tie with a corn husk string. Repeat with the remaining filling and additional corn husks. In a steamer or a pot fitted with a rack, make a bed for the tamales with the remaining corn husks. Add the tamales and steam over low heat for 1 hour. Remove from the steamer and let rest 10 minutes. Serve hot with the salsa fresca and sour cream. Copyright © 2013, Mary Sue Milliken and Susan Feniger, www.bordergrill.com Mary Sue Milliken and Susan Feniger are co-chef/ owners of Border Grill restaurants in Las Vegas Santa Monica, and Los Angeles, and of gourmet taco truck Border Grill Truck. They’re also known as Food Network’s Too Hot Tamales, and most recently from Bravo’s Top Chef Masters.

Cool Summer Simple and Sweet Gluten-Free Muffins

These flourless muffins are simple to make, with easyto-find ingredients. You can serve them plain, or with a variety of toppings. The possibilities are endless! 1 cup maple-flavored almond butter (You can use any type of nut butter, such as peanut butter, cashew butter, sunflower seed butter, etc.) 2 medium-size bananas; the more brown spots, the sweeter the muffins 2 large eggs 1 tsp. vanilla 2 tbsp. of raw honey, or other sweeteners such as maple syrup ½ tsp. baking soda 1 tsp. apple cider vinegar 1 tsp. cinnamon You can top these muffins with just about anything: blueberries, dried cranberries, dehydrated unsweetened coconut, raisins, dark chocolate chips, flaxseed, cinnamon sugar, apple butter, honey, or other toppings of your choice. Preheat oven to 400° F. Blend all ingredients together with a blender, food processor, or electric mixer until well mixed. Pour batter into greased muffin tins, mini-muffin tins, or cupcake liners. Add toppings of your choice to each muffin, gently stirring into each cup. Cook full-size muffins for 15 minutes. Cook mini-muffins for only 10 minutes.

The Garden Grazer's Balsamic Green Bean Salad For the dressing 2 tbsp. balsamic vinegar 2 tbsp. lemon juice 2 tbsp. olive oil 1-2 cloves garlic, minced Salt/pepper

1 lb. green beans 1 cup cherry tomatoes ½ small red onion Feta cheese

Make the dressing in a small bowl. Whisk together all dressing ingredients. Trim ends off green beans and rinse. Steam (or boil) for about 3-4 minutes until crisp-tender. In a colander, rinse well with cold water to stop cooking, then pat dry. Cut green beans into 1- to 2-inch pieces. Dice red onion and halve cherry tomatoes. Place onion and green beans in a bowl. Drizzle dressing over top, and toss to coat. Cover and refrigerate for at least an hour to marinate. When ready to serve, add in tomatoes and feta, and lightly toss. View more recipes at www.thegardengrazer.com.

Infused Water Each recipe makes one two-quart pitcher.

Cool Citrus Infused Water ½ large orange, sliced ½ large lime, sliced ½ large lemon, sliced ½ gallon of water Combine sliced citrus into pitcher. Pour water over citrus fruits. Refrigerate for at least two hours. Garnish with a lime wedge and serve over ice.

Strawberry Citrus Mint Water 1 cup strawberries, halved 2-3 fresh mint leaves 1 medium lime, sliced ½ gallon of water Combine sliced strawberries, limes, and mint leaves into pitcher. Pour water over ingredients. Refrigerate for at least two hours. Serve over ice.

Very Berry Mint Water Refreshing Cucumber Lemon Water ½ medium cucumber, sliced 1 large lemon, sliced ½ gallon of water

1 cup blueberries 1 cup strawberries cut in halves 2-3 fresh mint leaves ½ gallon water

Combine sliced cucumber and lemon into pitcher. Pour water over cucumber and lemons. Refrigerate for at least two hours. Garnish with lemon wedge, serve over ice.

Combine berries and mint leaves into pitcher. Pour water over berries and mint leaves. Refrigerate for at least two hours. Serve over ice, garnished with a sprig of mint.

Heather Hands’ Strawberry Avocado Salad Makes 4 salads 4 cups baby spinach 1 avocado, diced 2 cups strawberries, halved 2-3 shallots, sliced ½ cup olive oil

¼ cup lime juice 1 tbsp. sugar 2 tbsp. Dijon mustard ½ tsp. salt cracked pepper ¼ cup sliced almonds

In a large serving bowl, add the spinach, and top with avocado, strawberries, and shallots. In a small jar with a lid, combine the olive oil, lime juice, sugar, mustard, salt, and pepper. Cover and shake. Drizzle the dressing over the salad, and sprinkle on the almonds. Copyright © Flourishing Foodie 2010–2013. Heather Hands is a Seattle, WA-based registered dietician whose blog www.flourishingfoodie.com focuses on recipes that use fresh, local ingredients and require minimal effort. Among Hands’ accolades, The Huffington Post named her among its 10 favorite food bloggers for June 2013.

GLUTEN-FREE

Gusto

Christina Relacion offers tips on living with celiac disease and gluten intolerance. If you’ve noticed a recent surge in the popularity of gluten-free products and menus, there’s a good reason. Gluten awareness has soared since a 2003 study, led by the University of Maryland Center for Celiac Research in

NON-CELIAC GLUTEN SENSITIVITY If your celiac disease blood tests are negative, you may have nonceliac gluten sensitivity, or gluten intolerance. You may experience the symptoms of celiac disease, yet not show the intestinal damage that is seen with it.

Six times more Americans have non-celiac gluten sensitivity than celiac disease, according to the National Foundation for Celiac Awareness.

caringvoice.org • Summer 2013, The Healthy Eating Issue

Baltimore, found that one in every 133 Americans may have celiac disease. According to a January 2013 study by the global information company, the NPD Group, 30 percent of U.S. adults want to avoid gluten in their diets. Celiac disease is an autoimmune disorder, not an allergy. The condition occurs when a person eats gluten, a protein commonly found in all forms of wheat (durum, semolina, spelt, kamut, etc.), oats, rye, or barley. Gluten damages the lining of the small intestine, rendering it unable to properly absorb nutrients from proteins, carbohydrates, and fats. This can lead to malabsorption and an increased risk of long-term effects. Celiac disease has been associated with autoimmune disorders, including Type 1 diabetes, lupus, scleroderma, rheumatoid arthritis, and Sjögren syndrome. Some classic symptoms of celiac disease include abdominal cramping, distention and bloating of the gut, chronic diarrhea or constipation, unexplained anemia, and weight loss or gain, even with a large appetite. Other symptoms include fatigue, depression, lack of mental focus and clarity (often described as “brain fog”) and bone or joint pain. A blood test is generally used to screen for celiac disease, or the antibodies for gluten. Some individuals may not test positive for the antibodies, but still have symptoms. An endoscopy will confirm if you have celiac disease and any small intestine damage.

Demand for Gluten-Free Menus Grows

As people living with the autoimmune disease scleroderma have become more conscious of diet, event planners for the Scleroderma Foundation’s annual National Patient Education Conference have seen attendee requests for gluten-free meals rise. “We have definitely observed people being more aware of the types of foods they’re putting into their bodies, especially those that can potentially trigger an autoimmune response,” said Kerri Connolly, the organization’s lead conference organizer.

TODAY’S SPECIALS

By the Numbers: Celiac Disease & Gluten-Free Diets

• 3 million Americans have celiac disease • 85 percent of American with celiac disease are undiagnosed • 0 pharmaceutical treatments for celiac disease

• 29 percent of American adults say they want to cut down on the gluten they consume

• $6.6 billion expected estimate of gluten-free product sales in the U.S. by 2017

Source: Alex’s Gluten-Free Spots

Tips for a Restrictive Diet

If you’re following a gluten-free diet (or any other restrictive diet), here are some ways to make life a little easier:

Eating Out

You don’t have to skip eating out if you have celiac disease. Many restaurants now offer gluten-free menus. Check the restaurant’s website, or notify the manager that you have a dietary concern before your visit. This is a great time to ask questions about the restaurant’s food preparation techniques. Some individuals also bring their own condiments, such as gluten-free soy sauce or salad dressing, to restaurants.

Special Events

Menus for special events like weddings and conferences are often created well in advance. Guests should notify the event planner of dietary concerns beforehand. If you’re at the event, tell a server or someone from the facility about your restrictions. “Communication is key. Never hesitate to ask questions or make a request. Your positive experience and feedback is more important than anything,” said Ryan Lovelace, senior event manager for the Hilton Austin, in Austin, Texas.

Check Labels Thoroughly

Gluten can hide in everything from salad dressings and

soy sauce to lipstick and mouthwash. Be sure to read ingredient labels carefully to see if gluten is listed.

Keep a Food Diary

If you notice symptoms when you eat certain foods, jot them down. Keeping a food log can help you determine if you experience bloating, pain, or other symptoms after eating food containing gluten. When you notice a pattern, you can begin to substitute foods.

Be Loud About It

Don’t be afraid to speak up and tell people that you can’t eat gluten or another food. Your health comes first! Consider wearing a medical alert bracelet that indicates your condition. Parents of children with celiac disease can check out Allermates (www.allermates.com), bracelets that identify children with food allergies or issues. Each bracelet is embossed with a character that represents a specific allergy or health issue, such as “P. Nutty” (peanuts), “Professor Wheatley” (wheat-gluten) and others.

Christina Relacion is communications manager at the Scleroderma Foundation’s national office in metro Boston. The organization helps patients and their families cope with the disease through support programs, physician referrals and educational information. Learn more at www.scleroderma.org. 15

Ease

caringvoice.org â&#x20AC;˘ Summer 2013, The Healthy Eating Issue

of Life One man’s motivation for treating his alpha-1 Alex Withrow reports.

f there’s one thing I’ve learned in writing about chronic illnesses, it’s that no two stories are alike. The notion of pain—its causes, effects, and its devastation—may be somewhat universal, but how pain is handled depends entirely on the person who is experiencing it. Ed Kriesel has dealt with his fair share of pain. Five years ago, he was training for a sprint triathlon, working a steady job, caring for two teenage kids—a dedicated and healthy family man. But when he was diagnosed with alpha-1 antitrypsin deficiency, Ed’s whole world changed. He’s spent the past five years fighting the disease that will stay with him. He’s struggled for truth, had to move away from his family, and literally been forced to ask himself: “What makes it worth it?” But this isn’t a story about hardship. It’s a story of a man overcome before overcoming; down but not out. It’s a story about the power of the fight, and how the most significant motivations are often those closest to you. “I’ve always lived a very active lifestyle,” Ed recently told me over the phone. “Constantly working out and exercising—bike

riding, racquetball, and hiking. I started training for a sprint triathlon, and I needed to work on the running and swimming aspects of it. I started experiencing shortness of breath, so I went to the doctor, who gave me a prescription and wished me well.” However, his shortness of breath continued to worsen. “I kept going back to the doctor and insisting that something wasn’t right, and he kept insisting that I was fine,” Ed said. “It was as if he didn’t believe me. He finally told me I had exercise-induced asthma, and gave me an inhaler that didn’t do anything for me.” Ed spent nine months going back to his doctor, adamant that something was wrong, and insistent that, whatever he had, it was seriously affecting everything he did. “I finally saw a pulmonologist, who did a round of tests. A few weeks later, she called and said she had good news and bad news. The good news was that she knew what was wrong; the bad news was that it was alpha-1 antitrypsin deficiency.” CONTINUED ON PAGE 18

Ed’s first thought after being diagnosed with alpha-1 was not unlike the initial reaction of many when they’re first diagnosed with a rare chronic illness. “‘What’s that?’ I wondered. The name of the illness sounded like a fraternity to me; I had no idea what to expect. The pulmonologist went on to explain that alpha-1 is essentially genetic emphysema. My mom died of emphysema, and I remember watching her go through a long, miserable death. [She spent] years on oxygen, with no quality of life. It was horrible. That was the vision that popped into my head right away. The doctor said without treatment, I had five years to live.” Fortunately for Ed, treatments were available, but they came with conditions. One was that he understand that his

the affliction, and the absence of a cure. He told them what he could, and he let them do with it what they wanted. “I have two kids, and six older siblings, so there were a lot of conversations about whether they should get tested,” he said. “Most of them did get tested for the disease, but some have refused, and that’s their choice.” After he spoke with his family, Ed sought to learn more about the disease. He reached beyond the internet and started seeing more doctors. He discovered the various alpha-1 patient associations, attended support groups, and, most importantly, met people who were experiencing a similar pain. Ed cites his decision to attend the National Education Conference hosted by the Alpha-1 Association as a huge turning point. It was there that he met

so hard? And that is a real adjustment to get used to.” As years went by, Ed began considering a radical change he knew would better his health. Born and raised in Minnesota, he had a family, a career, and a life there. But with each passing year, the unforgiving winters grew increasingly difficult. He knew that a warmer climate would greatly benefit his health, but also knew what that meant giving up. “Any motivation I’ve had to do the treatments and to sustain my quality of life has come from my kids,” Ed said. “I want to be here for their graduations, weddings, and the birth of their kids. My motivation is to be here for them, and I knew that if I stayed in Minnesota, there was a good chance that my life would be shortened. Breathing

In the midst of his research, Ed revelation: he had to tell his family drug treatment methods only slowed his disease; they did not cure it. The second was that, in order to be a good patient, he had to be an educated one. He was given his treatment options and told to go home and research them. He did just that, exhaustively scouring the internet, finding plenty of useful, intimidating information. He didn’t know exactly what he was looking for, but knew he had to look, mining the endless and often merciless text of the online world. “The internet is a wonderful resource,” Ed said. “But it’s also very overwhelming. There’s so much there, and some of it isn’t accurate, or it’s exaggerated. You really have to be careful in what you’re discovering.” Alpha-1 is a genetic disease. If you have the gene that makes you susceptible to the disease, there’s often a very good chance some of your family members and/or children have it as well. So Ed gathered his family and told them what he knew. He told them about alpha-1’s genetic tendencies, about the cruelty of 18

people who understood and cared. “Thanks to Caring Voice Coalition, I was given an opportunity to meet and network with many other people with and without alpha-1. “That conference was so eyeopening,” he said. “People understood. They listened and offered helpful tips. Those people taught me to be my own advocate; not to wait for help, but rather to provoke it. And that is so important. You have to surround yourself with encouraging people. “One thing I learned quickly— through doctors, other patients, and my own experience—is with alpha-1, you have to learn a new way to breathe,” he said. “I don’t mean figuratively; I mean you actually have to learn to breathe differently. You have to plan ahead. Are there stairs where I’m going? Will I be walking uphill? Societywise, it’s very difficult as well. Alpha-1 is a disorder people cannot see. You can’t look at me and tell I’m sick. So it can often confuse people—why is he walking so slowly, why is he breathing

caringvoice.org • Summer 2013, The Healthy Eating Issue

in cold air is distressing to my lungs, and after being hospitalized for several winters in a row, I began considering a change in climate.” For two years now he has lived in Phoenix, Arizona—far from home, but beneficial to his health. “The disease won’t get better; it doesn’t matter where I live,” he said. “However, living in a warmer climate makes the day-to-day activities like walking to work and the gym and buying groceries much easier. It’s all about adjusting your life to what suits you. “I discussed my decision to move with my kids a lot. Had they told me, ‘Dad, I don’t want you to move so far,’ then I never would have done it. And without Skype, texting, and those types of communication, I don’t know if I would’ve. But they understand that it’s for my health and that it makes living easier.” If the first major debate surrounding alpha-1 is whether to get tested for the gene, the second must be the consideration of receiving a lung

Ed Kriesel, Kriesel’s daughter, Brianna, and son, Blake

was hit with perhaps his fiercest about his illness. transplant. It’s a debate on which Ed personally goes back and forth, one that he notices presents just as many pros as cons. “I’m fairly young, active, have never smoked a day in my life—I’m in relatively good health, except for alpha-1, and that makes me a viable transplant candidate,” he said. “If I get a lung transplant, then I can go back to living my life. I can get back on track and start over with a lot of the things I want to do. “But, in talking to my doctor, I’ve gotten the other perspective on transplants. He’s seen the transplants that aren’t always successful. He’s seen the ones who don’t make it. We’ve talked about it a great deal, and we agree that a lung transplant should be treated as a last resort. It’s not a guarantee. Stats speak to that.” Ed says that, right now, he’s willing to live with what he has and adjust to the demands of alpha-1. If the time comes

when he can’t carry out his day-to-day functions, then he says he’ll consider a transplant. But for now, he’s going to keep doing what he’s doing. Much of what he does is inform versions of his former self. Seeking out those who have been newly diagnosed with alpha-1, he offers advice, makes friendships, and stresses the importance of advocating. To do so, he helps run a quarterly support group in Minnesota, and attends, as often as time permits, monthly support groups in Arizona. He’s a staple at the annual Alpha-1 Conference, and an unwavering resource for the newly diagnosed. “It’s my mission to make people aware of this disease,” he said. “How do we get information to people who are newly diagnosed, and what exactly should we be telling them?” One thing every patient should know, Ed stresses, is that how you handle the information and take care of yourself can dramatically affect how much time

you have and your quality of life. As our conversation came to a close, Ed told me he was flying home to Minnesota later that day to celebrate his children’s birthdays. His son was turning 21, and his daughter was turning 18. I remarked how unique it was that his only children were celebrating two milestones so closely to one other. I realized that he lives for those milestones. Despite being separated by thousands of miles, he is determined to share such important events with two of the people who mean the most to him. This July will mark Ed’s fifth year of living with alpha-1. That’s the length of time his doctor told him he’d live if he wasn’t dedicated to his treatment. With his current level of dedication, it seems likely that he’ll be sharing milestones with his children for many years to come.

Lung Transplants

IN T HE U.S.

Pulmonar y Fac ts and Figures

Did You Know? A SNEEZE TRAVELS ...

A COUGH TRAVELS ...

The surface area of the lungs is roughly the same size as a tennis court.

On June 11, 1963, James D. Hardy, M.D., former University of Mississippi Medical Center professor and chair surgery, performed the f irst human lung transplant. Photo courtesy of the University of Mississippi Medical Center.

Lung Transplant Waiting Times

B ased o n O P T N dat a as of A pril 1 2, 2013

AVER AGE WAITING TIMES FOR REGIS TR ATIONS LIS TED : 2003 â&#x20AC;&#x201C; 2004

AGES

Under 1 Year 1-5 Years

6-10 Years

11-17 Years 18-34 Years 35-49 Years 50-64 Years 65 + 0

200

400

DAY S

600

800

1000

1200

1400

1600

1800

2000

T h e O r g a n P r o c u r e m e n t a n d Tr a n s p l a n t a t i o n N e t w o r k (O P T N ) w e b s i t e f e a t u r e s c o m p r e h e n s i v e i n f o r m a t i o n a b o u t t r a n s p l a n t a t i o n : w w w. o p t n .t r a n s p l a n t . h r s a . g o v.

Pulmonary Hypertension (PH) Pulmonar y hyper tension is continuous high blood pressure in the pulmonar y ar ter y. The aver age blood pressure in a normal pulmonar y ar ter y is about 14 mmHg when the person is res ting. In PH, blood pressure is usually greater than 25 mmHg. PH is a serious condition for which there are benef icial treatments, but no cure.

THERE ARE T WO T YPES OF PH Primar y pulmonar y hyper tension

Secondar y pulmonar y hyper tension

(PPH)

(SPH)

Inherited or occurs for no known reason.

C aused by or occurs because of another condition, including chronic hear t or lung disease, blood clots in the lungs, or a disease like scleroderma.

Lung Transplant Survival Rates

1 Year Post Transplant

84% ALIVE

A lpha-1 P atients

91 Alive 75%

ALIVE

Primar y P ulm o nar y H yper tensio n P atients

5 Years Post Transplant

48%

45%

A lpha-1 P atients

Primar y P ulm o nar y H yper tensio n P atients

ALIVE

Should You or Shouldn’t You?

1 3 5 Rejection Rate After

Rejection Rate After

ALIVE

Per formed : 19 97 – 20 0 4 B ased o n O P T N dat a as of June 2 1, 2013

Rejection Rate After

1 8%

25%

Dec ea s ed

82%

50% Living

50%

Dec ea s ed

65%

Living

One Year

Per formed : 19 97 – 20 0 4 B ased o n O P T N dat a as of A pril 5, 2013

Living

Three Years

Five Years

Patient Association Profile

NARCOLEPSY N E T W O R K

Eveline Honig, M.D., M.P.H., Executive Director, Narcolepsy Network Q: How did Narcolepsy Network come to be? A: Narcolepsy Network emerged from the vision of 13 women from self-help groups across the U.S. Most of these women formed a task force, and in January 1986, they met in New Jersey. That April, the Narcolepsy Network was born, and in May, the first annual meeting was held in New Jersey. Q: I’ve recently been diagnosed with narcolepsy. What do I do? A: Become a member of Narcolepsy Network, and we can help with many issues and give you the support you need. Make sure you have a good doctor for all your medical needs—we can help with everything else. Q: What does Narcolepsy Network do to help those with narcolepsy? A: We help you understand your narcolepsy. We also help you find ways to cope, so that you can live a normal life—one that can include school, work, and relationships. We have a website, support online and in-person, newsletters, brochures, a huge annual conference, and more. Q: What is the meaning behind Narcolepsy Network’s logo? A: The logo depicts wakefulness invading sleep, and sleep invading wakefulness. Q: Tell us about the Narcolepsy Network Conference. A: The yearly Narcolepsy Network conference is an enormous success—many people find friends and make friendships for life. They often meet others with narcolepsy for the first time and realize that they’re not alone, and that many of their issues are shared. The conference makes family members and friends aware that narcolepsy is a very serious disorder, affecting every aspect of life. Many attendees learn 22

caringvoice.org • Summer 2013, The Healthy Eating Issue

about medications, the newest research, and ways to cope. For those who return every year, it can also be a way to help others with the disorder—they’re happy that they can do something in return. The conference is also very important for spreading awareness via the press. For more information about Narcolepsy Network, visit www.narcolepsynetwork.org or call toll-free (888) 292-6522.

5070 50-70 MILLION U.S. ADULTS

have sleep or wakefulness disorders11

RESEARCH INDICATES THAT SLEEPING LESS THAN

7-8 HOURS

each night, irregular sleep schedules, or poor quality sleep has been associated with many health risks2

SOURCES: 1 http://www.cdc.gov/features/dssleep/ 2 1993 National Commission on Sleep Disorders Research Report to Congress Source: National Heart, Lung, and Blood Institute, National Institutes of Health

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The Captioning Telephone is intended for use by people with hearing loss. In purchasing a Captioning Telephone, you acknowledge that it will be used by someone who cannot hear well over a traditional phone.

How will

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Caring Voice Coalition? Charitable giving begins at any time in oneâ&#x20AC;&#x2122;s life. Consider where your assets go and include Caring Voice Coalition in your estate planning. Contributions, including gifts and monies, help to ensure that CVC continues to provide financial assistance and additional resources to aid in the journey of our patients. We can help you explore a variety of possibilities for making a significant gift to Caring Voice Coalition. Simply contact Rebecca App, Director of Finance, at 888-267-1440, ext. 106 or finance@caringvoice.org.

REFERRAL

RULES

Kristin A. M. Lough explains how the law behind physician referrals protects patients At times it seems as though my doctor refers me to several offices throughout my hometown if I need tests. While this practice appears to be arbitrary, there may be a basis in federal law for her decisions to do so. Named after its initial sponsor, Congressman Pete Stark from California, Stark Law limits physician referrals to entities with which the physician has a financial relationship. This law applies only to referrals for patients who have Medicare and Medicaid, but I wonder if physicians make it a practice to avoid these types of referrals for all patients, regardless of the insurance they have, so as not to accidentally violate Stark Law. The referrals doctors cannot make are those for designated health services, or DHS. These services are any or all of the following: clinical laboratory services; physical therapy; occupational therapy; outpatient speech-language pathology services; radiology and certain other imaging services; radiation therapy services and supplies; durable medical equipment and supplies; parenteral and enteral nutrients, equipment, and supplies; prosthetics, orthotics, prosthetic devices and supplies; home health services; outpatient prescription drugs; and inpatient and outpatient hospital services. As with any regulation of this size and scope, there are a number of exceptions. Services provided to a patient in one of several prepaid health plans are excluded from Stark restrictions; these include some HMOs and other prepaid plans. Services provided at academic medical centers may also be excluded. Finally, preventive services like screening tests, immunizations and vaccines, and glasses or contacts following cataract surgery may also be excluded from these regulations. The financial relationship barring these referrals can be direct or indirect, and can be on behalf of the physician or immediate family member. The relationship may include ownership, an investment interest, or simply a compensation arrangement between the physician and entity. Ownership or interest in a subsidiary company is not ownership or interest in a parent company or other subsidiaries, unless that subsidiary owns an interest in the parent or other

LEGAL CORNER CVC Health Care Attorney

Kristin Lough uses her background in finance and the law to help CVC patients. As part of the Appeals and Disability team, Kristin helps patients with insurance appeals and with applying for Social Security Disability. subsidiaries. A physician’s financial relationship is not shared by group practice members or staff unless they are actual shareholders, he directs them to make the referral, or he controls the referrals of his group. This means if Dr. Smith has a financial relationship with Company A, but only refers patients to its Subsidiary A1, the referral does not violate Stark Law. However, if Subsidiary A1 owns shares in Company A, Dr. Smith cannot refer a patient to Company A or Subsidiary A1. If Dr. Smith chooses to refer to Subsidiary A2, however, he has not violated Stark Law if Subsidiary A2 does not have an ownership interest in Company A or Subsidiary A1. Financial relationships are not always created when a physician and hospital work together. Among others, financial relationships are not created when someone merely rents office space or equipment. There is no financial relationship created with a bona fide employment relationship made in good faith without a plan to deceive. Stark Law also lays out the penalties for its violation. If a hospital or other entity receives an improper referral, it cannot bill to Medicare, Medicaid or another payer for the services provided. That way, the physician cannot refer the patient to the hospital or entity, and the hospital or entity cannot bill for services to a referred patient. There is an exception to this limitation only if the entity did not know of “and did not act in reckless disregard or deliberate ignorance of” evidence of a relationship between the physician and entity. The claim must otherwise comply with all applicable laws. This exception protects a hospital or entity that is an unwitting participant in fraudulent referrals. A case decided in early May will subject a hospital system in South Carolina to more than $40 million in penalties and improperly paid claims to Medicare based on Stark Law violations. After what I have learned about Stark Law, I understand why my doctor sends me all over town. Do you have legal questions? Send them to magazine@caringvoice.org, and we’ll answer them here.

Nothing in this article is legal advice or counsel. The information contained in the “Legal Corner” may not reflect recent legal developments or decisions. Your visit to the “Legal Corner” or reading its articles does not create an attorney-client relationship between you and Caring Voice Coalition, Inc.

Newsmaker

Emerson Wickwire, Ph.D., Sleep Medicine Program Director, Pulmonary Disease and Critical Care Associates, Columbia, Maryland

How much sleep does an average person need per night? There is no single, correct answer other than, “Almost certainly more than you’re getting right now.” Scientific findings are remarkably consistent; healthy adult humans function best on about eight hours of sleep, but there’s a range. Each of us has a unique sleep number that is typically between 7.5 and 8.5 hours, so I tell patients, “I have no idea how much sleep your body needs, and I’m pretty sure you don’t either!” Then we track their sleep, experiment, and let their bodies tell us how much they need. Determining your sleep number is an exciting and liberating experience.

If you think you’re sleeping well at night, but are often fatigued during the day, what should you do?

Fatigue can have different causes, such as hormones and nutrition, and these are important to evaluate. But too often, doctors miss the leading cause of daytime fatigue—poor quality or insufficient sleep. Ask yourself, “Have I had trouble sleeping? How is my sleep quality? Am I getting enough sleep?” Many of my patients have long commutes, which invariably means they get insufficient sleep. One of the most powerful behavioral experiments we often run together is simply to extend sleep time. It’s more difficult than it sounds to allow eight hours for sleep each night for two weeks, but the improvements are often astounding. Should undergoing a sleep study be viewed as a last resort?

An overnight sleep study, also called a polysomnogram, measures many physiologic functions during the night, including heart rate, blood oxygen saturation, airflow, respiratory effort, muscle activity, and EEG (electrical activity in the brain). It provides an incredible amount of useful data. 26

Unfortunately, many patients are misinformed about the procedure, or feel uncomfortable sleeping in an unfamiliar space, attached to electrodes and wires. As sleep specialists, we want to educate patients about what the procedure is, why it’s important, and how to prepare. In the past several years, home sleep testing (HST) has also emerged as a viable alternative for many patients with straightforward obstructive sleep apnea (OSA). HST’s advantages for the patient can be increased convenience and reduced cost. However, HST is not appropriate for all patients, and because it captures so much less information than a traditional in-lab study, it can only evaluate OSA. Negative results require a referral for an in-lab study. I’ve just been diagnosed with OSA. What do I do now?

First, know that you are not alone. OSA is more common than asthma, but unfortunately over 80 percent of patients remain undiagnosed and untreated. The good news is that highly effective treatments exist. Three factors are necessary for success with sleep apnea. First, you must understand what OSA is. Second, you must understand how OSA is treated. And finally, you must make a conscious choice, because treating OSA involves changes such as adjusting to PAP therapy, or oral appliance, and losing weight. Chances are, someone you know suffers from OSA, even though you may not know it. Ask friends, family, or co-workers about their experiences with OSA. Having a good support network can be invaluable.

How often are sleep disorders related to another condition? Because sleep is such a vital biologic process and related to virtually every bodily function, disturbed sleep can be both a cause and consequence of

caringvoice.org • Summer 2013, The Caregiving Issue

numerous problems. For example, well-documented relationships exist between disturbed sleep and obesity, diabetes, high blood pressure, heart attack, stroke, depression, anxiety, and even premature death.

This doesn’t mean that trouble sleeping is caused by these problems—sleep and medical or psychiatric disorders can co-exist. In fact, the most common sleep disorder—chronic insomnia, or difficulty falling asleep, staying asleep, or waking too early—can quickly take on a life of its own, so that it persists even after the initial condition has improved.

What side effects can sleep medications cause?

All medications have side effects. Even the safest sleeping pills have been associated with increased risk for motor vehicle crash, falls, impaired cognition and neurocognitive performance, acting out behaviors during sleep (including driving), and impaired next-day function. Earlier this year, the FDA lowered the recommended dose of zolpidem, the active compound found in several sleep medications, due to safety concerns and risk for next-day accidents. Although they can bring short-term relief, sleeping pills typically aren’t the most effective way to treat chronic insomnia. In fact, a very specific, non-drug approach called cognitivebehavioral treatment for insomnia, or CBT-I, has repeatedly been shown to be at least as effective as sleeping pills in the short-term, with gains significantly better maintained over time. Both the National Institutes of Health and the American Academy of Sleep Medicine recommend CBT-I as a first line treatment for insomnia.

You can find a behavioral sleep medicine specialist through the Society for Behavioral Sleep Medicine (www.behavioralsleep.org).

Join

COMMUNITY

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

Donate to Community.

Community magazine would not be possible without your contributions.

Your donations help fund Caring Voice Coalition’s quarterly Community magazine. We’re dedicated to providing supportive content in Community and on the CVC website, both for patients living with rare diseases, and for their caregivers. Please consider donating to Caring Voice Coalition. We greatly appreciate your generosity.

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Your Behalf By Stephanie L. Posuniak, CVC Health Care Attorney

CVC Health Care Attorney Stephanie Posuniak answers frequently asked questions about patient navigators. With the Affordable Care Act (ACA) on the horizon and the subsequent addition of new health care industry resources and participants, patients may consider the use of patient navigators to guide them through the waters of health care reform.

Who is a Patient Navigator? The term “patient navigator” refers to an individual (or entity) who advocates on behalf of a patient within the health care system. This can include providing education, resources, and emotional support, as well as facilitating communication between patient and provider. Think of patient navigators as first mates: They want to help you understand the health care process, get better treatment, and potentially save money. Most patient navigators do not charge a fee for their services. The definition is broad because almost anyone can act as a patient navigator. Patient navigators have existed as long as patients have. However, the first documented patient navigator program developed in 1990, when Harold Freeman, M.D., created a patient navigator system for a New York City subpopulation. Since then, studies of patient navigation reflect its effectiveness in improving treatment outcomes and timeliness of diagnosis.

How do Patient Navigators and the ACA Relate? Patient navigators and the ACA share basic principles: educating patients, reaching out to those who have less access to health care, identifying financial resources, and reducing costs. This, combined with the sheer complexity of the ACA, resulted in the creation of the Patient Navigator Program, which brought a new meaning to patient navigation.

What is the Patient Navigator Program? Created by the Department of Health and Human Services in 2012, the Patient Navigator Program allows unofficial navigators to apply for a grant and become an official navigator for their state’s Exchange (or marketplace). State governments will provide most of the funding for the grants because federal funds disbursed to establish the Exchange may not be used to fund the Navigator Program. 28

caringvoice.org • Summer 2013, The Healthy Eating Issue

What Will Official Patient Navigators Do? Their job description includes three main categories:

Help individuals apply for insurance through the Exchange;

Maintain neutrality (e.g. they cannot prefer one insurance company over others); and

Educate patients on the Exchange.

Do I Need a Patient Navigator? Here are some instances when a patient navigator might be useful:

You are applying for insurance through the Exchange and are unfamiliar with the internet or health insurance terminology;

You have a chronic condition;

You have difficulty communicating with health care providers;

You have difficulty accessing health care providers;

You need help finding insurance and do not know where to begin; or

Your household income fluctuates dramatically and continuously.

How Will the Navigator Assist Me? Have your basic health care needs ready for discussion, because the navigator will first complete an intake of your situation. The navigator may ask you questions related to the following: insurance status, health conditions, medications, doctors, marital status, and household income. If you need help finding insurance through the Exchange, the navigator will shop on the Exchange on your behalf. She/he will select a few of the most advantageous options and explain the plan-specific benefits of each. After thoroughly educating you on the plans, the navigator will ask you to choose which plan you like best. Thereafter, the navigator will assist you with the application, award notice, and any necessary follow-up. If your household income fluctuates, the navigator may report the changes on your behalf to the applicable agency or organization. In this scenario, navigators are

A CLOSER LOOK How Can I Be Sure That A Patient Navigator Is Legitimate?

PATIENT R NAVIGATO

ome organizations or individuals may pose as legitimate patient navigators when, in fact, they intend to defraud you. How can you tell the difference between a real patient advocate and a con artist? For official navigators (who assist with the Exchange), the first place to go is your state’s Exchange website, which should have a list of approved official navigators. If you do not have access to the internet, contact the call center for your state’s Exchange. For unofficial navigators (who are not directly associated with the Exchange), you can also consult your local Better Business Bureau’s website to verify credibility. If you do not have access to the internet, here are four questions to ask before commissioning a patient navigator:

Who initiated the contact? Patient navigators rarely cold call individuals; therefore, be wary of external phone calls indicating that you must obtain a “national medical card” or the like.

Is the navigator willing to send me additional information about his/her organization? Legitimate businesses understand the need for more information and will be happy to comply. A navigator who does not want to send information is suspect.

Will the navigator let me call him/her back? A patient navigator will not decline this request. If the person tries to threaten or pressure you, something is wrong.

Has my doctor heard of this organization? Most health care providers are aware of well-known patient advocacy organizations.

particularly beneficial because they report changes and identify insurance alternatives if your income disqualifies you from your current policy.

Where Can I Find a Patient Navigator? You can find an official navigator on your state’s Exchange website, which will be up and running by October 1, 2013. From there, depending on the website, you should be able to find a navigator’s contact information by indicating that you need help finding insurance. You can also opt to use an unofficial navigator, which simply means an individual (or entity) who is not receiving a grant to help users with the Exchanges. You can find their information by searching the internet, using a phone book, or by asking friends and family.

What Type of Navigator Should I Choose? Remember, the difference between an official and unofficial navigator is the former receives a grant from the government to assist individuals with Exchanges, while the latter does not. Both official and unofficial navigators may assist with Exchanges or other types of health care needs. Ask the navigator about the areas in which he/she can help you.

Recap As you traverse the new channels of health care reform, consider seeking guidance from someone who knows the ropes. Remember that all state and federal Exchange websites are scheduled to be up by October 1, 2013 and will offer help finding a navigator. If you have additional questions, feel free to contact me at magazine@caringvoice.org. Anchors away!

Disclaimer: Nothing in this article is legal advice. By reading this article, you understand that there is no attorney-client relationship created between you and Caring Voice Coalition, Inc.

with Mary Hurley Mary Hurley founded the Chronic Granulomatous Disease Association (CGDA) after sending out a CGDrelated questionnaire to doctors, patients, and parents of patients. Mary’s sons were both born with CGD, and she wanted to know more. After learning a great deal from her questionnaire, Mary formed the CGDA in 1984, and has since dedicated her life to spreading awareness about the disease.

he history of my life with CGD goes back more than 30 years. I was seven months pregnant when my husband, Alan, and I moved to Houston waiting for the arrival of our first child. Finally, our dear Erik, a beautiful baby, was born in 1977. When Erik was born, I noticed that he was not feeding well, and that his hands and feet looked puffy. We took him to the pediatrician, who noticed a small pustule on his leg and took a little of the fluid to culture. We learned that the infecting germ was Serratia marcescens, which is usually not found in infants. Erik was admitted to a local community hospital and diagnosed with osteomyelitis, a bone infection in his hands and feet. Coincidentally, three immunologists attended our church. One of them had a hunch that because his pustule had cultured Serratia marcescens, Erik might have an immunity disease. A few days after taking some blood from Erik, she called and told us that he had chronic granulomatous disease (CGD). I had never heard of CGD—I couldn’t even pronounce it! I began reading about CGD and learned that onethird of the patients die before the age of seven. We lived in fear. Because Erik was so ill in the hospital, we thought he would die at any minute. After about 30 days in the hospital, he finally recovered. Soon afterwards, my husband was relocated to Virginia, so we moved and lived there for the next four years. During this time, I became pregnant with our second child. The night Stephen was born, Alan took his cord blood to the National Institutes of Health (NIH) in Maryland to have it tested. We learned that Stephen also had CGD. Both children had health problems growing up. They had bouts of gastric outlet obstruction, which causes

caringvoice.org • Summer 2013, The Healthy Eating Issue

Erik, Alan, Mary, and Stephen Hurley

vomiting that gradually gets worse over time. Stephen also had granulomas of both the urinary tract and esophagus a number of times. Later, while Erik was in middle and high school, his lungs kept collapsing. We are not sure if this was related to his CGD. At one point his doctor said there was nothing more that he could do. I asked him to do one more CT scan, and very fortunately, they were able to find and stop the leak causing Erik's lungs to collapse. Erik never had a lot of the CGD-related illnesses, such as fungal pneumonia, liver abscesses or enlarged lymph nodes. In that way he was fortunate. Both sons continued on to college. Erik earned a degree in graphic design, and Stephen in physics and computer science. Erik continued to have difficulty with his lungs, as many CGD patients do. In 2009, Erik and Stephen went to an art museum with friends. Almost immediately, Erik became ill. Shortly thereafter, another friend also became ill. Then Stephen became ill. I went over to help them, and I became ill. Erik’s condition was the worst, and he was admitted to the hospital and then taken to the ICU, where he spent four months before he passed away in February 2010. We learned that he had contracted the swine flu. So many perfectly healthy people died during that time. Stephen says it’s like half of him is gone. He and Erik did everything together. It is a great loss and makes us want to work even harder for a cure for CGD. Stephen has really been well since 1998—close to 14 years. He’s working, and enjoying lots of friends, especially at his church. He’s faithful with his medicines, including his interferon gamma. He’s waiting for a cure and does the best he can to stay healthy. For more information, visit www.cgdassociation.org

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

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

• Patient Assistance Program • Syringe Disposal Program

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

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

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We’re Here to Help The Diseases We Support

Who We Are

• Congenital Factor XIII Deficiency

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

• Infantile Spasms

How We Help

• Alpha-1 Antitrypsin Deficiency

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

• Pulmonary Hypertension

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

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals

• Social Security Disability • Patient Education

Visit Us Online www.caringvoice.org

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