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Line Dancing

Posted on by Charlie

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

One of the world’s most celebrated and influential modern artists, Paul Klee (pronounced “klay”), drew profound inspiration from the art of children. Because Klee believed that children created the purest art, he worked to make his art more child-like.

And he took very creative steps to do so. To reduce the impact of his artistic education on his art, he sometimes switched hands or closed his eyes when he drew, and he also used methods such as scraping layers of paint from his work to reveal the colors underneath. Klee also collected and studied the drawings of his son, Felix, and those of other children.

Two Heads, 1932. Paul Klee Swiss, 1879-1940. © 2013 Artists Rights Society (ARS), New York / VG Bild-Kunst, Bonn

(Above) Two Heads, 1932. Paul Klee. Swiss, 1879-1940. Encaustic, oil (?) and pencil on canvas. 31-7/8 x 33-1/2 in. (81.0 x 85.1 cm). Norton Simon Museum, The Blue Four Galka Scheyer Collection. P.1953.066 © 2013 Artists Rights Society (ARS), New York / VG Bild-Kunst, Bonn.

The influence of children’s art on his work, with its simple, bold lines, and vivid colors, is clear in his cheeky response to art critics of the time: “Those gentlemen, the critics, often say that my pictures resemble the scribbles and messes of children. I hope they do!”

Klee’s observation, “A line is a dot that went for a walk,” reflects his boundless sense of playfulness and imagination. He was prolific, producing more than ten thousand works of art, more than two thousand of which he created following the appearance of symptoms that would later be diagnosed as scleroderma. His desire to continually simplify his technique would serve him in his later years, as the symptoms of scleroderma began to limit his movement.

Born in 1879 near Bern, Switzerland, into a family of musicians, Klee first studied to become a violinist. He initially drew only in black and white, but a trip to Tunisia in 1914 awakened his sense of color and light. Klee also used elements of music, letters, numbers, and hieroglyphic-like symbols in his work, and was intrigued by the art of the mentally ill.

In 1906, he married the pianist Lili Stumpf, and the couple moved to Munich. In 1916, he joined the German army, painting camouflage on planes. Klee lectured at the Bauhaus from 1921 to 1931 and at the Art Academy in Dusseldorf until the Nazis dismissed him in 1933, when he refused to pledge allegiance to the party, and the Gestapo searched his home. He then fled Nazi Germany for Switzerland.

The Nazis declared Klee’s art “degenerate,” as they did most Modern art, including the works of Pablo Picasso, Joan Miró, and Salvador Dali, which they deemed counter to Nazi ideals. The Nazis seized more than a hundred of Klee’s works from public collections. Their so-called “Degenerate Art” exhibition in 1937 in Munich, meant to ridicule art they considered “un-German,” included 17 works by Klee.

After fleeing to Switzerland, Klee had his first exhibition in London and was visited by well-known artists, including Picasso, and Wassily Kandinsky. His star rose in the United States, where he earned kudos from artists Diego Rivera and Frida Kahlo, as well as from art dealers, collectors, and museum directors.

A line is a dot that went for a walk ...In 1936, the first symptoms of Klee’s scleroderma—heart irregularities, fatigue, weakness, chronic pneumonia, hardening of the skin, and gastrointestinal problems—became pronounced. Although he produced only 25 works of art that year, he rebounded as the disease stabilized. He also found new ways to create, using different styles and materials, creating 264 works the following year and more than twelve hundred pieces in 1939.

Klee’s scleroderma was likely diffuse systemic sclerosis, the most serious form of the disease. (There were no treatments for it at that time, and the condition went undiagnosed until after his death.) His art provided refuge and a way to express his struggles with the illness.

In his book, “Paul Klee and His Illness” (Karger, 2010), the author, Hans Suter, M.D., noted, “For Klee, drawing and painting were his personal form of meditation. It seems to me that this ability to sink into deep thought while working provided an excellent opportunity to get anxiety and distress out of his system.”

As Klee’s scleroderma progressed, it prevented him from doing two of the things he most enjoyed: hiking and playing the violin. However, he could still paint and draw, producing larger, simpler works, and using coarser materials such as burlap. Klee’s creative responses to the new limitations on his mobility and dexterity might have inspired his declaration: “He has found his style when he cannot do otherwise.”

During 1940, the year Klee died of heart failure from severe scleroderma at the age of 60, he created 366 works of art. Seventy-three years later, his art continues to inspire admirers, influencing not only visual artists, but also contemporary musicians all over the world, with its vibrant sense of rhythm, movement, imagination, and emotion.

The Norton Simon Museum in Pasadena, California, has more than fifty works by Klee, including paintings, drawings and prints, and one painting by Klee’s son, Felix, made when he was 12. Leah Lehmbeck, curator for the museum, said, “Very early on Klee recognized the value of children’s art and children’s drawings. He saw it as a sort of beginning of art.”

“Klee believed that creativity resided within. True things were drawn on from nature, and nothing was ever completely abstract. But the purest things were those that came from one’s self, and children are the best examples of that. They aren’t burdened by anything yet.

“There is also a really nice quote of how he saw himself. He considered himself ‘a child of this earth, yet also a child of the universe; the offspring of a star among stars.’”

Paul Klee Collections and Exhibitions
Paul Klee, 1879-1940, Fire at Full Moon, 1933. Museum Folkwang, Essen, Germany.The following museums have Paul Klee collections and/or exhibitions of his work scheduled. If you’re planning on visiting a museum to see its Klee collection, check to confirm that it will be on display, as art is often rotated. You can also view Klee’s works on many of the museum websites below.

The exhibition “Paul Klee: Making Visible” is on view at the Tate Modern from October 16, 2013 through March 9, 2014.

Baltimore Museum of ArtGuggenheim New YorkMetropolitan Museum of ArtNational Gallery of ArtNorton Simon MuseumPhiladelphia Museum of ArtTate ModernZentrum Paul Klee

(Above) Fire at Full Moon, 1933. Paul Klee 1879-1940. Museum Folkwang, Essen, Germany.

The Paul Klee Center & Children's Museum Creaviva

Creaviva Open Studio, Zentrum Paul Klee. Photograph Miriam Loertscher © Creaviva

(Above) Creaviva Open Studio, Zentrum Paul Klee. Photograph: Miriam Loertscher. © Creaviva

In 2005, the Paul Klee Center (Zentrum Paul Klee) opened on the outskirts of Bern, Switzerland, designed by Italian architect Renzo Piano to look like a trio of rolling glass-and-steel hills, housing close to four thousand works by Klee. Among the works on display are nearly 50 hand puppets Klee made for his son, Felix. One of the center’s most popular areas is its Children’s Museum, Kindermuseum Creaviva.

Kindermuseum Creaviva Project Manager Sara Stocker said, “Paul Klee was not only a painter, musician and writer; he was also an excellent teacher. The idea for a Children’s Museum is to give children, teenagers and adults access to art and culture, and allow them to discover their own creativity on the basis of Paul Klee’s works.

“Creaviva’s workshops are its foundation. Children and adults can work in the Open Studio under the guidance of an art instructor, and participants can take home artwork they have created in the workshops. Creaviva’s ‘Klee Without Barriers’ offers workshops tailored to individual needs for people with disabilities.The interactive exhibition in Creaviva’s loft invites participation in playful discussions about art. It’s all about imagination, curiosity, the exciting journeys, and the joy that’s felt in one’s creation.

“The Children’s Museum Creaviva promotes Klee’s playful, experimental, humorous approach to art. ‘Creaviva’ was formed from the Latin words for ‘create’ and ‘lively.’ This can be translated as ‘a lively place of creativity.’ Long live creativity!” —Translation by Sabrina I. Parmelee


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In Your Words: Elaine Kelley

Posted on by CVCAdmin

Sixteen-year-old Elaine Kelley’s narcolepsy symptoms first appeared in July 2011, shortly before she started her freshman year of high school in Tulsa, Oklahoma.

“The first thing I noticed was the cataplexy,” she recalls. “It came on very suddenly. Laughing would make me very weak, and I thought that was strange. Then it just progressively got worse.

“I told my mom about it. Then I also started sleeping a lot during the day. We thought that was strange too.”

From from left to right: Elaine Kelley's mother, Vickie Kelley; brother, Joe Kelley; father, Marshall Kelley; and Elaine.

The cataplexy attacks first occurred at home and at her cousin’s house. Then, Elaine says, “It happened big time when we were shopping for school shoes, and I was yelling for my mom, asking her to come look.” Fortunately, Elaine wasn’t hurt when she collapsed in the shoe store, but she says, “That’s when we knew it was serious.

“One night I had a cataplexy attack, and my dad saw it for the first time. He wanted to take me to the hospital. We were just going to go to an urgent care center, but it was closed.

“The next day, we called my pediatrician, and she wanted me to check into the hospital. I checked in the next day and went through a 24-hour EKG and an EEG and spent the night there.  They couldn’t find anything. They had a recording of me having cataplexy and still couldn’t figure it out, because they had never seen it before.

“They thought it was epilepsy, anemia, or something neurological, but everything came back normal. They might have said that it could be narcolepsy, but they never said ‘cataplexy.’

Elaine explains how she ended up essentially diagnosing herself.  “I started googling ‘laughing and falling,’ and that’s when I came across cataplexy. So I looked into that because there was a story about a lady who had it.

“We called my pediatrician; she referred us to a sleep specialist, and I took the sleep test. I was lucky to figure it out pretty quickly, after a few months of the symptoms, because school had started.

Elaine did have cataplexy episodes at school, but luckily, she was in the bathroom with friends when they occurred.  “All my friends knew about it and were supportive, which was nice,” she recalls.

She describes her initial attempts to prevent the cataplexy on her own. “It took a lot of self-control to try to not let it happen. I would clench my fists really tight if I felt it coming on and tighten my body so I wouldn’t lose muscle control. I noticed that it did help a little.

“But once I got the right medication and figured all that out, the cataplexy has never gone back to the way it was when it was at its worst.

“I still have daytime sleepiness, but a 30-minute nap once a day helps that. I still notice that when I laugh, sometimes I lose control of my facial muscles a little bit.

“I’m very lucky. I have a strong support system with my friends and family. I play soccer. I like to babysit. I like spending time with my friends.

“I want to go to college. I really love history, so I want to major in that. My reach school is Brown; that’s what I’m shooting for. If not, I’ll probably go to the University of Oklahoma or the University of Kansas—somewhere close to home.

From left to right: Elaine Kelley; brother, Joe; and mother, Vickie.

“When I first was diagnosed, my dad sent out an email letting all my teachers know. They were all really curious. There was actually another kid who graduated last year who had narcolepsy, and I was able to talk to him about it.

“People ask me about it a lot. I have no problems explaining it.

There was a rumor at school that when I get excited, I fall asleep. That’s what some kids twisted cataplexy into. I set everyone straight.

Elaine says there are a couple of things she’d like people to know about narcolepsy: “I’d like to make it clear that I don’t fall asleep standing up, because a lot of people ask me that.”

She also says that if there’s one thing she’d like people to be aware of, it’s to be thankful to have a sleep cycle. “Because I sure do miss that.”

For those teens and children who’ve been diagnosed with narcolepsy, she adds, “Don’t be ashamed or embarrassed that you have it. I struggled with that. But if you’re confident about it, it makes it a lot easier.” —EL

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CVC – 10 Years of Saving Lives

Posted on by CVCAdmin

A quick look at some of the people and the passion behind Caring Voice Coalition, and their experiences over the past ten years at CVC.


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Patient Navigator Update

Posted on by CVCAdmin

On July 12, 2013, the Department of Health and Human Services issued a final rule announcing new requirements for “Navigators” and other advocates who will help patients use the Health Insurance Exchanges.

First, the final rule added another resource to health care reform, “certified application counselors,” which each Exchange must offer. Second, the final rule explained the differing standards for Navigators and certified application counselors.

Certified application counselors are individuals (or entities) who will engage in many of the same duties as Navigators. Like Navigators, certified application counselors will provide information regarding and facilitate enrollment in health plans offered through the Exchanges. The main difference between a Navigator and a certified application counselor is the former has a broader range of duties than the latter.

The states or Exchanges may require Navigators complete a certification process; however, as the name suggests, certified application counselors must be certified according to their Exchange’s requirements.

Similarly, training may very between Navigators and application counselors. For example, Navigator training must include: information on qualified health plan options, insurance affordability programs, eligibility, and other government regulations. Conversely, certified application counselors’ training may be more limited simply because they have fewer duties than their Navigator counterparts.

Another difference is Navigators cannot have any conflicts of interest and must maintain a plan for remaining free of such conflicts. Certified application counselors, on the other hand, may have conflicts of interest; although, they must report such conflicts to the consumers they are assisting.

Further, the final rule requires Navigators to provide culturally and linguistically appropriate services (CLAS standards), which include: maintaining knowledge about racial, ethnic and cultural groups in the Navigator’s area, communicating with consumers in their preferred language, and promoting a staff representative of the Navigator’s consumer demographic. Certified application counselors need not comply with CLAS standards.

Despite the differences between Navigators and certified application counselors, the Final Rule compels competence and accountability from both. Overall, the Final Rule reflects an intrinsic goal of health care reform: assuring improved access to health care.

—Stephanie Posuniak, CVC Health Care Attorney

[1] A “Navigator” is an individual (or entity) who receives funds from a federally-facilitated Exchange and state partnership Exchanges. “Non-navigator assistance personnel” are persons (or entities) who receive funds from the federal government to assist with state-based Exchanges. For purposes of this article, this writer will refer to Patient Navigators and non-navigator assistance personnel collectively as “Navigators.”

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Low-Intensity, High-Benefit Exercise and Movement Part 2

Posted on by CVCAdmin


Arriving in the West from India in the late 1800s, yoga is a mind and body health program that more than 20 million Americans now practice.

Yoga Stretch flexibilityYoga’s non-competitive nature, along with its emphasis on breathing, stretching, mindfulness, relaxation, and respecting an individual’s limitations has great appeal for those who need to go slowly. Its benefits may include improvements in:

Because yoga may provide relief of symptoms and increased mobility and flexibility for scleroderma patients, the Scleroderma Foundation has released “Yoga for Scleroderma” a therapeutic video program of yoga poses. The exercises are modified for the physical limitations associated with scleroderma, and all of the poses can be performed while seated or lying down.

To purchase a copy of “Yoga for Scleroderma,” call the Scleroderma Foundation at 800-722-HOPE or go to

When considering practicing yoga, remember:

Wheelchair Exercise and Movement

Wheelchair Tai Chi Qi Gong Yoga


Wheelchair Tai Chi, Qi Gong, and Yoga

Along with yoga, tai chi, and qi gong can also have health benefits for those in wheelchairs.* Wheelchair tai chi was featured in the 2008 Beijing Olympics, but as with yoga and qi gong, you don’t have to be an athlete to do it.

“Wheelchair tai chi can be practiced seated for those needing simple, low-impact, upper-body exercise by integrating wheelchair motion with the gentle, dynamic, flowing movements of tai chi,” said Zibin Guo, a medical anthropologist at the University of Tennessee, Chattanooga, who developed the seated tai chi “13 Postures” program featured at the Olympics.

“It lifts the spirits and gives practitioners a sense of command of space,” said Guo. Wheelchair tai chi has become part of China’s national program to promote health and is gaining in popularity around the world. To see a video of Guo’s seated tai chi program, go to

The National Institutes of Health reports that qi gong may help control blood pressure and psychological health in older adults who are in wheelchairs. To view a video on seated qi gong, go to

Chicago’s Loyola University Health System now offers a wheelchair yoga program to help patients with rehabilitation and healing after surgery and certain medical events. To view a video of the program, go to

To learn more about wheelchair yoga poses, visit

Wheelchair Resistance and Weight Training

Training with elastic resistance bands and light free weights can also benefit those in wheelchairs. Ask your health care provider for recommendations of routines best suited for you.

Wheeling a Manual Wheelchair

Regular daily activities, like wheeling a manual wheelchair, can also improve health. A 2011 study by the University of Tennessee, Knoxville found that a person who uses a manual wheelchair can burn up to 120 calories in half an hour while wheeling at two mph on a flat surface, which is three times as much as someone doing the same in a motorized wheelchair.

Health enhancing benefits can come from “simply wheeling their chair along while taking their dog for a walk,” said coauthor of the study, Professor David R. Bassett Jr. “You can still burn a significant number of calories.”

Remember, when considering a new activity program:

Tai-Chi* (See Part 1 of this story for more information on tai chi and qi gong.)


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Low-Intensity, High-Benefit Exercise and Movement Part 1

Posted on by CVCAdmin

Many believe the “No pain, no gain” exercise mantra, when, in fact, the opposite is true. Regular low-impact, low-intensity exercise, like walking, and slow, gentle, meditative movement practices, like tai chi, can have substantial health benefits including:

Advantages of many of these activities are that they:

If you’re considering starting a new type of activity, make sure to ask your physician about its:

Popular, low-impact, low-intensity, and low-cost (or no-cost) options that can be beneficial include:


It’s easy to underestimate the benefits of walking, but studies have shown that even slow walking can improve health, as can home-based walking exercise programs.

Thirty minutes of slow walking can benefit the elderly and the disabled as much as 30 minutes of more intense exercise can benefit those who are younger, suggests a Harvard University study. And you don’t have to take it outside to benefit. A recent Northwestern University study of nearly 200 participants with peripheral artery disease (PAD) found that a home-based walking program could improve pain-free walking time, physical activity, speed, and endurance.

The National Institute of Health’s Weight-control Information Network website offers info on what to know before you go walking, how to walk safely, stretches for walking, proper form for walking, and a sample daily walking program. For details, go to

Ask your physician if you’d like more information and recommendations on walking and on home-based walking programs.

Meditative Movement Practices

Tai Chi and Qi Gong

Tai-ChiBoth tai chi (pronounced “tai chee”) and qi gong (pronounced “chee gung”) are meditative movement practices that started in China and have become increasingly popular in the U.S. Both involve gentle movement, mental focus, deep breathing, and relaxation.

Both tai chi and qi gong can be adapted to many physical conditions and can also be practiced, sitting, standing, or lying down. Movements are slow and never forced.

Yang-style tai chi (named after Yang Lu-ch’an, the 19th century founder of the style) is the most popular style used in the U.S. Its popularity stems from its physical benefits, such as improved balance, flexibility, strength, and aerobic endurance, and psychosocial benefits, including decreased depression, anxiety, and stress.

A University of Arizona study showed that yang-style tai chi reduced falls among adult stroke survivors, helping them to achieve and maintain balance.  The results were striking: Those practicing tai chi experienced only approximately one-third as many falls as those in other groups.

During the 12-week trial, those in a group of 30 practicing tai chi reported five falls, while those in a usual care group of 28 people reported 15 falls, and those in a group of 31 participating in the SilverSneakers fitness program reported 14 falls.

Tai chi can also increase strength and flexibility, and benefit the immune system, bones, heart, nerves, muscles, and mind, suggests research by Harvard Medical School, which published The Harvard Medical School Guide to Tai Chi this year. The guide features practical tips for integrating tai chi into everyday activities, along with a simplified program, illustrated with more than 50 photographs. (It can be ordered online at

The National Institutes of Health is exploring the benefits of tai chi and qi gong and has produced a video, led by Adeline Ge, M.D., demonstrating and explaining both practices. To view it, go to

Click here to read Part Two of CVC’s story on Low-Intensity, High-Benefit Exercise and Movement, featuring info on yoga, and exercises for those in manual and power wheelchairs.

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Summer Health Tips

Posted on by CVCAdmin

It’s easy to forget to protect yourself from the elements when you’re out enjoying sunny days. This handy checklist will help you remember to shield your skin and eyes, and stay hydrated, even on cold or cloudy days.

The FDA recently updated regulations for sunscreen products and labeling, establishing a standard test for over-the-counter sunscreen products. Products that pass the broad spectrum test and provide protection against both UVB and UVA radiation are allowed to be labeled as “Broad Spectrum.” Use sunscreen with broad spectrum UV protection values of 15 or higher, and use a lip balm with at least 15 SPF. Apply a thick layer of sunscreen 30 minutes in advance of sun exposure. Reapply at least every two hours, and more often if you’re sweating, or in and out of the water. Watch the UV index, and learn to read the UV Index Scale on the EPA’s website  Talk to your doctor about the diseases and medications that can make people more sensitive to sun exposure.

Remember that no sunscreen completely blocks UV radiation, and no sunscreen is waterproof. Using sunscreen does not mean it is safe to spend more time in the sun, advises the EPA. You need additional protection. That includes:

The CDC recommends wearing loose-fitting long-sleeved shirts and long pants made from tightly woven fabric. The best hats for summer protection are wide-brimmed. Avoid straw hats with holes that let sunlight through.
If you wear a baseball cap, also protect your ears and the back of your neck with clothing, or sunscreen with at least SPF 15. Don’t forget to apply sunscreen under bathing suit straps, jewelry, and sunglasses.

Wear sunglasses that offer 99 to 100 percent UV protection against both UVA and UVB rays.
Wear wraparound sunglasses.
Wear sunglasses, even if your contacts have UV protection.
Children should wear real sunglasses with UV protection, not toy sunglasses.

Stay in the shade between 10 a.m. and 4 p.m. daylight savings time (9 a.m. to 3 p.m. standard time), advises the CDC. Like using an umbrella to complement other skin protection? An Emory University School of Medicine study found that black umbrellas were the most effective at blocking the sun. (A travel sun umbrella by Coolibar ( was the study’s big winner, blocking up to 99 percent of UVR rays.)

Adequate Hydration
Infants, children, the elderly, and those with chronic illnesses are at increased risk for dehydration. (For information on the range of dehydration symptoms and the stages of dehydration, go to Remember that water is usually the best choice for staying hydrated. The sugar and stimulants found in many energy drinks accelerate dehydration, as does drinking alcoholic beverages. Energy drinks and alcohol make an especially dangerous combo. Know the difference between energy drinks and sports drinks. While energy drinks stimulate the nervous system, sports drinks rehydrate, and replenish electrolytes. Read labels carefully to know exactly what you’re drinking.

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Recognizing, Avoiding, and Reporting Health Care Scams

Posted on by CVCAdmin

Health care scams are on the rise and can take many forms—in person, over the phone, via mail and online. New government programs have recently been put in place to help prevent, detect, and punish such scams.

However, it’s important to remember that con artists can be very creative in coming up with new ways to defraud their victims, and extremely persuasive, catching even the savviest consumers off-guard.

Here are some common health care scams to look out for, along with tips for protecting your personal information, and reporting health care fraud.

The Affordable Care Act

The Federal Trade Commission, the Better Business Bureau, and AARP warn about scams that claim association with the Affordable Care Act (ACA) and its Health Insurance Marketplace. Scammers have been taking advantage of confusion about health care reform and calling claiming to be government representatives issuing mandatory new national medical cards.

If you get a call from someone purporting to represent Medicare or the government, hang up immediately. Don’t rely on caller ID to correctly identify the caller; con artists can falsify caller ID numbers.

It’s important to know that:

Scammers try to convince you to act now, says Tracey Thomas, Attorney, Division of Marketing Practices, Federal Trade Commission, in order to get your money before you have time to stop and think.

“So remember that date: October 1, 2013. That’s the first time anyone, anywhere can sign up for health insurance through the Health Insurance Marketplace under the Affordable Care Act. Anyone who claims to be able to enroll you sooner is trying to scam you,” advises Thomas. To report anyone who claims to be able to sign you up sooner, go to

For up-to-date information on the Affordable Care Act and the Health Insurance Marketplace, go to:

Other Common Health Care Scams

The Department of Health and Human Services, the Department of Justice, and the FBI warn that scammers are engaging in the following types of health care fraud:

Next week, look for Part Two of “Recognizing, Avoiding, and Reporting Health Care Scams” on We’re here to help!

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Health Care Scams, Part II

Posted on by CVCAdmin

Top Tips from the Experts

With major changes in health care prompted by the Affordable Care Act, it’s easy to get confused. That why it’s more important than ever for patients, providers, and caregivers to know how to recognize health care and health insurance scams. We’ve included tips from experts on combating and reporting fraud, including helpful questions for identifying scams.

In CVC Community magazine’s summer issue, CVC Health Care Attorney Stephanie Posuniak examines the growing health care role of patient navigators in the article “On Your Behalf.” In the article excerpt below, Posuniak outlines ways to help determine whether a patient navigator is legitimate.

How Can I Be Sure a Patient Navigator is Authentic?
Some organizations or individuals may pose as authentic 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 associated with 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 five questions to ask before commissioning a patient navigator:

1) Who initiated the contact? Patient navigators rarely cold call individuals; so, be wary of external phone calls indicating that you must obtain a “national medical card” or the like.
2) Is the navigator willing to send me additional information about its organization?  Legitimate businesses understand the need for more information and will be happy to comply.  A navigator who does not want to send information about itself is suspect.
3) Will the navigator let me call her back? A patient navigator will not decline this request.  If the person tries to threaten or pressure you, something is wrong.
4) Has my doctor heard of this organization? Most health care providers are aware of well-known patient advocacy organizations.

For more on patient navigators, see Posuniak’s “On Your Behalf” in CVC’s Community magazine’s summer issue, out soon.

Preventing Medicare Fraud

To help stop Medicare fraud, the Department of Health and Human Services and the Department of Justice warn you to be suspicious of doctors, health care providers, or suppliers who:

For more information on common scams and identity theft, go to

FBI Tips for Avoiding Health Care Fraud or Health Insurance Fraud

The FBI’s Common Fraud Schemes website
provides information and tips on avoiding some of the most common scams that the FBI investigates, including health care fraud, health insurance fraud and identity theft. The FBI advises:

To report suspected Medicare errors, fraud, or abuse, contact either:

HHS Office of Inspector General

Call: 800-447-8477
TTY: 800-377-4950
Online: Report Fraud Online


Centers for Medicare & Medicaid Services
Call: 800-633-4227
TTY: 877-486-2048

Senior Medicare Patrols:
The Senior Medicare Patrol (SMP) are highly trained volunteers who show Medicare and Medicaid recipients how to protect against, detect, and report fraud, errors, and abuse through outreach, counseling, and education.

For information on the Senior Medicare Patrol, go to

Most Wanted Health Care Fraud Fugitives

The Office of Inspector General (OIG)  is seeking more than 170 fugitives on health care fraud and abuse related charges. Click to view OIG’s Most Wanted Health Care Fugitives, as well as those recently captured.

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In Your Words: Matty Heenan

Posted on by CVCAdmin

In 1997, when I was 49, I got up one morning, showered, and got dressed … almost. I tried to put on my shoes, but found that my feet had swollen too much overnight to fit into any of them. I called my doctor, who thought I was retaining water, and gave me a diuretic. It didn’t help at all.

He referred me to a rheumatologist, which was a good start. Unfortunately, though, the rheumatologist was to retire in three weeks, so he wasn’t too invested in me. He told me that I definitely had some “auto-immune process” going on, which might take several months to sort out, but that the treatment would initially be the same: methotrexate. When I asked what methotrexate was, he replied that it was usually used for cancer, and told me to “take it or leave it.” I decided to leave it, and to tackle the issue holistically.

This led to my second unfortunate event: A doctor I pursued, who had received extensive media coverage, turned out to be a quack. It took me about 18 months to come to grips with the fact that I was slowly getting worse. I was now unable to step off a curb unaided, or to dress myself without assistance.

Dry, darkened, shiny, and tight skin covered my face, arms, hands, and legs up to mid-thigh. My fingers were slightly curled, and I had six finger ulcers on the three longest fingers of each hand, which made using them to do almost anything nearly impossible. Raynaud’s syndrome, one of the most frequent scleroderma symptoms, caused my fingers and feet to turn purple when the temperature changed from cool to warm, or vice versa. I experienced acid reflux so intense that I learned to fall asleep in a recliner every night.  Every joint in my body ached, and it hurt when I got into bed.

I used to teach elementary school. When I first got sick, school had been in session for about three days. I struggled to make it to winter break by taking a sick day every Wednesday, and sleeping (and eating a little) between Tuesday evening and Thursday morning. Every Thursday I would cry as I got ready for school, because I didn’t know how I could make it to the end of the week.

Finally, in February, 1999, I was referred to a great rheumatologist with a background in scleroderma. I walked into her office, and she told me as I was sitting down that I had systemic scleroderma. She started me on (you guessed it) methotrexate, as well as different medications to help relieve reflux symptoms, soften my skin, and ease the pain. I slowly started to improve. I no longer have finger ulcers, and for no apparent reason, my hands stabilized, with very little curvature to my fingers.

Because I have systemic scleroderma, all the extra collagen my body produces has to go somewhere. It goes into a lot of my other body systems—my heart, lungs, skin, and gastrointestinal tract seem to be getting a lot, judging from the assorted problems I’ve dealt with over the ensuing years. One is the facial deformities that can occur as the skin starts to relax. It can cause the lips to almost disappear and small lines to form around the mouth, often referred to as “purse-string mouth.” I’m still surprised when I see a photo of myself, as I only recognize my face through my eyes and nose.

It is estimated that approximately 25 percent of scleroderma patients will develop pulmonary hypertension. I fell into that group. I am fortunate that I am presently able to treat my PH with oral medications. Many of my fellow patients must be hooked up through a subcutaneous line to a pump that they wear 24/7. I pray I won’t ever have to experience that, but only time will tell.

I no longer teach school. My last day was that winter break in 1997. I wanted to continue being productive, so, once I felt a little better, I got a Little Sister in the Big Brother/Big Sister program. I am still in touch with her today. As she got older, I joined an adult literacy program, through which I have taught and mentored a woman from Africa for about eight years now. I am also the support group leader of the pulmonary hypertension group in Tucson, and the co-leader of the scleroderma group. Helping other people makes my struggles more worthwhile.

If you have a story that you’d like to share with CVC, email us at Your words can give support to others and let them know that they’re not alone.

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Be the 1,350th new Like on CVC’s Facebook page

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Be the 1,350th new Like on Caring Voice Coalition’s Facebook page, and win a cool, colorful journal to help you think, create, and record! This premium journal, bound in Italian leatherette, features 256 ruled interior pages, a satin ribbon marker, and magnetic closure.

If you’ve already Liked CVC on Facebook, invite your friends, family, and colleagues to join CVC’s social media community, and one could be the winner!

Join the community and keep connected at!

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June is Scleroderma Awareness Month

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Affecting approximately 300,000 people across the U.S., scleroderma is a chronic connective tissue disease in which the immune system attacks its own body, producing extra collagen. It is painful, often progressive, and can be fatal. Some medications and treatments can help with certain symptoms, but there is no known cure for scleroderma. Symptoms and effects can vary, and diagnosis can be difficult. Early and correct diagnosis by a qualified physician, often a rheumatologist, can help minimize progression and disability. Scleroderma can develop in any age group. It is not contagious.

From the Greek words meaning “hard skin,” scleroderma can cause a thickening and tightening of the skin, and serious damage to internal organs, including the heart, lungs, and kidneys. Early symptoms can include fingers that are very sensitive to cold, change color in response to stress or cold, and that become stiff and swollen, known as Raynaud’s phenomenon. (Although most people with scleroderma have Raynaud’s phenomenon, most people with Raynaud’s phenomenon do not develop scleroderma.)

In its fifteenth year, the Danvers, Mass.-based Scleroderma Foundation, a national nonprofit with 24 chapters and support groups across the country, provides support, education, and research about scleroderma. To boost awareness this spring, The Scleroderma Foundation and its Tri-State Chapter are running a 15-second video on a 520-square-foot digital billboard in Times Square from April 1 through June 30, 2013. Can’t make it to Manhattan? No worries: Click here to view this short, but powerful video.

In the Spring 2013 issue of CVC’s Community magazine, Scleroderma Foundation Communications Manager, Christina Relacion, describes how three women living with scleroderma empowered themselves—as well as their caregivers, friends, and family—through online support and resources: Click here to read their compelling stories and learn more about getting support through social media.


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Help Others by Sharing Your Story with CVC

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Would you like to share your story and how you came to Caring Voice Coalition with others who can learn from your experiences? Continue reading →

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May Is Huntington’s Disease Awareness Month

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Jean Wittie shared her story with us back in November of 2012 for our special edition of Community magazine, In Their Words. Her story detailed how Huntington’s disease has affected her family. Below is her story.

Jean Wittie, directly right of the groom, with members of her family on the Oregon Coast

My husband Frank and I have been married for over 30 years. We have a blended family of seven children, six grand children and five great grandchildren. The two oldest boys are my boys from my first marriage, and they are the ones who have been diagnosed.

Todd is the younger one, he’s 43. He began having some problems – facial twitching and jerking – in 2009. He’d always had problems with his thyroid, and his doctor at the time thought all of Todd’s problems were related to that. The doctor kept raising and raising the medication, until he took Todd completely off it. Nothing worked.

I finally took him to my doctor, who thought he had MS. We went to see a neurologist who ordered an MRI and genetic tests. When the diagnosis came back, it blindsided us. We had no idea that there was anything like this anywhere.

After Todd was diagnosed, his doctor ordered testing for Todd’s older brother, Dale. Dale had some symptoms, but they weren’t very pronounced, so he thought he was home free. But just before Christmas 2010, his diagnosis came back as positive for HD.

So I set out to learn as much as I could about Huntington’s. I found the UC San Diego Autism Center of Excellence and they were so encouraging. They invited Todd and myself to their research symposium, where we met researchers, officials with the Huntington’s Disease Society of America, and families with HD. It was all very encouraging.

As a result of that symposium, we were finally able to get both Todd and Dale on a medication that helped restore their quality of life.

Dale lives in his own home with his adult son, daughter and her family. Dale’s daughter and her family moved back to Oregon to be closer to Dale and help out.

Unfortunately, Dale’s daughter was diagnosed positive in March. Dale’s son, and Todd’s two daughters have not yet been tested. Todd’s two girls live in Alaska and want to be tested but they are working their way through the state’s medical system now. Dale’s son is practicing avoidance behavior – he’ll get to it, but for right now, he does not want to be tested.

My husband Frank has always been supportive of the boys and of me. He’s the one that keeps reminding me to be patient when I need to be.

What is Huntington's Disease sidebarI still work and I go to school, so Todd is at home alone during the day. I make meals that will be easy for him to eat, he takes care of the yard, feeds the dogs… both my husband and I want Todd to have as normal a life while he still can.

Our extended family is huge, and Todd and Dale have all of the love and support our family can offer. Various family members have attended the conferences, support groups, walks – everyone in the family is there for Todd and Dale.

I truly feel that if I stay positive and persevere, then there will be a cure. We all have to have the courage and the hope to keep going. You have to keep fighting.

So that’s my story.

This article first appeared in the winter edition of Caring Voice Community magazine.

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CVC One of the Best Nonprofits to Work for Two Years in a Row

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The NonProfit Times logoSeveral months ago Caring Voice Coalition participated in a survey rating the best nonprofits to work for. It is with pride and pleasure that we would like to announce that CVC has been ranked in the top 50 for the second year in a row.

This year CVC ranked #33 out of 50 overall organizations and #18 in the Medium Organization category. The NonProfit Times, who conducted the survey, included an article listing the results of the survey (click here to view the full article).

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