Real World Health Care Blog

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.:

Charlie Barron

Charlie Barron

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

********************************************************************************

A Note from Our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

*******************************************************************************

Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found … (read full article)

Health Care Innovation is a Game That Everyone Can Play

Why?  Because everyone has been a patient, experienced a pain point, identified an unmet need, or had an idea to improve the health care experience.  However, one of the really challenging parts of health care innovation is that, while there are a lot of respectable ideas out there, the vast … (read full article)

Millennials are Shaping the Future of Health Apps

What comes to mind when you think of millennials? Are you reminded of stereotypes about this generation’s apathy? Self-serving nature? Tendency to be too self-involved? While the validity of these stereotypes is debatable, what you may not associate with millennials is their role as leaders of our nation’s health and … (read full article)

“Go for Six”: Raising Awareness about Gout and Elevated Uric Acid Levels

Though gout is extremely common — affecting even more Americans than Rheumatoid Arthritis — it is a disease that gets very little attention. While gout incidence is on the rise in the U.S., research from the Gout & Uric Acid Education Society has shown that only 10 percent of gout … (read full article)

The Caregiver Act and AARP’s CARE Act Aim to Reduce Readmissions

Hospitals nationwide have gone to great lengths in an effort to reduce readmissions and improve patient quality. However, despite these concerted efforts, hospitals continue to incur fines from Medicare for excessive rates of patient readmissions, which are projected to total more than $428 million. Even worse, readmissions cost patients a … (read full article)

Record Number of Medical Students Commit to “D.O. More”

Nicholas A. Kaup, an osteopathic medical student at the Kansas City University of Medicine and Biosciences College of Osteopathic Medicine (KCU-COM), is passionate about making life better for patients by one day becoming a doctor of osteopathic medicine (DO). He explains, “Osteopathic medicine encompasses what it truly means to be … (read full article)

Many Insured Americans Not Getting the Healthcare They Need

Last month, FamiliesUSA.org issued a sobering report about the disconnect between having medical insurance and receiving the healthcare one needs. The report concluded that for many Americans with non-group coverage (as opposed to having insurance from an employer or a public coverage program), deductibles and other out-of-pocket costs are prohibitively … (read full article)

Hep, hep, hooray!

Editor’s Note: As we come to the conclusion of Hepatitis Awareness Month, we are pleased to share with our readers a column written by Gene Weingarten of the Washington Post. Gene Weingarten is a Pulitzer Prize-winning journalist and writes “Below the Beltway,” a weekly humor column that is nationally syndicated. … (read full article)

Awareness and Assistance Are Crucial to Fighting Hepatitis C

May is Hepatitis Awareness Month, a time when the healthcare and patient advocacy communities rally support for the millions of Americans afflicted with the disease, including an estimated 3.2 million suffering from chronic Hepatitis C (also known as HCV). Over time, chronic Hepatitis C can cause serious health problems, including … (read full article)