A 21st Century Journalism Project

Trapped by Physical Limits

In Organizations on April 9, 2012 at 11:42 am


Bill lives with Multiple Sclerosis (MS) and although his real name isn’t Bill, his MS is. He is a middle aged, northwestern Pennsylvania man, who has worked in the service industry all of his life. The physical limitations of his disease make functioning daily more difficult. The unpredictability of his MS threatens his ability to work and remain financially independent.

The financial instability that Bill faces has only been exacerbated by the chronic and progressive disease of MS. His health care is inadequate and has been pushed to its limits. Bill has a $4,000 deductible, faces high co-pays and out of pocket expenses. He cannot financially facilitate all of the costs of his MS, but he is able to get by with help from The National MS Society’s (NMSS) supplements that lower the cost of Bill’s MS, provides resources, programs and services.

Bill and his MS are unique, but his story is not uncommon. Nearly 350,000 Americans live with Multiple Sclerosis (MS) with symptoms ranging from tingling, numbness, coordination and speech disturbances, paralysis, blindness, cognitive impairment and more. More than 24,000 Pennsylvanians suffer from MS. They face physical restrictions that intrinsically create a cycle of medical bills, deductibles, maxed out health plans, debt and more.

The financial breakdown for the National MS Society Western PA Chapter

The National MS Society (NMSS) is a collective of passionate individuals who support people living with MS. Through a nationwide network of local chapters, the NMSS is able to help each person address the challenges of living with MS. The NMSS funds cutting-edge research and provides programs and services that help people with MS and their families. In 2010 alone, the NMSS devoted $159 million to programs and services that assisted more than a million people. Of those people, many can be classified as a member of the working poor.

Nearly 43 million Americans are considered members of the working poor. One third of those Americans also lives with serious health limitations. The overwhelming inadequacies of the health care system often leave the financial burden falling solely on the individual, crippling them financially.

According to Jay Zagorsky, author of Health and the Working Poor, those with health limitations are twice as likely to become mired in poverty, and most live below the poverty line for five or more years. Additionally, more than a quarter of a million Americans who live in poverty also live with a disability. In 2010, 8.8 million Americans aged 18 to 64 reported having a disability. The median income of these households was $25,000, which is less than half of the income for people without a disability.

A great number of people living with MS are able to maintain financial stability. MS does not ensure a future among the working poor. Yet, of those living with MS and struggling financially, the consequences could be dire. Often the physical restrictions only exacerbate the symptoms of working and living in poverty.

NMSS Western PA Logo

The Western Pennsylvania Chapter of The National MS Society serves nearly 7,500 people living with MS in 26 counties of Western Pennsylvania. They are committed to enhancing the quality of life for people living with MS by recognizing the financial challenges that many face. Nearly half a million dollars a year is dedicated to helping members obtain needed items or services through a financial assistance program. The program assists Western Pennsylvania Chapter members who have MS when maxed-out health care, debt, bills leave them without the necessities their disease requires of them. The NMSS is able to provide medical equipment and repairs, ramps, home modifications, auto modifications, air conditioners, short-term home care, crisis assistance and more when the individual does not have the financial means to do so themselves.

The average cost of living with MS In America is $69,000 per year.

The National MS Society, Western Pennsylvania Chapter, Erie Branch serves those living with MS in Erie, Crawford, Warren and McKean County. Mary Lee Jackson is in charge of the programs and services for the region. For the average Northwestern Pennsylvanian, the cost of MS is $69,000 per year, while they average only $22,644 in income per year, Jackson said.

“We provided $380,000 in financial assistance to our clients last year,” Jackson explained. “$65,000 was given for emergency situations like co-pays and shut-off notices alone.”

As the Information and Community Specialist for the Erie Branch office of the NMSS, she works with clients and their employers, insurers, doctors, and care takers to help them continue to work and remain independent while living MS.

“With the unpredictability of MS, a person is not sure that tomorrow will be as good or as bad as today. It can become unnerving to say the least,” Jackson said. “It makes a person take a hard look at the whole picture.”

As health care costs skyrocket while the quality of service consistently declines, Jackson has noted a significant increase in the number of requests to financially subsidize medical needs. She suspects the 2011 disenrollment of more than 41,000 Pennsylvanians from the affordable adultBasic health insurance to be a contributing factor.

“With the fall of the Adult Basic Insurance program came many more requests, especially for co-pays.” Jackson said. “I’ve seen a significantly higher number of financial assistance requests for doctor visits, medications and more because people are experiencing a much higher deductible with new plans.”

Although other health plans have attempted to provide comparable care, Jackson doesn’t know a single patient who has been able to find care that was equally affordable, and provided the same quality of care. Jackson said the health care Pennsylvania offered after the disenrollement, PA Fair Care, cost $283 per month compared to the $36 per month adultBasic plan. Unaffordable to many, she had quite a few clients forced to live with insurance.

MS is a progressive disease of the central nervous system. Although there have been great advancements in medical research there is no cure. In the past 5 years researches have made significant progress in treating MS. Medications have evolved from infusions, to injectables, to the recent introduction of the first oral medication.

“But unfortunately, research and higher medical bills go hand in hand,” Jackson said.

These drugs have shown great promise and improved the functioning of those suffering from MS. Yet they are new to the market, brand name, experimental and therefore very expensive.

“Patients strive to get the latest and greatest medications, but are often faced with deductibles and co-pays so high, that their only hope of preserving the little health insurance they have is by hiding their MS from their employer, or not submitting all costs to their insurance carrier,” Jackson explained. “They actually pay out of pocket for their MS medications which can run $4,000 a month.”

Additionally, the lifelong diagnosis of MS is an important factor in the financial requests Jackson deals with every day. She notes a significant correlation between the number of years someone has been a client, and an increase in the frequency and amount of financial assistance requested.

“With more disability comes the need for more equipment, i.e walkers, wheelchairs, hand railings, Depend diapers, eyeglasses,” Jackson said. “Home modifications can be very costly such as a walk-in shower or ramp. More services are needed such as transportation needs other special accommodations to keep him or her working.”

The devastating consequences of a crippled economy have kept upward mobility a fantastical dream for millions of Americans. Furthermore, for those living with physical ailments such as MS, not only is their physical mobility under constant threat, but the potential for poverty looms under the cloud of medical bills, co-pays, deductibles and debt. If it were not for the helping hands of organizations like The National MS Society, many of these individuals would simply not be able to get by.

“When a person comes to us and asks for say, $300 toward a utility bill, giving them the $300 won’t single handedly change their life but it will help them stay warm in the winter and get through the financial burden they face,” Jackson said. “But what I believe does impact them even more is the emotional support it gives them. We can be a positive in their life when only negative ones surround them. It empowers them to know more and to do more for themselves.”

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