More MS news articles for August 2000

Nonprofit pays health insurance premiums for chronically ill
Last updated Aug. 11, 2000
By Vicki Lankarge

When Jeanne Knapp of Kentucky was diagnosed with multiple sclerosis five years ago, her disorder threatened her family's modest lifestyle. Jeanne's medication expenses jumped to $10,000 annually, and her husband, Jim, lost two jobs before securing a position with an employer who doesn't offer health insurance.
Individuals or families affected by the following disorders are eligible to apply for premium assistance from Patient Services Inc. (PSI):

For more information about the organization, visit the PSI Web site or call (800) 366-7741.
Despite their hardships, the Knapps have managed to retain health insurance thanks to Patient Services Inc. (PSI), a small, but growing, nonprofit charitable organization founded in 1989. Based in Midlothian, Va., PSI serves people in 45 states and pays health insurance premiums for individuals and families dealing with specific chronic illnesses such as AIDS, cystic fibrosis, hemophilia, and multiple sclerosis.
PSI pays the Knapps' entire COBRA premium to Jim's former employer. COBRA (short for the Consolidated Omnibus Budget Reconciliation Act) is a federal law that provides the continuation of health benefits to qualified workers, their spouses, and their dependent children in the midst of crisis, such as unemployment, divorce, or death. (See Know your COBRA rights.)
According to PSI President Dana Kuhn, the organization's goal is to provide a safety net against indigence to chronically ill people whose earnings disqualify them from low-income federal assistance programs such as Medicaid. Kuhn, who holds a doctorate degree, is a former counselor of the chronically ill. He says he has learned the steps to indigence don't start with the diagnosis: They begin when an individual or family dealing with a serious disorder loses their health insurance.
Kuhn lays out a scenario he says he has seen all too often: "One parent leaves his or her job to take care of a child with cystic fibrosis. That parent carries the family's health insurance. So now, on top of the $50,000 to $100,000 per year in medical expenses, there is one less salary to meet expenses and now they have to make COBRA payments in order to continue their health coverage. The family's savings are the first to go. Then they sell the car, the home, and then there are no more choices left."
One of a kind

PSI's program is unique. It helps the chronically ill retain complete access to their medical care, rather than just giving away free medications to those who qualify, as is the case with indigent drug programs. (See Drug makers offer medications to people who can't afford them .)
They're granted assistance based on a sliding fee scale for a maximum of two years.
Run by a staff of nine, the organization handled 14,000 inquiries in 1999, according to Kuhn. "We like to think we helped everybody in some way," he says, although only 1,669 people were approved for premium assistance due to budget contraints. Applicants, who must submit financial and medical information, are told up front that acceptance always is based on need and funding availability, so there are no guarantees. PSI's income eligibility guidelines are fairly generous and based on incomes that are 250 to 300 percent above the federal poverty level, which ranges from $8,350 to $28,650, depending on the size of the family.
When applicants are approved, they're granted assistance based on a sliding fee scale for a maximum of two years - pending PSI funding. Should they need assistance beyond this period, they must submit new applications. Depending on the particular chronic illness or medical disorder, PSI can provide premium assistance payments for COBRA, high-risk insurance pools, and open-enrollment and guaranteed issue policies. In some circumstances, the program may fully or partially reimburse expensive prescription copayments.
Tough sell

The fact that PSI is not widely known is a double-edged sword, Kuhn says. He fears more exposure could lead to a deluge of inquiries and applications. On the other hand, he certainly would welcome more contributions from his most tried and true sources - private citizens, pharmaceutical companies, drug distributors, and corporations such as Anheuser-Busch.
"When a loved one is sick, you will give up everything to keep them alive."
Kuhn's biggest frustration has been trying to persuade drug companies to work with PSI. "They say, 'Hey, we're giving away free product to a thousand people,' " he says. "My response is, 'That's great, but there's a thousand more people you're not serving. ' " Kuhn also has appealed to executives one-on-one, telling them that a devastating illness can come unbidden to anyone. When all else fails, Kuhn supports his argument by reminding executives that they could contribute $500 monthly toward helping to pay a patient's health insurance premium, or they could just hand over the drug that costs $1,000 monthly - for free. It's an argument that gets their attention, Kuhn admits.
Kuhn's vision is that one day, the government, drug companies, and corporations will work together to fund premium assistance programs that would allow people to retain access to their health care and avoid taxing the already stressed state and government low-income assistance programs. To that end, Kuhn is constantly and carefully trying to expand PSI's programs with one eye on the budget and the other on the future. He currently is working with companies that manufacture oncology drugs so that one day cancer could be added to the list of specific diseases that qualify for PSI premium assistance.
The pitch to some drugs companies will never come easily, because there seems to be no limit to what they can charge - and get - for their products. "When a loved one is sick, you will give up everything to keep them alive," Kuhn says.
Last updated Aug. 11, 2000