Where can I get help paying for my multiple sclerosis (MS) treatment?

The demand for assistance paying for MS disease-modifying treatments is "off the charts" at the National Organization for Rare Disorders (NORD), said its vice president of patient services, Maria T. Hardin. There is a waiting list for that particular prescription assistance program; she said the problem is compounded because not as much funding has been available from drug manufacturers. "It's unbelievable," she said. "We tell people, 'We'll be happy to send you an application, but we're at full capacity.'"

Richard Sagall, president of NeedyMeds, a web resource that lists patient assistance programs and other low-cost medical resources, suggests people focus on all the medications they take, not just the expensive ones. Finding an inexpensive way to acquire other drugs might help a person save enough to afford the pricey ones, he said.

While the National Organization for Rare Disorders (NORD) has a waiting list for its multiple sclerosis (MS) drug assistance program, for example, it also administers programs for drugs that treat spasticity that might not have the same waiting lists.

After that step, NeedyMeds recommends searching its site by condition. More than 25 programs specific to MS are listed, from national assistance programs to smaller offerings specific to a particular state or region. The manufacturers of each disease-modifying treatment for MS offer their own financial assistance programs as well.

Although many drug manufacturers initially excluded people covered under Medicare Part D prescription drug plans, some now have special assistance to help people bridge the gap, or make exceptions on a case-by-case basis determined by need, said Janet Walton, deputy program director with Volunteers in Health Care/RxAssist, a website which also lists patient assistance programs and resources for the uninsured and underinsured.

She tells people on Part D plans to go ahead and apply for the patient assistance programs offered by drug companies, even if they might not meet the published criteria. Along with the application, she says people should send a detailed letter with very specific information about their income, drug costs and expenses, as well as an explanation of the drug's importance to their healthcare. It can't hurt, she said, and perhaps the most important thing is to be persistent. "You really have to be a strong advocate for yourself." she said.

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