Medicare’s new Part D drug benefit is having an unintended side effect — people with disabilities, including thousands living with Multiple Sclerosis, have been cut off from patient assistance programs (PAPs) formerly offered by drug companies, and now cannot afford necessary medications, advocates say.
The Illinois Chapter of the National Multiple Sclerosis Society and the Chicago-based research and advocacy group Health and Disability Advocates are organizing people with MS to press drug companies to readmit Medicare beneficiarides to programs which offered subsidized drugs prior to Part D.
An estimated 20,000 Illinois residents have Multiple Sclerosis.
Under Part D the specialized and premium medications needed by people with MS are in the top tiers of drug plan formularies, with copays that can total hundreds of dollars a month. That contrasts much smaller subsidized copays under patient assistance plans.
For people with incomes just over the limits for state and federal assistance — which includes a large proportion of people with MS depending on Social Security disability benefits — once they reach Part D’s “donut hole” where they must pay 100 percent of drugs costs, “it’s too expensive,” said Jackie Guthrie of the National MS Society. “People haven’t got the money.”
Many are forced to forego disease-modifying medications which can prevent the progression of the disease, Guthrie said — heightening their risk of developing a range of disabilities.
“Medicare Part D doesn’t work for people with high drug needs who don’t qualify for extra help,” said John Coburn of HDA.
Drug companies cut Medicare beneficiaries from their patient assistance programs following an advisory from the U.S. Department of Health and Human Services last November that PAPs “present a heightened risk of fraud and abuse” under anti-kickback laws.
Pressured by members of Congress, HHS recently issued a new advisory setting forth ways companies could reopen their PAPs. But getting companies to do so “has been like pulling teeth,” said Coburn.
“I don’t think they were looking for an excuse to drop their programs — I think the government’s guidelines scared them,” he said. He added that the patient assistance programs were very inexpensive for drug companies. “Now it’s just a matter of getting the wheels to move,” he said.
Last month the Springfield Journal Register reported MS patient Roxanne Metz of Jacksonville, Illinois, was told the Berlex Laboratories was resuming a foundation program which had provided her with betaseron at subsidized prices. Her out-of-pocket expenses had risen from $1,200 a year under the old program to $4,500 a year under Part D, the paper reported.
But Guthrie said Metz has received nothing in writing and is now growing “leery.”
This week Illinois residents with MS will gather in Springfield for a town meeting on patient assistance programs and Part D, part of an effort to raise awareness about the issue and pressure Congress and drug companies to make reinstating the programs a priority. Sponsored by the National MS Society and HDA’s Make Medicare Work Coalition, the town meeting takes place Friday, May 12, 2 to 4 p.m. in the auditorium of the Springfield Howlett Building, 501 S. 2nd Street.