Life with MS

Sticker Shock: The Underinsured

By MSF Staff
A downturn in the economy and a trend toward consumers paying a larger percentage of their prescription drug costs are combining to present a new problem: even people with insurance are struggling to pay for their medications, and those with MS have some of the biggest bills. 
Some of those who are struggling have insurance policies that do not reimburse them for prescription drugs, or that have low caps on drug coverage. But others are among the 25.4 million Americans enrolled in prescription drug plans created under Medicare Part D, a federal program launched in 2006. 
Avalere Health, a company that researches healthcare issues, recently found that most Medicare Part D prescription drug plans have created “specialty tiers,” Tier 4 and sometimes Tier 5, for high-priced drugs.
Under those plans, the first three tiers are fairly standard. The first is for generic drugs, the second is for preferred brands, and the third is for non-preferred brands. People on the plans who take drugs on the new fourth and fifth tiers, however, are charged a larger share of the medication’s cost, instead of a flat co-pay.
Which medications are making it on to the Tier 4 and Tier 5 lists? Commonly, MS drugs.
Avalere’s list of the 20 medications most likely to be placed on the top tier of Medicare Part D prescription drug plans reads like a roster of MS disease-modifying treatments. In 2007, 97 percent of the plans required their beneficiaries to pay the highest cost for Betaseron, and 96 percent asked those on Avenex to pay the top rate, according to Avalere. Copaxone comes in at number nine on the list, and Rebif at number 20.
Jennifer Bowman, a director at Avalere, said which drugs end up on the list has less to do with specific conditions than cost. For 2008 and 2009, drugs with negotiated costs that exceed $600 a month can be placed on specialty tiers under Part D plans.
“I think that the Part D plans have a fair degree of flexibility to make decisions about which drugs they can put on a specialty tier,” she said. “Many plans might be looking at the prices of different drugs and think they should pass more of that cost to the patient.”
Some employer-based healthcare plans have started using similar systems, creating a situation where people with chronic illnesses are paying big-ticket costs for drugs that are key components of healthcare.
Even a small percentage of the average disease-modifying treatment for MS can be a big expense. A recent study of 220 people who had been diagnosed with MS in the past five years found that 27 percent of them said the ability to afford their medications made a difference in whether they started or stayed on a disease-modifying 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.’”
So what can you do?
Richard Sagall, president of NeedyMeds, a web resource at, 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 NORD has a waiting list for its 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,, 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.
 (Last reviewed 7/2009)