The most important medicines taken for MS are known as disease-modifying therapies (DMTs), because they can keep the condition in remission or prevent it from worsening. According to the National MS Society, the median annual list price of DMTs has risen in recent years, and in one case reached a whopping $88,000. For years the National MS Society has heard people with the disease describe the financial burden of the drugs they must take. But recently the society came to realize that it lacked a fuller assessment of the broad impact of these costs on MS patients. Last summer the organization surveyed nearly 600 people currently taking DMTs, then interviewed 15 of them in depth to gain a more comprehensive understanding. Results of the survey uncover the full range of suffering brought on by the exorbitant cost of these meds. RELATED: Out-of-Pocket Costs Are Up Sharply for People With MS
MS Drug Prices Keep Rising
It’s shocking to realize how the price of DMTs has skyrocketed in recent years. A study published in August 2019 in JAMA Neurology found that in the 10 years between 2006 and 2016, annual costs of these drugs have more than quadrupled. “Even when patients have insurance, these price increases result in very high out-of-pocket costs for them,” says study coauthor Inmaculada Hernandez, PharmD, PhD, assistant professor of pharmacy and therapeutics at the University of Pittsburgh School of Pharmacy in Pennsylvania. There are many DMTs that MS patients take. They include the drugs Ocrevus (ocrelizumab), Tecfidera (dimethyl fumarate), Copaxone (glatiramer acetate), Tysabri (natalizumab), Gilenya (fingolimod), Aubagio (teriflunomide), Rebif (interferon beta-1a), and Mayzent (siponimod), among others. In the National MS Society survey, patients report paying out-of-pocket costs for DMTs of up to $20,000 a year, although thanks to financial assistance from pharmaceutical companies and their insurance, the average is $2,300. A lucky 45 percent report paying nothing. “Only 11 percent of our survey respondents said they could easily afford their medication without financial assistance,” says Bari Talente, the National MS Society’s executive vice president for advocacy, who was involved in the survey. And that’s taking into account only DMTs. People with MS also pay for other medicines that provide symptom relief, as well as diagnostic testing and health insurance premiums, Talente observes.
The Stress of Paying for DMTs Takes a Toll
It’s not surprising that survey respondents report a high degree of anxiety about whether they will be able to stay on these crucial medicines. Forty percent said the process of getting their DMT paid for makes them anxious, and 31 percent said the stress spills over to other family members too. Even getting money from financial assistance programs can be a nerve-wracking endeavor, Talente says, citing one woman from the survey who had to delay getting her needed medicine for a month until the approval was finally worked out. That’s assuming people even get the money. One survey participant, 65-year-old Diane Dixon, says that to afford her DMT, she must rely on the largesse of private foundations. “Every year, you have to call the 800 numbers,” she told the survey takers. “Some of them only take about 17 people nationally. Hopefully, you get there before the money runs out.” In the survey, 12 percent said they have had to stop taking their medication for a time due to cost, and 8 percent have taken less than prescribed to stretch their drugs to last longer. Some 14 percent were required to take a drug their insurance company demanded before they could go on the medicine their doctor believed was best for them, a process known as step therapy. “[The cost of my medication] causes a lot of stress in our family, a lot of worry,” Holly Ridgway, one of the study participants, reported. At times she has skipped her medication to afford basic living necessities. But when she went untreated for three months a few years ago, her disease advanced and she went from using a cane to now relying on a walker.
What People Give Up to Afford Their Meds
The survey asked people how paying for their DMT affects their quality of life. Sixteen percent said it impacts their ability to save for college for their children or retirement for themselves. Some 14 percent are charging some of the costs on their credit cards, postponing the day of reckoning. When it comes to paying other bills, 9 percent have had to put off paying some of them. And 11 percent are cutting corners on groceries, even though a diet high in produce, which can be more costly, is important for maintaining good health.
Some May Not Feel Entitled to Fun
The cost of these meds crowds out people’s ability to enjoy the parts of their life that don’t involve doctor’s visits or debilitating symptoms. A full 25 percent said they spend less on themselves because of the money their drugs cost their family, and 21 percent have cut back on entertainment or dining out. “We have to forgo a lot of activities that we might like to do because we have to pay for some of my medication out of pocket. We don’t go to movies; we don’t go out to dinner. We can’t afford it,” Ridgway reported. Survey respondents say they try not to spend discretionary money on themselves, like buying clothes, getting a stress-reducing massage, or going to physical therapy, because they know how much their disease is impacting their family’s finances. “People feel guilty about the burden their MS and its high cost brings to their family. Whenever possible, they are trying to put their family first in whatever ways they can,” Talente says. While praising the way DMTs have changed the prognosis for people with MS, Talente says drug companies must keep them accessible. The National MS Society has worked with Congress, insurers, and drug manufacturers to try to get prices down, but despite these efforts, Talente says, there is a long way to go.
