Over the past 20 years the price of treating multiple sclerosis (MS) has increased by nearly 700 percent, a new study finds.
The study was published in Neurology by scientists at Oregon State University/Oregon Health & Science University College of Pharmacy, the Oregon Health & Science University, and the Veterans Affairs Medical Center in Portland, Oregon.
It found the average annual cost for disease-modifying therapies (DMTs) in the United States is more than $50,000 per patient without insurance. That’s two to three times higher than in the United Kingdom, Australia, and Canada.
And, researchers point out, there is no governmental oversight in the United States to regulate the pricing of DMTs such as the MS treatments.
According to the report, “The U.S. Medicare program, the largest single-payer healthcare system in the U.S., is legally prohibited from negotiating drug prices directly with the pharmaceutical industry.”
Time for Change
Researchers say there is an increasing groundswell in the United States for change.
“The [pricing] issue has begun to resonate with the public,” said Daniel Hartung, lead author of the study in an interview with Healthline. “The latest [Kaiser Family Foundation] polls suggest high drug prices and government’s role in controlling medication costs are one of the public’s top healthcare priorities.”
“There are often several drugs in a class available to treat a disease or condition, and 'economics 101' would suggest that competition should lower prices,” added Hartung, an associate professor at the College of Pharmacy at Oregon State University. “In the pharmaceutical industry we often don't see that. Many professionals now believe that it's time to push back, to say enough is enough.”
In 2012 doctors at Sloan-Kettering hospital in New York City refused to prescribe the cancer drug Zaltrap, which they deemed too pricey. Sanofi, the drug maker, backed down.
Doctors, advocacy groups, hospitals, and voters say pricing is a topic of national importance since everyone who pays for health insurance is paying to cover the price of drugs like these DMTs.
With ever-growing frustration over the mounting costs of healthcare, according to Hartung, the political environment might be more conducive to having government play a larger role in this area.
How Are Drug Prices Set Anyway?
In the early 1990s, the average annual price for DMTs hovered between $8,000 and $10,000 per patient.
As competition grew and more drugs have come on the market, instead of prices falling as traditional economic theory would indicate, prices have climbed with each new entrant. According to a study press release, “One drug that originally cost $8,700 now costs $62,400 a year.”
“That is the blackest of all black boxes,” explained Dr. Kenneth Kaitin, a professor at Tufts University School of Medicine in Boston when asked about drug pricing in a 2013 interview with Healthline. “People in the industry will never talk about drug pricing. [Unless they are directly involved, they are] kept in the dark about all of it just because the less they know about it, the better.”
The authors of this study suggest, “The simplest explanation is that pharmaceutical companies raise prices of new and old MS disease-modifying therapies in the United States to increase profits, and our healthcare system puts no limits on these increases.”
Quality of Life Comes with a Price Tag
Taking a DMT is more a matter of necessity than choice when considering quality of life. Often patients see dramatic improvements after beginning therapy. A reluctance to come off DMTs makes price stability an iffy proposition.
When Brian, a North Carolina resident, was diagnosed with relapsing-remitting MS (RRMS) in 2002 he started treatment right away. He remembers the cost as being “a lot, maybe $1,200 per month.”
“I have always had help with my medication,” he told Healthline. “Without assistance, I couldn't have afforded it.”
He currently takes Tecfidera.
All of the pharmaceutical companies offer assistance programs that help the uninsured and those with plans that don’t cover the pricey drugs. Those patients can receive DMTs at little to no cost if they qualify.
Terry, from Ohio, was diagnosed with RRMS in 1997 when his doctor started him on Avonex.
“I think it was around 4K. I'm in the Bricklayers Union and have excellent medical,” he points out. “I only have a $15 copay for my meds.”
Medication vs. Lifestyle
Neither Brian nor Terry are placing all of their faith in DMTs to manage their MS.
Brian has made lifestyle changes that include eating better and getting exercise. He has lost 165 pounds over the past three years.
Terry hasn’t had a relapse since he began Gilenya in 2010, and he stays active by “bike riding and coaching softball and basketball.”
Both men insist, healthy lifestyles and exercise play a role in disease management. They also continue to take DMTs to stay in remission.
In response to out-of-control drug pricing, some patients choose to forgo DMTs, experimenting with alternative therapies that can be risky.
“We should promote therapies that are evidence-based, effective, and safe,” said Hartung.