Multiple sclerosis (MS) patients who take one of the 10 disease modifying drugs (DMDs) on the market to ease the symptoms of their disease have seen the price tag that comes with quality of life. At an average annual cost of $62,000, these drugs serve as the income-generating, reliable part of a pharmaceutical company’s portfolio, allowing them to invest the profits in riskier research.

For MS patients who depend on these drugs, being the money-making back on which new research is launched is a bitter pill to swallow. But patient advocacy organizations, doctors groups, and social-media-savvy individuals now have more power than ever to change the status quo.

MS is a chronic, progressive, and often debilitating autoimmune disease that affects the central nervous system, including the brain, spinal cord, and optic nerves. More than 400,000 people in the U.S. have been diagnosed with MS, while worldwide that number is in excess of 2.1 million. There is no cure for MS, but the number of DMDs to treat it is growing at an astounding rate.

According to Daniel Kantor, M.D., president of the Florida Society of Neurology, founder of the Southern MS Consortium (seMSc), and medical director of Neurologique, “The first disease modifying agent was FDA-approved in 1993. Since that time, we have seen an explosion of FDA-approved products, with the most recent being on March 27, 2013, and we expect one more this year and probably two in 2014.”

All of these drugs cut relapse rates dramatically and, in some cases, delay the onset of disability.

Unfortunately, Kantor told Healthline, “the cost of the DMDs sometimes makes it impossible for patients to get the right drug for them, and this can affect their quality of life.”

None of the pharmaceutical companies Healthline contacted responded to requests for interviews.

“MS DMDs are too expensive,” Kantor said. “This is almost universally recognized. The problem is that they keep increasing in price. In the U.S., the vast majority of people with MS get their DMDs at a very low price to them because of patient assistance programs. Sometimes, however, even when we try very hard we can't get the medications at an affordable price. This is especially true for...the working under-insured and people on state and federal insurance plans.”

The Impact of the Internet

Social media is a platform many use to voice a call to action, creating a grassroots effort that can spread like wildfire. With a worldwide audience, the impact of an online movement can be powerful and nearly instantaneous.

For example, when Netflix proposed a separate pricing scheme for streaming movies and renting DVDs in 2011, the Internet entertainment company suffered a consumer backlash never seen before.

Through Facebook posts, tweets, and online petitions on sites like, customers vented their outrage at being asked to pay an additional $7.99 per month. They stood together, unsubscribing from the service in protest. Netflix lost 800,000 subscribers, and as a result, the company abandoned its restructuring plans.

Customers were unwilling to pay an additional fee for no added benefit and put their collective foot down. All in response to being asked to shell out $8 more per month. Imagine if Netflix wanted to charge $5,200 per month.

That's the average cost a person with MS can expect to pay for medications until the drugs outlive their patent protection. The patent life for DMDs is about 20 years, so when the newest DMDs enter the market, patients will wait five to 10 years to see cheaper generic equivalents.

If You Can't Boycott, Build Bridges

For patients who benefit from them, refusing to take DMDs is tantamount to shooting oneself in the foot. According to Dr. Kenneth Kaitin, a professor at Tufts University School of Medicine in Boston, Mass., the dilemma is that “If you think the price is too high, you could boycott it and say ‘I’m not going to take it,' but that’s not generally true with pharmaceuticals because if you need the drug, you need the drug.”

On the flip side, according to Kaitin, drug makers are paying more attention to patient groups, especially ones that work closely with the industry. A case in point is the Michael J. Fox Foundation for Parkinson’s Disease, which has a strong partnership with the drug companies Pfizer and Sanofi.

Hypothetically speaking, Kaitin said, “If the membership of the Michael J. Fox Foundation started taking out ads in the newspaper or going to their congresspeople and complaining of the price of a brand-new drug, I have no doubt that those companies would listen. They’d pay attention and would probably act accordingly. Patients have a very strong voice today...That started during the AIDS epidemic in the late 1980s and early 1990s.”

Doctors Write a Prescription for Change

Other powerful players in the way drugs are priced are physicians groups. After all, drugs don't get into patients' hands without a written prescription from their doctors.

For years doctors have been accused of not knowing—or caring—about the prices of the products they prescribe. But last fall a drug maker marketed an expensive anti-cancer medication to doctors at one of the nation's leading hospitals, and they decided its marginal improvement over an existing drug did not warrant the steep price tag.

"There was a new cancer drug that was approved by Sanofi, one of the big pharma companies. The name of the drug was Zaltrap, and it was for colorectal cancer," Kaitin said. "Physicians at Memorial Sloan-Kettering hospital in NYC said, 'We’re not going to prescribe this. We’re not even going to put it on a formulary in the hospital because we think it’s too expensive,' and ultimately the company lowered the price. So even physicians...are beginning to get into the act.”

According to Kaitin, talking to their doctors is another way patients can be empowered to effect change. “Patient groups can put pressure on physicians as well and say, ‘You’ve been prescribing this drug and this drug is outrageously priced, or unfairly priced, and you have power!’”

One Voice Can Make a Difference

If you think drug prices are unfair but feel powerless to change them, think again. What constitutes a “patient group”? Look no further than your local MS support group or your regional chapter of the National Multiple Sclerosis Society (NMSS).

“Patients need to work hand in hand with the doctor community on legislative issues” said Kantor. “In Florida we started the FL NeuroAlliance to bring patients, care partners, doctors, and nonprofits together to work collaboratively on such issues.”

On their website, the NMSS says, “You can help shape the policies and programs that impact people living with multiple sclerosis. Join with thousands of other MS activists nationwide. We must work together to break down barriers to care, improve access to quality health services, and make MS therapies more affordable. We must pursue funding for more MS research and fight for disability rights. MS activists help turn those issues into national priorities.”

High Drug Prices Affect Us All

Drug companies all have patient assistance programs in place to help cover drug costs for the uninsured, but that’s tantamount to putting a Band-Aid on a missing limb in today’s poor economic climate. Everyone should care about the high cost of drugs—not only MS drugs, but all medications.

Even if you don’t need medication yourself, if you carry insurance, your healthcare plan pays for drugs for members who do. In an effort by insurers to recoup their losses, the price of your policy goes up. In the end, we all pay.

Engaging in activism has never been easier—all you need is a computer with Internet access. For many with MS who are unable to leave home, social media can serve as their platform. Whether you start a petition, join a patient group, or blog about the desire for affordable medication, Big Pharma is listening.

Patients have the power to effect change. Indeed, the power lies within us all.

Read the first story in this series here.

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