As originally reported by the Oklahoma Medical Research Foundation; Tonja Martin was running through her retirement savings for her medical care. She spent $3,400 every month to cover treatment for her Multiple Sclerosis; her insurance company wouldn’t cover it. The treatment was vital though to avoid the progressive disease. The medication was unaffordable, but in-expendable. It was the only thing between her and becoming handicapped with MS characteristic loss of vision and mobility.
Then she received an offer that changed her life. There was a spot in a clinical trial for an experimental drug, costs are covered. These trials can be important for rare disease patients who may not have any available or affordable options. These trials are mandatory for pharmaceutical manufacturers which often involve many years of data collection as the drug takes its effects. The sponsor provides access to drugs not on the market and pays for the patients participation, in exchange the patient takes on the risks of digesting unapproved drugs without the security of the rigorous trials to guarantee safety. Researchers study participants to find unknown side effects, which can potentially harm the participant.
When Martin signed up, it was a gamble. They did not know if the treatment would be effective, and the experiment was double-blind, meaning she was not sure if she was administered a placebo.
However, after she received the second infusion a year in, she began to realize the drug was working. She describes feeling her energy pick up and her health problems dissolving, her dizzy spells simmered, she said, “I felt like I used to feel.”
Martin was a lucky participant who got the best-case scenario: a better treatment than ever, free. She describes the impact as miraculous, “I had relapsing-remitting MS, and now I’m living symptom-free. I literally don’t know what I would have done.” The normal treatment costs can be $40,000 annually or more. Martin instead, has signed up for trials that last until 2021 which study long term consequences, drugs of course, cost free.
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