May 1, 2004
I am a Columbia undergrad with Multiple Sclerosis. You wouldn't recognize me as someone with MS, because I look just like you. I don't have a wheelchair or a cane, and I keep my diagnosis a secret (and am writing this article anonymously) in order to improve my chances of being employed after I finish school. In fact, you and I were probably similar in a lot of ways up until nine months ago, when I was diagnosed and put on a $10,000 per year designer drug that I inject every other day with the hope of slowing the progress of my condition.
I know it's not pleasant to think about what your life would be like if what happened to me had happened to you. Probably, like me, you would be very angry. Some of this anger is irrational and useless, focused on people who are just plain luckier than me. But some of it is very justified, and it has to do with research and support institutions that are not doing everything they can to find a cure.
MS is a chronic illness--that means you have it all your life--which affects the nervous system. The illness is poorly understood, but we do know that scars develop on the brain and/or spine of MS sufferers, and that the insulating material that surrounds their neurons deteriorates, making it much harder for the nervous system to move information around. Symptoms range from numbness, dizziness, and trouble concentrating to memory loss, blindness, and paralysis. About 400,000 Americans have MS; about 100,000 of them are in wheelchairs.
Being an enterprising Ivy Leaguer, I've spent a lot of time since my diagnosis familiarizing myself with the disease and the efforts to cure it. Just like you would, I want to both find the best immediate treatment for myself and make sure that real efforts are being made to cure the disease in the long-term future. However, in the course of my research, I came across a lot of defeatism among people with MS. In fact, I found a large Web community of people who had given up on the designer drugs altogether. Whether because they couldn't afford them, because they couldn't tolerate the devastating side effects, or because their symptoms just weren't affected by the drugs, these people have turned to less conventional therapies. The most common and fastest growing of these is Low Dose Naltrexone, a drug with a ton of anecdotal evidence but no scientific studies proving that it helps MS sufferers. At least 1,000 people in the U.S. alone probably use LDN, which works by stimulating the body to create more endorphins, modifying both pain reception and immune response.
This piqued my curiosity. If so many people are using LDN and claiming that it works, then why isn't it being tested for FDA approval in treating MS? The answer should have been obvious: LDN can't make anyone any money. The active ingredient, Naltrexone, was developed so long ago that no one holds a patent. Generic versions of the drug can be created and sold for a few bucks a dose, like ibuprofen. If LDN were certified for MS by the FDA, pharmaceutical companies would lose millions.
This means that no pharmaceutical company would ever pay to test LDN. Fine, then, what about research institutions? Well ... no institutions are stepping forward either. Large research interests like Columbia's Medical Center also put a premium on intellectual property, and doctors there are pressured to find drugs from which they and their employers can profit. It is possible that a good-hearted doctor will eventually apply for a grant to do a study on the relationship between LDN and MS, which would probably cost between $600,000 and $3,000,000. Maybe Dr. Ian Zagon, a researcher at Penn State who has already done important work demonstrating the effectiveness of LDN in cancer treatments, will study MS next. Dr. Bernard Bihari, a New York neurologist who has prescribed LDN for both MS and AIDS, is another candidate. As of yet, no one has stepped up.
Attempts to cure MS are financially dominated by pharmaceutical companies that have no interest in unprofitable solutions. The National MS Society only funds projects that are initiated by outside researchers, and they spend just 20 percent of their funds on research. There is no large-scale institution dedicated to advocating and developing new trends of research in MS, especially when those trends don't promise to be lucrative. Luckily, the internet now provides a forum for this problem to be recognized and remedied. Through message boards and Web sites built by non-profits like the Boston Cure Project, people with MS are starting to recognize and address the shortcomings of MS research.
It's easy to make people with MS care about new approaches to finding a cure regardless of the profit model. It's much harder to convince the people who have the resources to make the cure possible, who usually do not have MS. If you've read this far, maybe by now you have some interest in finding a cure. Maybe you agree that it's not right to allow commercial economics to determine how a disease is researched and treated. Maybe you can help find a way to fix this. After all, I used to be a lot like you.
The author is an undergraduate at Columbia University.
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