Your Health and Clinical Trials
By: Nancy | May 22, 2008 | Category: Health
News of Senator Ted Kennedy's brain cancer hit a lot of people pretty hard this week. When someone so prominent receives a difficult diagnosis, concern trumps political agendas. And we're all reminded that it doesn't matter who you are—health problems don't discriminate.
If you or someone you care about is pondering a treatment plan for a medical condition, one option might be taking part in a clinical trial or study.
Clinical trials test medical treatments—from drugs and vaccines to medical devices 
and therapies—on human volunteers, to help determine whether they're safe and effective enough to be approved for use by the general population.
To qualify for a trial, you'll need to meet eligibility requirements like age, gender and type and stage of your medical condition. Tests, medications and doctor visits may all be free for the duration of the trial. And you might even be compensated for participating.
Before you sign on to a clinical trial, the most important thing to be aware of is that experimental treatments can have risks or serious side effects. But if you feel that a clinical trial may give you a better chance for recovery or survival, or if your goal is to help the next generation of people affected by the same medical condition you have, the benefits may outweigh the risks for you.
The National Institutes of Health's web site, ClinicalTrials.gov lists more than 56,000 trials worldwide on a broad range of medical conditions, from acne to Alzheimer's. There are more than 2,200 studies on high blood pressure; 2,500 on breast cancer; 3,500 on AIDS and more than 200 studies on the treatment of the kind of brain cancer that Senator Kennedy has: malignant glicoma. You can search for trials by medical condition, location or even age group.
What's been your experience? Have you or someone you know been involved in a clinical trial?
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The first trial was for an injectable (into the eye) steriod pellet that would quell inflammation caused by uveitis. Unfortunately, I either got the "sham" (pretend procedure) or the device malfunctioned because I did not benefit from the trial.
The second trial was for an oral immunosuppressant drug (LX211). I decided not to participate in that trial because of all the medical testing (bloodwork, ophthalmic tests like FAs and OCT) and all of the pills (12 a day! and apparently they were horse pills) and because I was stable on my current immunosuppressant.
Clinical trials are very important, especially for orphan diseases like uveitis. Not many drugs are labeled for treating uveitis. Many of the medications prescribed for uveitis are "off-label"....they tend to be anti-rheumatic drugs, immunosuppresants, and chemotherapies. Alot of uveitis patients have to fight with their insurance companies to get the pricier medications covered. What insurance companies don't understand is that if you don't treat uveitis properly, you will go blind or suffer other visual complications like glaucoma or cataracts.
So it is even more important that people participate in clinical trials if they can. But please weigh the (potential) benefit of the treatment to your current treatment...
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Thank you so much for posting about your experience in the clinical trial. I think you're pretty brave; I don't know if I'd be able to withstand having something injected right into my eye!
I hope your condition remains stable on the treatment you're on now and I'm hoping even more that someday soon, one of these clinical trials will reveal a cure.
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The second trial I participated in was just a few years ago for a drug called Fampridine-SR. The company developing the drug has decided the results they got weren't statistically significant in achieving what they were after, so they're now focusing on testing the drug on people with MS. Which is interesting because I actually felt like I saw results with that drug... I'm not saying I was able to leave my chair behind and get up and walk, but I did see some return of function. When you haven't been able to do so for years, it's really exciting to be able to move your toes or bend your knee on your own!
I'd definitely participate in future trials-- I almost feel like it's my duty to help people in the future who might end up with an SCI. I am squeamish, though, so I'll take a pill or have an injection, but I probably wouldn't do any surgery!
By the way, for anyone with a chronic condition like mine, I found two things to be really helpful: paying attention to what's available on clinicaltrials.gov that's targeted at my condition, and then keeping an eye on the companies developing the drugs/therapies/whatever. So, for example, a company called Acorda developed Fampridine-SR, and I take a look at their website every so often to see what else they're working on. This way, I get a heads-up as to when their next clinical trial starts.
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A huge number of people would love for it to be used medically, and marijuana prohibition is very outdated, just like alcohol prohibition was outdated back in Capone's day, people like him became very powerful, just like the underground merchants of marijuana are very powerful today, there is no telling what they put in their products, so regulating it here in the USA would take out most of the powerful people who have even risen above the US Government. These people have lots of control and some put junk into what is a reasonably decent drug!
Pot has been a drug that many millions of people prefer to use for making them feel better and to give them a sense of well-being, so how about letting research be done and stop suppressing it's studies and uses!
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It's exciting to think that something you're participating in could make not just your life, but a lot of others' too in the future, better.
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