Occasionally I have the BoobTube on at my home, mindlessly playing in the background (OK...admittedly, I DO watch one or two programs of high-quality TV, like Judge Judy and Oprah...hehe). And today, I was actually WATCHING the noon news broadcast WITH the sound on (I prefer to make up my own headlines with the pictures, thus the sound OFF), when I noticed the barrage of commercials for research studies for depression, bipolar disorder, fibromyalgia, etc. There must have been at LEAST FIVE different commercials for varying disorders attempting to entice me to call a number (that is, IF I am a healthy individual between the ages of 18 - 55, OR if I am between the ages of 18 - 55 and SUFFER from one of these disorders) and donate my body to an "investigational study", aka DRUG RESEARCH PROGRAM. I took notice.Now, before those of you currently IN MS drug study programs (or any other research program for that matter) start girding your loins for what I am about to type, remember THIS: I, too, participated in a MS DRUG research program back in 2005. That's right...I was given two infusions of a drug that rhymes with "BITE-UXIN". I have YET to receive any follow up from the pharmaceutical company or research facility that sponsored this study...I've also YET to receive any acknowledgement or confirmation that the "BITE-UXIN" medication I may or may not have received caused me to develop severe hypertension AND my MS actually WORSENED during this study...which led to being exited from the study, a change in neurologists, and being started on a new MS medication. Hmmm...I imagine my participation data just didn't make it into the final figures as it was FAR from positive. But, anyway...
I was enticed into the above study/research program by my neurologist at the time due to failed responses from two other MS medications. It seemed like a good idea...it even felt slightly altruistic. I could donate my "body and my health" to MS study AND maybe receive a personal benefit of slowed disease progression from the drug to boot! Who wouldn't go along with THAT idea?!? Of note: I also remained gainfully employed, had more insurance coverage than God (which I still do), and had little to lose other than time and possible progression of my disease...which the LATTER could occur anyway, with or without drugs or studies. I'd like to think of myself as the PERFECT candidate for drug research, if I do say so myself. And, the study PAID ME NOTHING for my participation, except free MRI's and labwork and "maybe" "BITE-UXIN" or "maybe" not...good times, good times.
Now, back to the TV ads. What bothers me greatly about these new TV ads is my concern the pharmaceutical companies are now PAYING a bit of cash out to participants. That's right..."if" you qualify, "you could receive up to $1500for your time and travel expenses, and the cost of the medication is free".
OK...again...before anyone stoops so low as to think at this juncture I am DEFENDING Big PhRMA, PULEEZE! There's just something about the noticable increase in these drug study ads and the PAYMENTS now attached that smells stronger than Puget Sound floating with dead fish. I mean, why so many drug studies right NOW? Why not, say a year or two ago...BEFORE THE UNITED STATES ECONOMY WAS SINKING FASTER THAN THE TITANIC? Before people's houses were being foreclosed upon at a rate faster than in the past 20 years? Before there were so many citizens having to choose between buying a gallon of over-priced gasoline OR pay their rent? Before the unemployment rate reached the highest level than we've seen in years? BEFORE PEOPLE WEREN'T SO DESPERATE TO MAKE $1500 DOLLARS BY SELLING THEIR BODY TO A PHARMACEUTICAL COMPANY FOR RESEARCH JUST TO MAKE ENDS MEET???
I dunno...I know I suffer from a lack of faith (and a paranoid personality), but something just smells awfully fishy about the sudden influx of all of these study ads and their financial enticements. And I'm afraid Big PhRMA has recognized, for just a few bucks, it can be open season hunting for study participants anxious to pay their bills in our current economy.
Personally, I think the pharmaceutical companies SHOULD pay their participants in some way. So how about FREE HEALTH CARE paid for by the sponsoring pharmaceutical company for the rest of my life just for taking the risk the study drugs might potentially eff me up????
Yeah, that sounds like a fair trade...
Free Health Care for Life. Now that sounds like an attractive offer.
ReplyDeleteSo I read more lately (in the medical/health policy blogs anyway) that there is a need to make it easier for folks to know about various trials going on. Promoting ClinicalTrials.gov has increased this spring. No coincidence then with more TV ads and push but I hadn't heard about the money involved.
Honestly I don't have the guts to go through a trial right now. When I was finally dx, I wanted to know I was taking something for real, not a placebo.
But I have (had) high hopes for Rituxan since it could potentially treat both my RA and MS in one IV package. But my doctors are ready to experiment with me yet.
I too was in a clinical study. It was 4 years ago. I signed up for what would be a 3 year study for the DMA that I was currently on with oral steroids or a placebo that looked like a boat load of steroids. Of course I KNEW I was getting the placebo. If I had gotten the real thing I wouldn't have lasted the 1st month of the study. They paid for extensive testing...MRI's, bone density, heart ect. and I was paid per visit which would have amounted to $3000 had I completed the entire 3 years. My disease was progressing adding lesions rapidly, so they advised me out of the study.
ReplyDeleteI have noticed more and more studies advertised w/cash incentives for the more mundane illnesses like heartburn and PMS. You know we MUST have a pill for everything.
You know I have to pipe up here!
ReplyDeleteI've been in this Fingolimod trial for a year now and just had my last visit yesterday before moving on to the extension phase.
I didn't get offered one red cent. The paperwork says my benefits are "free medical care while in the program, free medication, and possibly some slowing of my disease progression. But by NO MEANS was I going to get monetarily reimbursed."
I don't even get gas money and I have to drive 2 hrs. both ways to go to the center.
I have heard from others around the country who are in one Fingolimod study or another (all Sponsored by Novatris) that some are being paid as much as $750 to complete the study. Others are reimbursed parking fare or paid for hotel rooms overnight.
I don't even get a coke and a smile.
That's okay tho. As long as I'm on the real stuff, and I think I am, it's worth more than all the gold in Ft. Knox to me.
I'd even take free meds for life over the free health care for life although that sounds good. Lord knows, with the prices they charge for the final product, they can afford to treat us guinea pigs better. :-)