People that know my medical history comment on my involvement in clinical research studies – “after what happened to you in 1997, how could you trust clinical research again?”
So, what happened to me in 1997?
A long time ago, back in the 20th century (1997 to be exact) I took part in an FDA trial for a new device – a “disc replacement” that would eliminate the need for spinal fusion and the bulky hardware necessary to stabilize the spine while it remodeled. I had been injured in a high-impact car accident that torqued my body, allegedly causing an annular tear in the disc at L5-S1. I was the first patient in the US to receive the new devices (they had already been successfully tested in Europe and Australia), and 5 months later, the first person in the US to have the implants removed in an emergent surgery. Turns out that the internal incision didn’t heal and the devices migrated out of the disc space, compressing the nerve roots on the left side, leaving my left leg suddenly weak and excruciatingly painful. (I would not experience that pain again until 2012, when the inevitable disc herniation at the level above my now fused space at L5-S1 became acutely symptomatic for a brief period.) I received a new fusion device to fuse my empty space during the 2d surgery, but just my luck, the surgeon/inventor placed the nifty little devices incorrectly, setting off a cascade of hellish experiences from which I still suffer. Had this not have taken place during a research study, it would have been fertile ground for a malpractice claim.
Why then, do I continue to volunteer for medical research studies?
1. I enjoy the research process. I went to grad school for medical research. Since I am unable to work a full-time job due to the unpredictable nature of my resulting nerve pain, being a part of clinical research helps me to feel as if I am doing something worthwhile.
2. I have conditions from which many people suffer, and the treatments available are woefully inadequate, poorly administered and not made available to everyone that needs them. Why not use my resources (my body, my physical ailments, my talent for record-keeping) to help not only myself now, but others in the future, by being a part of clinical trials now?
3. I like talking with doctors interested in learning from patients. Research docs are great listeners because they want to hear my story. They want to find a way to help people with medical issues like mine. It is very cathartic to talk with doctors that understand your issues. Sometimes, just having a medical professional listen to you without trying to rush you out the door can make you feel validated and vindicated.
4. Even though they may not be able to treat you personally, sharing your experiences with the research team may lead to future research opportunities that WILL help you! It has helped me tremendously. I have formed relationships with a research team that I consider just as important, if not more important, than my relationship with my PCP. Because of their up-to-the-minute knowledge of the treatments in the area of pain management, migraines and other conditions that affect me, they have provided me with referrals for specialists well-versed in the cutting-edge skills and treatments that may help me.
Don’t lose an opportunity for free medical care for your condition that may not yet be available to the masses. The medical care you receive during a clinical trial is far more complete than the care you will ever receive on routine doctor visits. All medical tests are paid for (such as EKGs, hearing tests, CBCs, urinalysis, fMRIs, etc.) and the results of most of the tests are shared with your PCP. Don’t take a pass on an opportunity to be “heard” – perhaps for the first time – by practitioners that are truly interested in finding out what your medical issues are. My research contacts have been a bridge, a “sounding board,” and a support system over the past 6 years, and I wouldn’t have the excellent health care providers I have right now if I had not participated in research relevant to my health concerns.