Impacting the Future of FH Care: Joining a Clinical Trial for Familial Hypercholesterolemia

I really didn’t know how to go about finding out about clinical trials, nor had I really given the idea much thought. But after seeing a news story about a new drug coming out for FH, I decided to ask my cardiologist if he knew anything about that new drug. He did some research on my behalf, and came back with information about a drug that was in the clinical trial stage. He gave me a name and phone number to contact if I was interested in participating in the trial. I called the office that very day, and after a couple of weeks of screening and tests, joined the trial.

I was very excited to participate! Not only was I hopeful that I would find a new treatment that would help me, but I was hopeful that I would be helping other FH patients like me and my family to find better treatments. I truly felt that this was a tangible way that I could personally impact the future of FH treatments and research. I was given lots of information on the drug and the trial itself, and I felt very comfortable with everything. I did talk to my family about the trial before agreeing to participate, and based on the information we were given, we all felt comfortable that I would be safe in participating.

I had never done a clinical trial before, and I was pleasantly surprised with the experience. While in the beginning I was required to visit the trial site every 2 weeks, after the first 3 months that changed to only a quarterly in person visit. While my lipid levels were monitored at the trial site and I did meet with the lipid specialist on those visits, my own cardiologist remained my primary doctor for my FH. I was also reimbursed for my travel to the site (about 90 miles from my house), which was helpful. And I didn’t feel like a “guinea pig,” at all – rather, I felt like a pioneer. When the trial directors saw that I was not have a strong response at the beginning of the trial, they increased my dosage so that I could experience the greatest benefit. I always felt that I was being closely watched with my safety as the first priority.

Following the initial trial phase, I was moved into the long term effects study, so I am continuing with the trial today even though the drug is now available commercially. I have been fortunate to have experienced very positive results for myself, and when the drug came out on the market, I saw and heard other people talking about experiencing the same positive benefits, and I was thrilled. It has been genuinely rewarding to see so many others benefit, and to feel like I had a hand in bringing positive change to FH patients.

alijamisonAllison Jamison
Family Heart Foundation Patient Advocate

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