I have volunteered for four clinical trials. Why? One reason was that 25 years ago, when I was first diagnosed with psoriasis and psoriatic arthritis, there were no biologics.
At that time, I was covered from head to toe in scaly, red, raised, thick, flaking, itchy, painful, burning, embarrassing and unsightly plaques. I was depressed, and the pain was so intense I couldn’t function normally. People avoided me because they thought I was contagious. I wouldn’t wish this disease on my worst enemy.
Early on, there didn’t seem to be as much interest from the medical establishment like there is today. We got a break when doctors discovered that systemic drugs were clearing up cancer patients with psoriasis. Since then, they’ve redefined our “skin condition” as an autoimmune disease. I was intrigued by the thought of being treated from the inside-out.
One of the first clinical trials I participated in was a study of engineered tuberculosis. I traveled to this trial, which was two hours away, once a week for 12 weeks. I didn’t get reimbursed, and it was very inconvenient. I also didn’t respond to this risky idea of treatment. I was becoming more depressed and felt less accepted as a human being. What was I to do?
Desperate for a solution
I read about a church in Scranton, Pennsylvania, that offered healing capabilities. I traveled four hours, got down on my knees and prayed. I walked out of the church still covered with plaques.
But a funny thing happened. When I got home, a voice on my answering machine said they were conducting a clinical trial for an experimental biologic medication, and the trial was right up the street from my house. I have no idea how they got my number, but people say that “coincidences are God’s way of staying anonymous.”
I went to the doctor’s office and filled out the paperwork. They checked me over, starting with bloodwork. I didn’t have to lay out a dime. That’s a plus when you’re participating in a clinical trial. However, there are no guarantees. You don’t even know if you’re getting the medication or the placebo. That’s one of the drawbacks.
The risks were great in this trial because this was one of the first for psoriasis. The drug was Raptiva (efalizumab). I gladly signed my life away, knowing that Raptiva was working on lab mice. Suddenly, I felt like I was the one running on a hamster wheel.
After a few shots, I started to clear up. I was elated. I was pain-free. I received the drug for free until the trial ended. I was on Raptiva for years. I was living life once again.
Then that fear set in that we all think about. How long is this going to last? What are the long-term effects? Will my insurance cover the cost? Are the risks/rewards worth it?
My drug was canceled due to some fatal occurrences. My psoriasis came back to the point where I felt like I had one foot in the grave, but I was determined to live.
If at first you don’t succeed
I decided to try another clinical trial. This one was for Enbrel (etanercept). I failed miserably. Unfortunately, treatment failure is just part of the clinical trial landscape.
My disease was relentless. Once again, I was depressed and miserable, isolated and misunderstood. I tried another road trip to the church in Scranton. When I got back, I had another message on my answering machine.
This time, it was about a clinical trial for a biologic called Stelara (ustekinumab), which had just been approved for psoriatic disease. This medication was outstanding for me. I could feel it working on my skin and joints. My quality of life returned.
I believe there are more pros then cons for clinical trials. I think it’s worth the risk if you do your homework about the medication beforehand. If you’re struggling with the risks, then maybe you need to read more to make yourself more comfortable. It’s important to educate yourself.
Todd Bello is a psoriatic disease blogger and long-time member and supporter of NPF. In addition to leading several successful fundraising campaigns for Team NPF, he provides emotional support and advice to new members of the psoriasis community through our One to One mentorship program and through his own support group, Overcoming Psoriasis.
The opinions expressed by National Psoriasis Foundation Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice. Always consult with your physician if you have questions or concerns relating to clinical trial participation. For more information about clinical trials, check out this webcast.
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