Maybe your insurance doesn’t cover a particular medication your doctor prescribed. Maybe you can’t afford the co-pays at your doctor’s office. Maybe you read about a new state-of-the-art medication that is working wonders for our disease state. Just maybe there is a clinical trial near you and it’s very convenient. What ever the reason, participating in a Clinical trial isn’t such a bad idea.
I personally volunteered for four Clinical trials. Why you ask? Well one reason was that when I was first diagnosed with psoriasis and psoriatic arthritis there was no biological medications. I was covered from head to toe in scaly, red, raised, thick, flaking, itchy, painful, burning, embarrassing, unsightly plaques.
I knew my quality of life was non-existent. Everything I was trying didn’t seem to work and I was on my last leg. Losing the desire to live, I was depressed and the pain was so intense I couldn’t function normally. People avoided me and I became so insecure I couldn’t speak or think clearly. Twenty five years ago was a terrible time to be diagnosed with psoriasis. The only real means of relief for me was the sun and sea. Also known as climate therapy.
I became a sun worshipper. At first you would think hmmm that’s doesn’t sound so bad. Let me tell you it’s work baking in the 95 degree sun for 6 hours a day. Plus the possible side effect is skin cancer. And let’s face it, the sun doesn’t always shine and it’s seasonal. Then you have the people who look at you and say, “you look nice and tan where have you been?” I felt like saying to hell and back. The best available climate therapy is at the Dead Sea in Israel.
The Dead Sea is a wonderful option but it’s not always affordable. Especially to a young family of four. I personally borrowed the money from my parents. This disease became a financial burden to our family in more ways then one. I wouldn’t wish this disease on my worst enemy. Because we became an one income family we went into debt over 50k. We since then payed all our debt back and managed to keep our heads above water. We did this with a lot of praying.
Early on with my disease there wasn’t so much interest like there is today. I guess we got a break as a community when they discovered cancer patients with psoriasis were clearing up from systemic drugs. Since then they clarified our “skin condition” as an auto-immune disease. This was exactly what needed to happen for our disease state. Much more research was being conducted. The thought of being treated from the inside/out intrigued me.
One of the first Clinical trials I participated in was the study of engineered tuberculosis. I traveled to the city which was two hours away for twelve weeks. I didn’t get reimbursed and it was very inconvenient. I did not respond to this risky idea of treatment.
Treatment failure seemed to be just part of the landscape. Many of the studies at the time were in the city. I was at wits end. I was becoming more depressed and less accepted as a human being. What was I to do, I had a wife and family and I was the bread winner. I continued to research and never gave up. The Internet was primitive at the time. There was no social media support groups. I felt alone. If it wasn’t for the National Psoriasis Foundation and their quarterly Advance Bulletin, I think I might of given up.
I read about a church in Scranton PA that had healing capabilities. I traveled four hours each way. I got down on my knees and prayed. Well I walked out of the church still covered with plaques. But a funny thing happened which I thought at the time was a coincidence. When I got home I went to the answering machine to listen to my messages. The voice said they were conducting a clinical trial for an experimental biological medication. It gets better then this, it was right up the street from my house. I have no idea how they got my number still to this day. They say “coincidences are God’s way of staying anonymous.”
So to make a long story short I went to the doctors office filled out the paperwork and I was told to get my bloodwork done. They checked everything. That’s a plus when your participating in a CT. I was happy cause I didn’t have to lay out a dime. Because it was a CT there are no guarantees. The risks were great at the time because this was one of the first biologics for psoriasis. The drug name was Raptiva. I gladly signed my life away knowing that it was working on the experimental lab mice. Suddenly I felt like running on a hamster wheel.
Well a few shots in and things were getting better. I was clearing up. I was elated. Even the PA was excited for me. Oh one other thing, when your in a CT for a medication you don’t know if your getting the medication or a placebo. It’s a controlled experiment. It’s one of the drawbacks. But I had nothing g to lose. I cleared up totally and was told I would be receiving the drug for free until the trials ended. I was on it 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? Will this drug effect the other healthy organs in my body? What are the long term effects? Will my insurance cover the cost? Are the risks/rewards worth it? All these thoughts consumed me. All I know is that I was clear, it’s time to P A R T Y!
Well that party was short lived because my drug was canceled due to fatal occurrences. I really didn’t care I was clear and pain free and I wanted to stay that way. Eventually the unthinkable happened and I was “rebounding” more then the Shack. It got to the point where I felt like I had one foot in the grave. But I was determined to live and fight for my life.
I had to try another CT which they had going on. They said it was just as good. It was a TNF inhibitor called enbrel. I failed miserably. I think it would of worked but I had no “washout” period. Things were getting tougher as my disease was relentless and was making life a chore. The social implications of this disease made it impossible to live life without rude comments and stares. People thought my visible plaques were contagious. This couldn’t be further from the truth. Thank you NPF for raising awareness and making society more aware that psoriasis and psoriatic arthritis is not contagious.
So what was I to do, I was extremely depressed and miserable. Nobody understood me. I had to do my homework and find a solution. I went back to the rinse and repeat theory. Time for another road trip back to Scranton, PA. Four hours there four hours back. St. Anns Basilica has a story of its own. How do I go on living like this?
Nobody seemed to care and I further isolated myself from society. When I got back from St. Anns I saw the red light on the answering machine. The voice was heaven sent. This time it was for a biological medication called Stelara. Unlike the TNF inhibitor this medication blocked two parts of your immune system interleukin 12 & 23. This medication was outstanding for me. It was just FDA approved at the time for psoriasis. I felt it working on my skin and joints. This was a Janssen product. Once again my quality of life return. I was determined to help my body by eating responsibly and exercising.
I wanna rap this up because I kept you long enough. I feel there are more pros then cons for clinical trials. I think it’s worth the risk if you do your homework about the medication before hand. If your struggling with the risks then maybe you need to read more to make yourself more comfortable.
To find out what clinical trials are going on in your area click on this link, clinical trials. You would be doing yourself a great service by joining the NPF and supports this organization. Educate yourself and make sure you know your not in this alone. Thank you. Share and like in order to raise awareness. Remember to have your pets spade and neutered!