I have learned many disturbing things about our medical system as a lab rat.
Currently, I'm on my second clinical study; when no other options exist, clinical trials can feel like a godsend, especially if the medication works.
No one tells you what it's like to be on a study when you need more help than purely receiving the drug. After finishing my undergraduate career, I will move to another state. Months ago, I asked the nurse on the clinical study about switching to a closer clinic. Her original response was that it wasn't possible. Thankfully, my boyfriend said that you can usually transition and I pushed. Finally, she gave me a website and told me I needed to look up whether the clinical study was offered near my medical school. I was flabbergasted. As a health care professional, was it not her job to help me? I called a nurse I trust, and she helped me locate other sites.
The clinical study nurse then checked into that site and told me I was unable to participate in a clinical study there. She said I could continue going to the same clinic I've attended - four hours away from my medical school. For monthly visits in which I would need to miss class, this option seemed unacceptable. She said I could call the insurance company and see if they would cover this experimental drug - I have now been talking with the insurance company for over an hour, and still have no answer.
To many people, this situation may seem reasonable. The nurse has done her job and now it's time to do my part. I don't know how to fully explain how difficult this situation is. After 10 years of never achieving remission, I have now been on a drug for over 2 years that, for the most part, keeps me out of the ER and reasonably healthy. However, that doesn't matter to the clinical study. I understand that data collection is important for the scientific process, but that doesn't make my life any easier. At what point are patients treated as people who deserve health just as much as anyone else? The coordinator has treated me as an expendable lab rat that has completed her time.
Even if I can convince the insurance company to help pay for this drug, I have no idea what dosage I'm on, or even how often I receive this drug. And although I will have to go off the clinical study, they will not release any of my personal information to me to help the transition. I will need to start from scratch with 2 possible dosages and 2 possible time frames. They will put me on the low dosage to start, but who knows if that will work. The danger of going off-label is that some people start a flare-up, become sick, and then potentially the drug stops working.
This system holds no compassion for patients. When I've spoken with people who work on the study and insurance companies and mention the importance of staying on a medication and dose that works for me, they don't even apologize. Their response is, "Oh well, we can't do anything for you."
I don't feel as though my health is important to these people - I know it's not them in particular; they're just doing their job. We have a broken system that doesn't help the people who truly need it.
As a lab rat, I've learned that science, over health and all else, is most important.