Let me first say that anyone who participates in a clinical trial, at any stage, are my personal heros. It takes a lot to put your life and health on the line and I salute the trial participants and the families who agreed to participate. I am presently on my first line treatment, a drug that was approved by the FDA in 2015, a mere 4 years ago as I’m writing this blog post. My treatment is possible because of people who were willing to participate in all phases of that ground breaking trial and I was super excited to meet one of the original participants in that trial while I was in Philadelphia for the Living Beyond Breast Cancer conference. She’s still on Ibrance nearly 5 years later and truly thriving.
Full disclosure, I’m not participating in any clinical trials right now, but I have friends who are and I’m writing this to explain what I’ve learned about clinical trials since embarking on my experience of Stage IV metastatic breast cancer.
First of all, I always thought clinical trials were a last ditch effort, something to try when nothing else is working. I’ve since learned that this is not the case. I have a friend in a clinical trial as her second line treatment! Clinical trials are available at every stage, at every walk of life, and all over the world.
Secondly, I used to think that clinical trials were something that only a doctor could find and recommend. I’ve since learned that this is not the case. Yes, doctors are a huge part of funneling patients towards clinical trials, especially if said trial is at the institution where the doctor is; however, part of self-advocacy is learning about trials and positioning oneself to be able to participate. For me, I’ve watched which trials are happening where and then traveled to that institution for a second opinion so that I’m an established patient there in order to be considered as a participant for any trials that meet my needs. I also send information to my medical oncologist about a variety of trials just about once a week. She tells me all the time that I keep her on her toes and I’m sure that’s not the easiest thing to deal with.
Third, there are very practical barriers to participating in a clinical trial for patients. Geography is a big one. So much is encompassed in the issue of geography; for example, cost, traveling, childcare, etc. The way we do healthcare in the United States ridiculously skews the likelihood of survival and good medical care towards wealthy white people. Yet another benefit of white privilege and I have a great deal of ambivalence towards the fact that I have that available to me.
Fourth, no one really understands the process of applying for Compassionate Use when a trial really is a Hail Mary for a patient at the very end. There was a lot of hype and press around the passing/signing of the law; however, the experience of it has truly been a dud. I don’t mean at the FDA level, they still approve 99% of applications, it is the drug companies that aren’t so cooperative and often send bills in the 6, 7, or 8 figures since the law says they should participate, but says nothing about sending gigantic bills that only a few people in the world could pay. Again, with the skewing towards wealthy white people.
Lastly, I still struggle a bit with the fact that drug trials in the United States are run by drug companies that have a vested interest in the outcome. The conflict of interests is astonishing. The funny part is that I didn’t think of that until I went to a conference last year and a researcher from another country pointed out how in other countries, the government runs the trials because if a drug company would, they could be tempted to skew the results or select participants to skew the results. There’s probably an emoji that represents the craziness of how that is organized.
The thing that gives me the most hope is that companies (drug, medical or otherwise) are perhaps finally listening to some of the patient advocates who speak up about disparities, issues, and work to address them. There are a myriad of non-profits that help to stand in the gap when patients are aware of them. Not too long ago, a friend posted about another friend’s difficulty with accessing a life-saving trial and the breast cancer community rallied around that situation to help. Within a few hours, she had transportation and accommodations for nearly free.
We can be each other’s village when there is a need, if only we know the needs of others. There are many selfless people working hard on the difficult problem of cancer and accessing good care. We are better together.