Student activist group Universities Allied for Essential Medicines recently announced that they will be taking their battle for clinical trial transparency right to the doorstep of the U.S. Food and Drug Administration.
In this interview, UAEM member Hanna Wu talks about her road to activism, access to medicines, clinical trials… and doing the FDA a service by washing its windows.
Q: Why will you be protesting at the FDA?
According to the law, the FDA should be making sure that all clinical trial results are made public, but the FDA is not enforcing the law. We want to spread awareness of the importance of transparency – how can we teach that to the FDA?
Essentially, window-washing has historically been done by UAEM-ers to spread awareness at universities to enforce clinical trial transparency. But nothing at the university level will really change unless there is enforcement from a higher institution like the FDA.
So, we wanted to take this window-washing to a higher level, to the FDA, and demonstrate to them how to wash windows so they can wash other windows, or enforce the transparency of other clinical trials.
Q: How did you get involved with activism?
I’ve always wanted to be a doctor since I was really young, I can’t actually quite remember since when, and COVID-19 awakened something in me as I think it did for many others. I did a bit of healthcare journalism during my senior year of high school at the peak of the pandemic, but really I spent a lot of time wishing I could do more about the injustice I was reading about on the news, like equitable distribution of COVID-19 vaccines or Black Lives Matter, since my parents really didn’t allow me to go anywhere.
When I found UAEM [Universities Allied for Essential Medicines] in my freshman year at college and saw what real advocacy work really is, I started thinking about what it means to be a good doctor – I don’t want to just treat patients for the symptoms that they have.
I don’t come from a super affluent family, both my parents are immigrants. I distinctly remember shadowing a doctor who had a patient come in in a wheelchair with severe bone cancer in his sternum. He was obviously in a whole lot of pain. Bone cancer is one of the most painful types of cancer. The whole situation made me incredibly sad.
After the appointment, the patient was calling a friend, and I couldn’t help but overhear the conversation. Essentially, he was calling a friend for twenty bucks for some pain meds and transportation back home. That really broke my heart. The doctor I was shadowing was extremely compassionate, but as a doctor, you can’t just give money to your patients for their meds. You give once, and you’ll have to keep giving and more patients will ask.
So I realized a doctor can be quite limited when it comes to changing systemic issues in healthcare. I want to be a doctor that shapes policy.
So, I started off with an interest in medicine, then public health and health disparities, access to medicines came afterward, and clinical trial transparency is just an aspect of that.
Do you have a personal link with the issue?
We have a close family friend who recently passed away from liver cancer, it was terminal, there was nothing we could do, no other treatments. But I know he was involved in a clinical trial, and it worked to some extent and bought him probably an extra year, but at some point, his cancer just kept progressing and the doctors said there was no use continuing the trial.
He enrolled because there were no other treatments, and he thought “I might as well benefit the rest of society”.
He enrolled because he wanted to benefit others, as well as to gain access to the most innovative research himself. In the case of my family friend, I believe the family did get access to the results, but many other patients do not.
That made clinical trials become real to me. Sometimes people enroll in as healthy volunteers as I’ve seen at Hopkins, but people generally enroll when nothing else works. Regardless, when you enroll in a clinical trial, you want your results to be made public to benefit somebody else. I spoke about this with my mother and she assumed clinical trials were being reported. But they’re not.
It rubs me the wrong way. Why are results not being reported? Are trial sponsors just lazy? Is the process of reporting too difficult? Is there no incentive to report?
The law says the FDA is supposed to enforce clinical trials being reported. Why aren’t they doing that? Otherwise, there is no accountability. It seems like such a simple ask for the FDA to just send preliminary warnings to clinical trial sponsors if they’re not reporting.
Also, many trials are funded by taxpayers in the first place. Why pay twice? You don’t want your money to go towards a trial that is repeated twice. It makes sense that the FDA follows the law, and enforces the law.
So what exactly are you planning to do?
On the first of May, we are going to wash the windows at the FDA.
There are no gates around the FDA, we looked at the headquarters, we looked at the map, and the front door like many federal buildings are made of glass. We won’t be blocking roads or walkways. If they ask us to move out of the way, we’ll move out of the way.
It’s a rather innocent thing to do. Our hope is really to do them a service and show them how to wash windows.
We’re not being obnoxiously loud, just peacefully asking them to do their due diligence in keeping the public safe, responding to the citizen petition filed by UAEM—to enforce clinical trial transparency. To make the windows of other institutions transparent.
Hanna Wu is a sophomore majoring in Anthropology and Medicine, Science and Humanities at Johns Hopkins, and a member of UAEM. This op-ed contains more information about the planned protest and about UAEM’s campaign to improve clinical trial transparency in the United States. Hanna Wu is on Twitter.