The Thing with Clinical Trials

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Yes, that’s me working on my computer in a quiet corner while my kids are at the pool. Talk about multitasking.

Having the kids home from school over the summer while I simultaneously started two new jobs made things a little hectic. Couple that with family travel and dealing with the loss of a friend to breast cancer and writing my first eulogy, I was pretty much in survival mode. Things got done, but mostly only the urgent things got done, and then only just before they absolutely had to. So this week I’ve been trying to catch up on things that got put on the back burner, and I’ve been trying to think about some things in a bigger context.

So for a day or so this week, I started wondering about the wisdom of accepting two jobs at the same time. I’ve wanted the position with the MBCproject at the Broad for over a year, it definitely falls into the dream job category, and I accepted the position at Cure Forward before I knew that the MBCproject was going to work out. It wasn’t something that I’d been looking for, but I loved the idea of a company valuing the patient voice enough to build a team of advocates. That’s a big thing, and I wanted to be a part of it. Still, I don’t want to feel like I’m selling out, offering to speak for anyone who will hire me. I wanted to be sure that both projects were a good fit for me.

But then today I was answering some interview questions for an upcoming feature on the Cure Forward blog. Because they match patients with clinical trials, the interviewer wanted to know what I thought about trials. Well, friends, they are super important. That’s how the FDA knows if a drug is safe and effective to treat disease. The problem with clinical trials in cancer is that only about 5% of cancer patients participate in a clinical trial. Now, to be clear, not all patients need to be treated on a clinical trial. Sometimes there just aren’t trials for that cancer. But there are a lot of people who could be on a trial but just don’t know about them. That’s so sad. It keeps a potentially good drug from a patient, and lower recruitment means it will take longer to figure out if a drug is good. I think we all agree that getting a good drug to patients faster is the best outcome. There are also a lot of people who would like to be on a trial that would treat their tumor, but a long list of exclusionary criteria keeps them out. All those exclusionary criteria keep the trial neat and tidy– it’s easier to analyze results that aren’t muddied with heavily pretreated patients or patients who have other health issues, too. But not including patients in the trial who will be ultimately treated if the drug is approved seems like a misstep. This is obviously a big thing to fix, and I’m so heartened that every time I hear Rick Pazdur speak (he’s the acting director for the Oncology Center of Excellence at the FDA), he talks about finding ways to fix this problem. Still, there are so many patients who will never be on a trial, either because they don’t qualify or they live too far from a center, or they just can’t find the trial that’s right for them, and their experiences are important, too. Finding a way to capture and analyze the real world experience of all treated patients would be a game changer.

More data is what drives science forward. So today it occurred to me that all my interests really are aligned. Cure Forward is trying to break down that first data barrier by helping patients find clinical trials that will work for them, and they make it easy on the patient to participate. The MBCproject is trying to move science forward on the back end– capturing all the clinical and genomic data after the fact, including every single metastatic breast cancer patient, not just those 5% that could participate in a trial. They make it easy for the patient to participate, too. Both these groups are moving the science of cancer research forward in an important way, and they are including patients in the process. So I’m on board. If someone is working hard to move the science of cancer research forward and they want to include a patient voice in the process, I don’t see a downside. It’s going to take a lot of different people working in lots of different ways to make an impact, and I hope that lending my experiences might help patients participate in moving science forward for us all.

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