So I know I’ve been pretty quiet here lately. Between my two jobs, a few new volunteer positions (cancer, church, and mom related), and normal shuttling of children to all the places, I’ve been pretty slammed. But I have been writing a few things lately, anytime you’re interested, you can find my latest post on my contributor page on Cure Forward. So far, five of my pieces have been published, and they focus on the ideas of precision medicine and clinical trials. If you’re interested in a cheat sheet– here they are:
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.
First of all, thanks for all the love on my last post. Being part of the MBCproject team has been an awesome experience even in the first few months, and I promise I’ll update on some of the details soon! But I also wanted to share another cool project that I’ve been a part of over the summer.
I started working with Cure Forward, which is basically a matching service to help cancer patients find clinical trials based on the DNA profiles of their tumors. Though I hadn’t heard about the company before I was approached to be part of their Precision Medicine Advocates team, I knew the patient advocate who would be leading the team, so I looked into it a bit more. It was one of the private companies specifically listed in Vice President Biden’s Cancer Moonshot to help make finding a clinical trial easier, and I love the fact that they are willing to work with patient advocates to make sure that everything they do remains focused on delivering the best care to patients in the easiest way possible.
I’ve written a few things for them, and my first post went live last week. As I tried to explore what precision medicine means to me– and why it’s exciting but not the silver bullet for all of the cancers ever (right now, at least!)– I was left with the image of a Coinstar Machine in my head. That’s sort of how we do cancer care now– dump all the patients in a sorting machine and they end up in categories that determine their treatment. Head on over to my post at Cure Forward if you want to see why I think Precision Medicine is an improvement on good-old coin counting!