Being a stage IV cancer patient on a clinical trial during a pandemic
A Q&A with Jessica Buscho, California-based colon cancer advocate, on the challenges of clinical trials during coronavirus
Summary: Ancora.ai sat down with Jessica Buscho, a California-based colon cancer patient and advocate, to discuss her experience being on a clinical trial during an unprecedented pandemic. She highlighted key challenges around finding a trial, enrolling, traveling to the site frequently, managing childcare, and paying for accommodation. These issues raise concerns about health inequalities for underserved populations, but Jessica also noted that more remote, digital trials could benefit all patients, even after the pandemic is under control.
Q&A
Ancora.ai: Thanks for joining us to share your experiences, Jessica. We know you’ve been through a lot recently, especially with the pandemic happening right as you were looking for clinical trials and enrolling on one.
Jessica: I would love to talk to you about obstacles patients face. It’s hard to explain to people who aren’t living with a debilitating disease (Stage IV colon cancer). These obstacles add up to be nearly insurmountable.
Ancora.ai: What have the main challenges been during this time? Maybe you can explain a bit, both in terms of the trial process and more generally being a cancer patient during an unprecedented public health crisis.
Jessica: Well, first of all patients face challenges to get second opinions at major cancer centers right now due to travel restrictions and many can’t get treatment at top places like MD Anderson or other major cancer centers located in high covid areas. There are so many logistical and travel problems, such as housing and risk of exposure during travel away from home. Luckily my doctors at UCSF are in touch with what patients are experiencing for the most part, but I’ve found that many doctors, regardless of location, just know of the trials at their center or really high profile trials. It’s just too hard to keep on top of constantly evolving research, new discoveries and all the options. It is also difficult to be living as an immunocompromised person during this time and being on experimental treatment. The risk of covid is increased for cancer patients and there are many unknowns with regards to how covid will affect someone depending on their medications. For me personally, my cancer has a mutation which narrows things down a lot. I used this information, my doctors’ opinions, consultations at other major cancer centers, information sourcing from other colon cancer patients and personal help from an oncologist friend to look for trials. Without all this, it would have been hard to find the right trial.
Ancora.ai: We’re definitely thinking about ways to help patients better compare trial options to address this challenge. It’s hard for both patients and doctors, especially in cancer where treatments are becoming more targeted and this leads to lots of specific eligibility criteria.
Jessica: Definitely, my oncologist friend basically translated the trial language for me because it is written for professionals and much of the time they don’t have time to break it down for us. There are also lots of other challenges, such as medical records. I had to hand carry my last 3 scans to my appointments. I don’t understand why we can’t have more efficient information sharing (with patient permission). My husband is an engineer and works with large computer netwoks and he’s dumbfounded by it. All of these medical centers within the University of California system and they don’t use the same systems.
Ancora.ai: It really shouldn’t be so hard, especially when time is of the essence.
Jessica: Exactly - I had brain surgery in May and then after that I was looking for a trial. Challenges getting on a trial meant that I spent 7 weeks off treatment, and during that time my cancer kept growing. I needed to go for a trial because I completed the first line of chemo and needed more options. I’m also so conscious of how lucky I am. I really have every resource. My husband is luckily employed, I’m engaged with the right communities online, I have a science background from college, I’m literally a white, middle class woman and I live close to care. It’s the best possible setup and it’s still tough. If it’s this hard for me, I can only imagine what it would be like for someone with less resources.
Ancora.ai: Once you found the trial you wanted, how did you actually get enrolled?
Jessica: The trial I originally wanted had a huge waitlist and then they stopped enrolling colon cancer patients. Then a few others started and someone gave me the personal email of the principal investigator on one. I reached out and cited the person we knew in common and he said to come in for an appointment. The trial was full, so I moved to second-line chemo but continued progressing. I went to see him again and it was still full so I started another trial. Then the brain mets showed up. Brain mets excludes me from nearly everything, unfortunately. Finally after a year I asked again, pretty desperately, and they had actually just opened some more spots for colon cancer on the trial without a brain met exclusion. The doctor was such a nice person, super motivated, and he enrolled me in the trial in 4 days over a holiday weekend after completing many, many tests.
Ancora.ai: That’s quite a long journey. Now that you’re enrolled, how have things been working on the trial and with the coronavirus situation?
Jessica: The trip is every 3 weeks. I’m working with them now to try to hopefully reduce that to every 6 weeks to do some appointments locally. I know FDA and cancer centers are doing what they can to make sure trials can keep happening. The pandemic isn’t just going to be a month or two for people like me. We need to think long term for cancer patients and these trials, and we won’t be able to have a live vaccine - so that will make the wait even longer. The travel for a family of 5 is particularly difficult, and now that my kids have started distance learning for school we have additional obstacles. Before coronavirus, when I was previously hoping to enroll in this trial, I would just take a short 1 hour flight to Southern California and could go there and back in one day. Now it's a 6 hour trip each way which requires an overnight stay in a high covid area. Both the drive and the stay bring risk for exposure to the virus.
Ancora.ai: Once you get to the site for your treatment, what happens, is it different from your previous trial experience?
Jessica: My husband or a friend used to go with me to every appointment, now caregivers are not allowed. Not having a caregiver is hard. I know of a patient who is dying and didn’t enroll in a trial because his wife wouldn’t be able to come with him. When you’re getting a novel drug you kind of want a “babysitter” - someone to keep an eye on you while nurses are caring for other patients. I’ve had reactions to drugs in the past so it’s scary not having anyone with me. The nurses are also stretched thin because so many are on leave due to COVID-19 exposure. Sometimes they’re from other departments due to staffing issues so they are not as familiar with your treatment. They’re also doing fewer labs than on my other trial, there’s not as much lab capacity so I hope they’re getting the data they need and will be able to get good information and complete the trial. It also takes forever to schedule screenings like MRIs, which used to take a couple of days and now take a few weeks. My 7 week delay to get on the trial was due to trying to get scheduled for the right scans. They have to have a long cleaning time between each patient, which slows things down. I think if COVID-19 wasn’t an issue maybe more trials would have been available closer to home, as well. There just weren’t as many options and there was a long period when they weren’t enrolling so the waitlists are long. I’ve seen a lot of people pass away waiting to enroll. It has been a very hard time in the cancer community.
Ancora.ai: I think you’re right, the pandemic paused a lot of research progress and catching back up will take a while. We’re seeing a lot of digitization in the trial journey for the first time and maybe some of that will stick and trials can be more remote in the future. That could be a positive for patients.
Jessica: I think reducing trial travel would be a game changer for patients. Some nurses are doing house calls now for labs and infusions. There are just so many benefits from telehealth - I am a big fan. Telehealth also opens up possibilities of consultations with oncologists outside my immediate area. Telehealth with my doctor means reduced time and anxiety related to medical appointments. Going in person means my husband has to take time off work, my kids need to miss school. We make it work, but many patients can’t travel to a trial and this is a big health equity issue.
Ancora.ai: I’m so glad you highlighted that, because it’s exactly what the data on diversity in trials shows. Lots of patients aren’t able to join trials for purely practical reasons, and this means that they don’t get to benefit from early access to novel drugs and also that research isn’t reflective of the true population.
Jessica: I found that when I started going to the clinical trial floor everyone looked oddly similar, it was noticeable and weird to me. It’s not a cross-section of society.
Ancora.ai: I know you’ve said several times how lucky you are in some ways, but maybe you can also talk about the barriers that still exist. I know parking costs are even a challenge for many people.
Jessica: Parking fees are ridiculous. I feel like going through cancer is hard enough, charging patients $20-$30 a day to receive treatment, especially on a clinical trial adds insult to injury. Can you imagine someone choosing between treatment or not because they cannot afford parking? Travel is also not sustainable. I have to travel with my family 6 hours back and forth every 3 weeks. It impacts the accommodation we have to book. We can’t get childcare because with the pandemic. Someone could expose my children, who would expose me, and then I get sick. The other day I was at the cancer center and someone had their toddler with them at their appointment. Luckily my kids are old enough and I have my husband with me so we don’t need to do that. They have to allow children to come now because childcare providers could expose kids and then they could be vectors for the virus. We were staying in Airbnbs and the last one had rat poop in it. We’re doing a Gofundme campaign for an RV because these costs every 3 weeks aren’t sustainable and also with the pandemic it isn’t safe to travel and stay in places where you don’t know how clean they are - we travel with our own pillows now, for example.
Ancora.ai: We really love the commentary you’re sharing on social media about your experience as well. Lots of these issues have not been visible previously and it’s eye-opening. I think your Gofundme has been amazingly successful so far, once people realized the challenge you had and that there was a logical solution.
Jessica: The pandemic has really exposed and highlighted existing inequities in trial access while adding even more challenges. I’m grateful to be able to use my voice on social media to share my experience while demanding we do better as a cancer care community. Luckily, some local news sources have also shared my story, which has opened even more eyes to what cancer patients are going through and challenges in treatment. As for the GoFundMe,it really had an amazing response. The community where I’m from in Sonoma County people just come together to support each other, and we have so many friends and family from every part of our lives who have eagerly contributed. The RV is a tangible thing that will make a huge difference and our community is excited to see that for me. It’s necessary to explain the challenges to people not in the cancer / immune compromised world - I felt unsure they would understand, but it seems they have.
Ancora.ai: It’s really valuable that you’re raising awareness about these problems, because it also benefits so many other people. There are a lot of things we can do to support cancer patients right now as this situation affects them so disproportionately. Thanks again so much for sharing your experience with us and best of luck with your clinical trial journey during this challenging time.