Me on Richard Hanania's CSPI podcast

Where we discuss the inexcusable torpor of the FDA, the Kafkaesque world of clinical trials, and how weird it is to have a job where naked men on PCP occasionally fall out of the ceiling

I met Richard Hanania at Manifest (aka “internet nerd camp”) last week and had the pleasure of being a guest on his podcast;  we discussed why the FDA’s sluggishness kills patients, the Kafkaesque state of the clinical trial system, and what it’s like to work at a job where the occasional naked man on PCP falls out of the ceiling.

Sorting Through 498,000 Clinical Trials

Podcasts are great for dialogue and idea generation, but, as with leaving an argument and having some devastating retort come to mind uselessly right before bed, it’s easy to miss some things. Go listen to the podcast! And then come back to this point: while the system is broken and confusing and obfuscatory and all sorts of other frustrating adjectives, a lot of doctors, nurses and trial coordinators go above and beyond to help where they can.

An act as seemingly simple as confirming that a trial spot will be held for Jake before we travel out of state to a hospital site to establish care is neither simple nor small. And we got that aid from multiple doctors and trial sites in March and April. At every turn, FDA requirements as well as state medical regulations make a system that is notionally supposed to protect patients into one that’s a nightmare for the patients. Problems include: 1. A lack of decentralized trials requiring patients to travel for care, 2. Not allowing telemedicine across state lines (which limits the ability to patients to establish care easily and learn about trial options out of state), and 3. It routinely takes 10-14 years to bring a drug to market (which is 10-14 years too late for dying patients). The people who work around restrictions and acknowledge that Jake isn’t just a data point, but a real person, are invaluable.

Patients get rightfully upset at a system that stymies their ability to streamline their care, and that ire is often wrongly directed at doctors. It’s like getting mad at the guy at Target for some decision that’s been made at Target corporate in Minneapolis. I’m frequently  on the receiving end of anger towards a system I can’t single-handedly fix. That anger causes so much physician burnout.

The system is also working against doctors. In a physician Facebook group, a hospital-employed oncologist asked if it was “normal” to be required to see 35 patients a day, with up to being 10 new patients. I was like: “THIRTY-FIVE?” A schedule like that allows for maybe, maybe, 15 minutes for a new patient appointment: an appointment where someone who has just received a devastating diagnosis needs to share their history, have a treatment plan determined, and be counseled. There’s no room left for patients who fall outside a standard-of-care treatment algorithm, or who might benefit from joining a clinical trial. A physician can’t provide adequate care on that schedule without sucking time away from our own lives and families. Even then, it’s not enough. I think of the countless hours Jake and I have spent on the clinical trial process. That kind of focused attention doesn’t scale. What happens to patients who don’t have strong advocates, or resources, or connections? It’s a rhetorical question: they don’t survive.

I’m developing a tool to help oncologists quickly and easily keep up with relevant, regional clinical trials so they can incorporate this necessary treatment tool without sacrificing hours of their own time outside work to stay up to date. According to a study at Tufts, only 0.2% of physicians actively refer their patients to clinical trials. Only 6% of adult cancer patients take part in trials. I hope to make it easier for both physicians and patients to navigate the system, until it hopefully changes for the better one day. If you’re interested, email DrBStillman@gmail.com.

Many of you have either been ill or supported an ill loved one. Maybe you’ve watched someone die. Under present technologies, life is a terminal condition, but there are ways to both prolong the time we have and improve the quality. The FDA is a large agency, but we have agency too. I encourage anyone interested in speaking out for a faster, more responsive FDA, expanded and improved clinical trial access, and an easier patient experience to do so. If you’re not sure how, let’s talk. There’s a better way forward.

If you’ve gotten this far, consider the Go Fund Me that’s funding my husband Jake’s ongoing cancer treatment.

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