Because I’ve seen this on several social media groups I mod/admin, I thought now might be as good a time as any to discuss the concept of the “Right to Try,” medical care for life-limiting diagnoses, and how clinical trials work.

First of all, it’s important to see “Right to Try” for what it is, rather than what it does. It’s a political placebo. For all the GOP’s going on about how they want to see every American get access to healthcare, improved healthcare, etc. the closest we got was Newt Gingrich’s Universal Mandate. You know that as Obamacare AKA the ACA. Since then, almost universally, all GOP efforts have been aimed at increasing the profits of their friends in the biopharma and insurance industries. And one of the key ways to do that is to treat healthcare as if it’s a privilege, not a right. Literally, since 1994 (and I have been very closely monitoring federal regulations regarding insurance since 2002, when my insurance refused to pay for my first neurosurgery because it was not an emergency, and, therefore, an elective surgery), the universal GOP move has been to limit access to care, cut research funding, and deny any services whenever possible. And then act upset and surprised when coronavirus catches on.

At this point, either you’ve agreed with that central conceit, or not; if not, there is no amount of research or personal testimonials that will change your mind. I know this because I’ve played that bad-faith argument game before, and it inevitably results in no one changing their view. What I am going to speak about is “Right to Try,” because there seem to be some very poorly-informed advocates of this law, who seem to think that it means private insurance companies will pay for treatment and testing of drugs in end-of-life scenarios. No. You’d want universal health coverage for that. As someone who was in a Phase 1 drug trial, the drug companies pay for their experimental treatment and any additional, related costs (in my case, frequent blood tests, because chemo is bad for the marrow). Right to Try is just the bone thrown to terminal patients that increases access to clinical trials without paying for any pesky general care or standard treatments. Great.

The folks I’m addressing in particular seem to think that Right to Try means that you can order your oncologist to shoot you up with tar if you think it’ll treat your cancer. As so frequently happens, I feel compelled to remind everyone that, if science had a definitive, universal treatment for cancer, it would be in the same category as smallpox — not a major health issue. No, Karen, sweat lodges will not cure anything, but if it’s not harmful and makes your cancerous husband a little happier, you might as well do it.

Untested, experimental treatments do not fall under that, “Meh, no harm, no foul, might as well try it” category because — here’s a shocker — they are untested, experimental treatments. There’s a solid chance they will actually do more harm than good. This is why experimental treatments are usually discontinued if the disease progresses — it’s not a totally wacko assumption to assume the treatment is making things worse (if the disease is progressing, that treatment certainly isn’t working). And, in that same vein, experimental treatments — in the initial stages — are usually extremely, extraordinarily specific about patient selection. I got into the Marizomib trial because my tumor had a p53 mutation, IDH mutation, and had been almost-completely removed by surgery (and completely removed by subsequent radiation treatment)(pro-tip to any newly-diagnosed folks, get your pathology report tattooed to your forehead, it’ll be critical for making decisions regarding treatment). I was, basically, as close as they could get to successful animal models, because, stick with me, the researchers knew what to expect in animal models. It’s that leap between rats and humans that things can go dramatically wrong. Usually, Phase 1 trials (in which they’re establishing basic safety and dosage recommendations) are conducted on healthy people to determine that the drug doesn’t cause any harm (primum non nocerum). Cancer treatments get a pass on that because we know they’re harmful. That’s actually a feature, not a glitch. When a small bit of you comes alive and attacks, you hit your own body with napalm and hope you survive. Cancer drugs — some of them, anyway — can start Phase 1 in the target demographic. Eventually, if they are successful (I do not have the exact statistics in front of me, but very few drugs make it past each successive safety testing step), you get to Phase 3.

This is the phase that seems to drive some of my Internet friends nuts. Phase 3 is when drugs are tested against a placebo to see if they are more effective than a sugar pill. My understanding of Right to Try is that it would expand access to investigational drugs (drugs being tested), in whatever phase they’re in, largely at the discretion of the patient and their oncologists (again, read that bit about drug testing being hyper-specific because no one likes it when people break into hives half-way through an infusion). Which means, yeah, you might end up with sugar pills, if you and your oncology team decide that Liamneesonib is a good treatment option and it’s still in development. You don’t get to bring back the Phase 1 trial, any more than you can bring back workplace sexual harassment or legal slavery (if it seems like I’m being unkind to one, specific political demographic, guess who’s been making the biggest fuss about RTT and then screaming when people actually follow the law). One of the bitterest pills to swallow with a cancer diagnosis is the realization that not even your own body is all about you; it’s not much further to admit that the medical-industrial apparatus of end-stage capitalism isn’t about you, either.

This whole, “It’s my body, I get to decide what’s best” is muddied by the vague ethics of oncologists — I don’t know if this is a cancer urban legend or not — who will design treatment protocols for patients that are not currently FDA approved, and administer them in countries with, shall we say, more relaxed standards regarding health and safety. If your current oncologist says that there aren’t any Phase 1 trials recruiting that you’d be a candidate for, maybe track down a nutjob who has an office in Florida, but prescribing privileges in Mexico City. Don’t rail on impotently about the oncologist who doesn’t endorse your plan to inhale moonshine as a treatment option (yes, people have asked me about that)(I’ve been told for most of my life that there are no stupid questions, but, let me assure you, once you hear the words “Stage 4,” you will be bombarded with utterly moronic questions) as some sort of professional failing — there’s a chance the person licensed to practice medicine might know more than you, and thinks that treatment will do more harm than good. Likewise, if that drug is in Phase 3 testing and it’s the only option available, take it and continue to look into other treatment options. That “continue to look into other treatment options” is critical; the one universal aspect all the long-term survivors I know is that they all remained vigilant about their health and cultivating multiple treatment options. But, perhaps most importantly to this piece, actually read the language of the law you endorsed, and maybe shut up when it does exactly what it was designed to do, not what you expected it to do.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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