The Policy, Politics, and Law of Cancer: A Patient's Perspective

A few days ago, I was fortunate to be able to attend a conference called The Policy, Politics, and Law of Cancer, put on by the Solomon Center for Health Law and Policy at the Yale Law School.

I've written before about how much I'd like to attend a cancer conference, like ASH or ASCO, in person. This one worked out: I live nearby, my work schedule let me take a couple of days off, and the Solomon Center was kind enough to let people like me attend.

This wasn't like ASH or ASCO -- it wasn't a meeting of cancer researchers who were presenting information about the results of clinical trials. Instead, it was about policy in the United States -- the laws and regulations behind clinical trials, treatment approvals, insurance payments, and those kinds of things.

My Cancer Nerdiness has no limits. Give me a medical journal with BTK Inhibitor trial results, and I'm all over it. Let me be in a room with a bunch of law professors talking about legal rulings for the ownership of cancer patient tissue samples? Yes, please.

And the lineup of speakers was pretty amazing. One of the organizers called it "astonishing," and that wasn't really an exaggeration. The people who spoke included a winner of the Nobel Prize in Medicine; the winner of a Pulitzer Prize for his book on the history of cancer; the President-Elect of the American Medical Association; the Chief Medical Officer of ASCO (the American Society of Clinical Oncology); the Chief Medical Officer of the American Cancer Society; the Director of the National Cancer Institute; a former FDA Commissioner; Acting Director of the FDA's oncology office; heads of cancer-related nonprofits; officers from large and well-known cancer research hospitals; a whole bunch of professors from some big name law schools and medical schools; and a few others with important positions (and opinions) that have an effect on how cancer patients are treated.

As patients, we tend to focus on the clinical part of it all -- which treatments are available, which will work best, and which will give me the fewest and most manageable side effects. But before we sit down in the treatment room, there is so much to the process that we don't see, and that we aren't much involved in. And that process has problems. That's what this conference was all about.

The conference lasted a little more than a day -- a panel and a keynote speaker Thursday night, and four more panels and a speaker on Friday. I have about 20 pages of notes from the sessions. I'm not sure how much detail is worth sharing here. But there are definitely some lessons for patients to be learned.

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The overwhelming feeling that I had as I sat there listening to these folks was, This is all really, really complex. The panels were put together really well, with each of the panelists representing a different perspective on a topic. So, for example, for a panel on the costs of developing drugs, the panelists included someone from an investment firm (who might put up the millions of dollars it costs to develop a drug), a pharmaceutical company (who does the research, testing, and marketing of the drug), the FDA (who approves and regulates the drug), a cancer hospital (who gets it to patients and figures out how to make sure it is paid for), a law professor (who studies legal and policy issues on this topic), and the head of a nonprofit (who represents the interests of patients).

With each of those people giving their point of view, it was pretty easy to see why there are problems with the whole process -- getting patients into trials, the high cost of cancer treatments, deciding who gets government support for their research, the frustrations that companies have with the approval process. Everyone makes a good case for why their problems are important.

And that was just one panel. There were four more like this, with even more perspectives being given. With everyone doing a good job of representing their perspective, it's easy to see why it all came off as overwhelmingly complex.

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If there was a perspective that seemed to me to be under-represented, it was the patients'. Of course, being a patient myself, I would think so. And I also get that, when they were putting this all together, there were only so many chairs that could be filled on the stage, and honestly, if I had to choose between a Nobel Prize winner or a legal expert and a patient, I'd probably leave out the patient.

And that isn't to say patients' voices were left out completely. Just that I would have liked more of them.

But the voices that did represent patients were loud. And that made me happy.

Those voices included Nancy Goodman, founder of Kids V Cancer, who openly disagreed several times with panelists who seemed to put other interests ahead of patients' interests; Ellen Sigal, founder of Friends of Cancer Research, who had to remind her panel a few times that the patient perspective had to be included in these discussions; and Dr. Barbara McAneny, incoming President of the AMA and a community oncologist (one who doesn't work in a big research hospital), who pointed out the problems that clinical trial design have that result in difficulty with recruiting patients (making it hard for those who have to travel, for example).

These weren't the only voices representing patients. But they were the ones that I drew big stars next to in my notes.

Now, given the lineup, I wasn't really expecting most participants to be patients advocates. Most of them would probably argue that they do have patients in mind. Drug makers ultimately want to develop treatments that help patients, after all. But they also need to make money for shareholders -- that's their first priority. Even hospitals are pro-patient. But they also need to make sure the hospital stays open -- they have to focus on getting paid. No one expects them to give away care for free. (At least not in our current system.)

Ultimately, the purpose of the conference was not to come up solutions -- no one expected 24 hours in Connecticut would solve problems that are this complex. The purpose was to shine a light on the problems, as one speaker put it.


And a light was certainly shone. If there was one thing that everyone agreed on, it was that the system was broken.

How to fix it is the problem. Everyone wants a solution that will benefit them, or at least not make them give up too much of whatever benefit they have now.

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So what does all of this mean for patients?

Well, to me, it seems clear that most of the players in this game are in it for themselves. That's not a criticism, really -- it's a reality. As several speakers pointed out, the system of developing, approving, and paying for cancer treatment has evolved in a way that will make it unsustainable. At some point in the future, treatments will simply be too expensive, even for patients with health insurance. At some point, something -- or many things -- will need to change.

So patients need to make sure our voices are heard.

The easiest way to do that is to become an advocate. (And when I say "easiest," I mean the way that is most straightforward, not the way that will involve the least work). I know from your comments and emails that you are all used to being advocates for yourselves, making sure you get the best care. It's a lot more work to be an advocate for other patients, too.

Sometimes it's lonely work.

If that's too much (and I completely understand that it can seem overwhelming), the next best thing is to support organizations that work for patients. Many voices, speaking together, can get very loud.

Patients Against Lymphoma, the folks who run Lymphomation.org, are active in representing patients. Their site has an advocacy page that is worth looking at.

The Leukemia and Lymphoma Society is also active in advocacy. They make patients aware of issues that need patient voices.

The Lymphoma Research Foundation does the same thing.

And there are plenty of local agencies, too, that fight for patients in their states.

The fact is, there are limited resources when it comes to helping cancer patients, and they are even more limited when it comes to helping lymphoma patients, specifically. You don't need to lead your own nonprofit organization -- not all of us can do that. (Pretty sure I can't.)

But a phone call or an email, letting people know what you think, can go a long way toward making sure that decisions are made in ways that give the most help to patients.

If I learned anything at the conference, it was that those patient voices are desperately needed.

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I want to thank the organizers of the conference, for getting all of those great people together in one place, and for letting me be a part of it.

I'm glad I could see that light being shone.

(But there's still lots of work for all of us to do.....)