When FL Patients Have Power

I'm going to link to another article by Jamie Reno, journalist and Follicular Lymphoma patient.

This piece is called "You Say You Want A Revolution? Cancer Patients Gently Wrest Control of Groundbreaking Immunotherapy Conference."

The first part of the article talks about the ImmunoTX Summit, a two day conference in California with presentations on immunotherapy treatments for various types of cancer. Immunotherapy, of course, involves using the body's immune system to fight off cancer. There are lots of immunotherapy treatments already in use, and lots and lots more (Reno says "thousands") in clinical trials.

As he describes the conference, the immunotherapy getting the biggest buzz these days is CAR-T, or Chimeric Antigen Receptor T cell therapy. I've posted about CAR-T a bunch of times. CAR-T involves removing T cells from the patient (T cells are an important part of the immune system -- they attack invaders, but not cancer cells, which technically aren't invaders from outside the body like a virus is). The T cells are changed so recognize the cancer cells and attack them.

The results from clinical trials for CAR-T have been pretty fantastic, with a lot of success stories. (I'll remind you to take a look at the CAR-T and Follicular Non-Hodgkin's Lymphoma blog. It's put together by Ben, who had a successful CAR-T treatment, and William, whose wife had a successful CAR-T treatment). Lots of great up-to-date links to explore.

It sounds like the ImmunoTX conference was great, with lots of big names in the field as speakers.

But if you look at the title of Reno's article, there's more to it than just talk about CAR-T and other treatments. It's about patients being empowered.

And that happens in a few different ways.

I love the way he describes patients as feeling more involved in the process when they have CAR-T as a treatment. "The patient's own body is the drug," he says.

That is so cool.

I've told stories about feeling like my doctor isn't listening to me, and how frustrating that is. (You can read one of them here -- a post I wrote for the Savvy Co-Op blog.) Not only does the treatment make patients feel like they are in more control of things, but their doctors seem to actively encourage the feeling. We need more of that.

And another example: CAR-T is expensive, costing roughly $400,000 for the treatment. (I'll let you international folks do your own monetary conversions for that one.) Reno tells the story of one patient who wrote a proposal to her insurance company, showing that one CAR-T treatment, if successful, would cost less than the repeated treatments she would likely face otherwise.

That's what patient empowerment is all about.

And then there are the patients who are pushing for clinical trial reform, changing the ways they are conducted so more patients have access to them. (And it's not just patients who are advocating for this -- lots of doctors, too, especially the ones who work outside of research hospitals where trials usually take place. That's a really complicated situation, with lots of hard work to balance access, safety, and effective science, as I found out recently.)

The important thing is, patients are using their voices, and doctors and others in health care are starting to listen.

Finally, the article talks about an advocacy group called COLONTOWN, made up of colon cancer patients and advocates. They work together online and go to conferences to make sure that patients' voices are heard.

I like Reno's article because it shows so many different ways that patients can recognize and use their power to make a difference. Sometimes that's in really big ways, like trying to get clinical trials reformed. And sometimes it's banding together with others to make sure the patient's perspective is included in conversations about treatments and other issues.

But I also know that taking on big issues can be hard. A lot of us don't have the time, or the energy, to make Big Changes. It is, frankly, intimidating.

And that's OK.

Take on the small changes, but the ones that might hit closest to home. Make your voice heard by your own doctor. Ask questions and make sure you get answers. Be informed. Listen and respond. All of us can do that.

The important thing is, find the place where you have power. And then use it.