Access to CAR-T (and other treatments)

Two interesting and related items from the medical website Healio about CAR-T and race. I think that, together, they say important things about access to this important treatment.

The first is called "CAR-T for non-Hodgkin lymphoma effective regardless of race or ethnicity." It reports on research that looked at how well different CAR-T worked for patients of different ethnic groups and races. As the researcher in charge of the study points out, some treatments are less effective for patients of different races or ethnic groups. (He says this as a general statement, rather than giving specifics, which is too bad. I'd really like to know more about this.)

However, the study found that with CAR-T, these differences don't exist. The study looked at 46 patients, and divided them into two groups: Black and Hispanic in one group, and white and Asian in the other. (Again, the article doesn't give much detail as to why they were grouped this way.) The results showed that there were no significant differences between the two groups in terms of effectiveness or safety for CAR-T.

That's obviously excellent news. A treatment as promising as CAR-T, one that seems to be getting even better with time, is effective and safe for many who could use it.

The bad news, though, comes from another Healio article from a week ago. This one is called "Study finds ‘substantial’ underrepresentation of Black patients in CAR-T clinical trials."  The title should speak for itself. Despite up to 12% of CAR-T patients being Black, one clinical trial, as an example, with 88 patients had zero Black participants. 

That's bad for the very reason that the first study is good news -- if a treatment is less effective for some groups, that needs to be found out early. It's easy to assume that a small group of patients in a trial is representative of the entire population, and that's not always true. I think about the history of heart attacks in this way. For many, many years, the only research on heart attacks was conducted on men. It was assumed that whatever was found in the research would apply to women, too. Turns out women can have very different symptoms. Goodness knows how many thousands of women were not treated properly because it was assumed they were not having heart attacks.

So, in short, I have always been a big believer in clinical trials, and I always make sure to ask my oncologist about new trials, just in case I need to consider one in the future. Since I haven't needed treatment in 12 years, I haven't needed a trial. But they are so necessary in developing new treatments. I hope all of you will at least talk to your doctors about trials near you, and whether or not they are appropriate for you. Trial participants really are heroes.

And without wide representation -- by gender, race, ethnicity, age, socioeconomic status -- we can't truly know how well a treatment is. Not just by effectiveness and safety, but also by things like affordability and Quality of Life. Treatments aren't much good if they only help a small segment of people with a disease.

So there's my rant for the day. I've heard stories lately about people who weren't able to access treatment, or who weren't given a treatment that might have been more effective for them for different reasons. I want all of us to benefit from the great advances that have been happening in Follicular Lymphoma treatment, no matter who we are.

Stay well.