Reflections on the 2019 IWMF Educational Forum

From Friday, June 7th to Sunday, June 9th, 2019, I had the privilege of attending the 2019 International Waldenstrom’s Macroglobulinemia Foundation Educational Forum. This year, the annual event was held in Philadelphia, Pennsylvania. I have attended a number of similar events and I always find them interesting. The events are a great way for patients to learn as much as they can about their disease from renowned experts and each organization tends to have their own approach to how the events are conducted.

I thought that the conference started off on a good note with a presentation from Dr. Jeffrey Matous. Dr. Matous kicked off the event with a slideshow that was intended as a basic overview of Waldenstrom’s macroglobulinemia (WM). This was a great primer for the rest of the forum. The presentation went into extensive detail but it never really got to the point where I couldn’t understand what he was talking about. It certainly gave me a much better understanding of the disease that made me feel more comfortable when I talked to patients later on.

One patient I talked to, Skip Michael, said that this was one of the most valuable portions of the entire event for him because it explained the disease in a way that wasn’t confusing or overwhelming.

You can find our story featuring Skip here.

Another one of the more important breakout sessions that I attended was with Dr. Heather Klusaritz, who talked with patients about how to afford their treatment. Drugs like ibrutinib, which is currently the only FDA approved WM, can run well over $100,000 for annual treatment; this isn’t helped by the fact that patients must take the drug indefinitely to control the disease.

Almost anyone with a long term disease will tell you that the costs and complication of the American health system are serious problems that undermine its effectiveness. The session made me realize just how difficult it can be to navigate the maze of uncooperative insurance companies, different Medicare coverage options (especially relevant for older patients), and the frustration of having to consider cost when determining which treatment is most usable for each patient. I think it could have been beneficial to have had a broader discussion about treatment cost and affordability outside of the breakout session as well.

One of the most useful things about the Educational Forum was the access the patients had to doctors. Each presentation ended with a Q&A and doctors were also willing to talk to patients between breaks. I think it was also important that the perspectives of a variety of different experts were shared, even perspectives that, at times, contradicted each other.

I felt like I could tell that the IWMF Educational Forum was meeting its goals because of how easy it was to talk to patients. I am generally not an outgoing person by nature but I found that patients were very eager to share their experiences both with me and one another. I don’t think patients would be so outgoing if they didn’t feel supported.

To learn more about the IWMF’s activities, click here.


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