Gail G. McCray
Atlanta, GA
@IMFGailMYELOMA

It’s been almost two months since the incredible American Society of Hematology (ASH) annual meeting experience. I am happy I could report during ASH that patients and families were recognized publicly as important partners in advancing myeloma research (on slides and verbally) during the ASH meeting. Seems that that simple fact empowered more of us to feel integral to the process, and should behave as such: as partners, rather than passive participants to take instructions only, in the treatment process. I heard that other patients enjoyed following the blogs from ASH and felt like part of the action.

Since ASH, I have had an opportunity to share some of my impressions and things that I learned with two myeloma support groups and others, reaching a total of more than 80 patients and family members directly. Also, I have been able to benefit from an “update from ASH” meeting with myeloma specialists at Winship Cancer Institute at Emory University.

Many of the support group members I spoke with were enrolled in daratumamab clinical studies (single agent and combination), and asked very informed questions about progress. After our discussions, many could better appreciate the debates from the experts — that there are always questions to ask; many could better understand the levels of clinical trials (phase I, II, and III) and their significance; and, many needed to know more about the opportunities to access financial support from pharmaceutical companies for their drugs.

In the post-ASH meeting with the Winship team, support group members asked more informed questions about their own treatment and seemed to follow complicated information more closely, asking questions about side effects, inquiring about possible new trials, and higher level genetic research and treatment. They had an opportunity to ask questions about racial/ethnic disparities in both diagnosis and treatment. For example, statistically more African Americans get myeloma — is there a difference in how the various drug therapies work (more effective, less effective, or the same?) among the races? (Answer: No difference in response to medications, according to current research). And since turmeric seems to have some positive effect on MGUS or smoldering myeloma, are fewer people in India diagnosed with myeloma? Does the curry in their diet help to protect them from myeloma? (Answer: No, according to current research, and Africans have the highest rate of myeloma worldwide). I believe this is part of the payoff for involving patients and families in information-sharing, from bench to bedside (clinic) to curbside (community). Information is absorbed, implemented, and disseminated more widely with a true patient/family-provider/researcher partnership.

I am sure over the next several months that more questions, issues, and conversations will take place around community tables for those who had the benefit of some information-sharing experience from ASH.

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