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As much as things have changed, they have remained the same

| Yelak Biru

The 57th American Society of Hematology (ASH) conference started with two important pre meetings: the Global Myeloma Action Network and the International Myeloma Satellite Symposium. The Global Myeloma Action Network or GMAN, is the advocacy arm of the International Myeloma Foundation and its mission is to increase availability and access of myeloma treatment to all patients globally. With 34 member countries and growing, the GMAN meeting was attended by over two dozen patients, advocates, and organizations from around the world including North America, Latin America, Europe, Asia, and Australia. The success formula of the IMF is collaboration as evidenced through the International Myeloma Working Group, Nurse Leadership Board and various patient-centric initiatives. And to solve the access and availability problem, the group believes it needs to create collaborative relationships with Pharma companies. Three pharma companies were able to attend.

The group declared 2016 as the Year of the Advocates and strategized to create a global plan to raise the local capabilities of organizations and individuals to create locally relevant awareness and education.

GMAN meeting attendees

GMAN meeting attendees

The 15 support group leaders then attended the much anticipated IMF Myeloma Symposium focusing on “Global Advances in Myeloma: Providing Best Options for Treatment in 2015”.

I believe these IMF Satellite Symposium debates are meant to celebrate the successes of the hard work the collective myeloma community has done, but also show the need for more data to make definitive treatment decisions, the need to inject treatment decisions with patient preference, and the need to establish trust-based relationships with patients to do so. In particular, I was elated to see two of the faculty. Dr. Jesùs San-Miguel and Dr. Philippe Moreau talk about the need to include patient preference in the decision equation.

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For me, there were three highlights from these debates:

  1. Balancing treatment and outcomes is an art that in most cases requires at least a consultation with a myeloma specialist when available.
  2. Patient education is a must and could affect treatment outcome and survival.
  3. More research is needed. I heard Dr. San Miguel repeat one of the things I heard him say many years ago; “We need more accurate biomarkers for myeloma to guide our treatment.” For me, this was déjà vu and the reason for the title of my post.

Sharing the Hope!

Follow Yelak on Twitter: @NorthTxMSG
http://northtexas.support.myeloma.org/
North Texas Myeloma Group
Dallas, TX

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The 15 IMF Myeloma Support Group Leaders that are attending #ASH15

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