December 4th is actually the day before ASH officially begins, often called “Symposium” day. Today, my first session was a meeting of the IMF’s Global Myeloma Action Network (GMAN). This organization started three years ago and focuses on issues such as awareness, access, and education in other countries. We share best practices such as fundraising and creating myeloma awareness. It’s always interesting to me how different countries face different issues. In the US, for example, we’re concerned with drug prices but at least the drugs are available to us. In Australia, drug approvals to date, say for Velcade and Revlimid, means they can be used individually with dexamethasone (Rd or Vd), but not in combination (RVd). GMAN continues to grow and has advocates from 34 countries across 5 continents and meets face-to-face 2 to 3 times per year, typically before or after a myeloma/hematological conference that many folks would already be attending.
GMAN attendants included MM advocates from Canada, Poland, Australia, Brazil, US, and other countries; pharma industry partners (Novartis, Celgene, and Takeda) were also present for the first time. At the meeting, Christine from Brazil talked about awareness campaigns such as “Lock of Hair.” She also spoke about campaigns targeted at orthopedists (bone docs) and nephrologists (kidney docs) to discuss what these health professionals think about myeloma when treating patients. The Australian advocates talked about calling on their country’s Congress to consider approving drug therapy combinations. GMAN also discussed possible future programs, such as “My Life is Worth It” and a “Myeloma Patients’ Bill of Rights”. Finally, one humorous tidbit, during her introduction, Susie Novis (IMF Co-Founder and President) introduced herself as Susie Novis Durie, explaining that she and Dr. Brian Durie (IMF Co-Founder and Chairman) have been “married for 21 years, and it’s about time to take his name as well”.
Next, I attended IMF Symposium “Global Advances in Myeloma: Providing Best Options for Treatment in 2015.” I estimate about 800 to 1000 people attended and watched Dr. Durie moderate a panel of myeloma experts. Panelists included Drs. Brian G.M. Durie, Shaji Kumar, Dr. Philippe Moreau, Bruno Paiva, Antonio Palumbo, and Jesús F. San Miguel. The doctors sparred off and took pro- and con- stances on four questions: 1) Will New Diagnostic Criteria and Early Treatment of MM improved Survival or Result in More Aggressive Disease at Relapse? 2) Should Risk-Adapted Therapy be used for Patients with Newly Diagnosed MM? 3) Should Minimum Residual Disease (MRD) Be Used to Guide Treatment Decisions Regarding Maintenance Therapy? and 4) Emerging Systemic Therapies: Best in Patients with Newly Diagnosed MM or Those with Relapsed Disease?
In most cases, the doctors’ recommendations encouraged participation in clinical trials (for example, for high-risk smoldering multiple myeloma and minimal residual disease) where more information is needed. Furthermore, both speakers debating question number one, agreed that we must continue to develop predictive biomarkers and Evidence-Based Medicine (EBM). For the third question debated, my concern is MRD testing is typically not yet available at our clinicians’ facilities; and even if it is, it’s not clear what to do with the data. For example, if your MRD- after one year of maintenance, does that mean you should stop or still continue until progression? Should PET-scans and CT scans be part of MRD’s definition? Fortunately, MRD testing is being incorporated into clinical trials, and perhaps, according to Dr. Palumbo, “We’ll have good data by 2020.” And regarding question number four, even though we have on-going clinical trials to help answer this question, as Dr. Kumar said “We can’t always wait for the results . . . especially for high-risk patients.”
That’s it for today. Tomorrow’s first meeting starts at 6 am with an International Myeloma Working Group (IMWG) breakfast to review this year’s publications/recommendations and next year’s plans. The meeting will be shortened however since most of the members will be heading to the first oral presentation of the day at 7:30am given by Dr. Durie, the principle investigator (PI), presenting the final Phase 3 clinical trial results for Rev-dex +/ Velcade (Rd vs RVD) for newly diagnosed MM patients.
Wishing you the best of health.
Follow Jack on Twitter: @JackMAiello
San Francisco Bay Multiple Myeloma Support Group
Meeting locations vary throughout the SF Bay