China Visit Strengthens Ongoing Collaborations to Improve the Lives of Myeloma Patients Worldwide
This past weekend members of the IMF’s Asia team visited Shanghai, China. There were meetings with both myeloma doctors and patients. In 2011, the IMF created the Chinese Myeloma Working Group (CMWG) with the support of myeloma experts Prof. Wenming Chen, Prof. Jian Hou, and colleagues. Joint meetings have been held once or twice each year since then. Last year, the CMWG morphed into a more formal Chinese Myeloma Committee (CMC) and on October 20th – 22nd, the 2nd Annual Meeting of the CMC and related meetings occurred. This was an opportunity for the IMF to extend educational programs and explore new research and clinical trial activities.
IMF’s global outreach in action
Prof. Xiao-Jun Huang from Beijing’s Peking University chaired the first meeting with the CMC members. After opening remarks by Prof. Jian Hou (Executive Chairman of CMC), Prof. Jin Lu reviewed and presented activities from 2015/2016. IMF President Susie Novis Durie and I then presented the ongoing and planned collaborations with the IMF, including the Annual Myeloma Master Class in Los Angeles and activation of Black Swan Research Initiative® projects in China, with MRD (minimal residual disease) testing by Next-Generation Flow set up in Shanghai, Beijing, and Tianjin.
An eager audience
The Scientific Session of the CMC convened at 8 a.m. on October 21st to a standing-room-only house of physicians. An array of international experts presented, including IMF board members Dr. Vincent Rajkumar and IMF Medical Education and Research Consultant Prof. Jean-Luc Harousseau, and myself. These comprehensive presentations covered all aspects of diagnosis, monitoring, and therapy—a truly amazing update for the eager audience.
After the packed morning session, the IMF and Prof. Hou convened a joint lunchtime meeting with four pharmaceutical companies (Jansen [XJP], Amgen, Takeda, Celgene) and representatives from the eight top myeloma centers in China. The goal was to solicit commitments to establish investigator-initiated trials (IITs) in China—which have not been possible previously. This industry/myeloma-expert collaboration is a first and provides a model for efforts to improve drug access globally. Thanks to Prof. Jian Hou and Dr. Juan Du for facilitating this inaugural meeting!
Earlier this year, the IMF met with members of the Chinese equivalent of the US Food and Drug Administration. They indicated that if pharmaceutical companies agreed, then IITs could proceed. As each company presented, it was clear that a real opportunity exists to set up IITs, which can finally allow access to the new, exciting novel agents—such as daratumumab, ixazomib, carfilzomib, and pomalidomide—in China.
Through the Asian Myeloma Network, the IMF already offers such trials throughout Asia. This next step can be a major and much-needed avenue for novel-agent access and improved patient survival in China.
Heartfelt Myeloma Master Class reunion
In the evening, a special dinner was held to celebrate the reunion of five years’ worth of Master Class participants. There is now a true sense of camaraderie among these emerging Chinese myeloma experts, who have returned to be leaders at their home universities and hospitals. A special bond exists now with the physicians who will lead the way to the next generation of myeloma care in China. The palpable friendships led to an emotional and wonderful evening, ending with a promise to meet again, along with new participants, in Guangzhou in 2017.
Another memorable patient meeting
Myeloma patient meetings in China are always memorable, and this year was no exception. Held at Changzhen Hospital, Shanghai, the meeting began with opening remarks by Susie, then members of Prof. Hou’s myeloma team presented overview information to an overflowing room of patients. With the help of translators, Prof. Harousseau and I answered a wide range of questions, at first from the audience, then individually from especially anxious patients at the end of the session.
The difficulties with drug access were clearly evident. This was particularly difficult because of the more frequent occurrence of aggressive disease, such as IgD myeloma—typically rare, but Dr. Du has seen more than 200 patients with this high-risk subtype in Shanghai. For these patients, new-drug access is essential to improve responses and survival. It is important to point out that difficulties with drug access are not unique in China. A recent New York Times article highlights access issues in the US, as well as other industrialized nations.
A double challenge faces doctors
The care for myeloma patients in China is an enormous challenge, in large part because there are just SO many patients. Doctors see between 40 and 80 patients a day, working well into the evening. With more aggressive disease in many patients and the lack of new drugs, there is incredible stress in attempting to achieve the best outcomes.
So, after a very busy and emotional weekend, the IMF team departed Shanghai, invigorated by new initiatives and truly respectful of all that myeloma specialists try to achieve for their patients in China.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.