2015 Global Myeloma Action Network Summit Participants
Australia, Austria, Belgium, Brazil, Canada, Croatia, Denmark, Estonia, France, Germany, Hungary, Israel, Italy, South Korea, Paraguay, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, the United Kingdom, and the United States.
Myeloma patient leaders from around the world met in June at the IMF’s Global Myeloma Action Network (GMAN) Summit in Vienna, Austria.
IMF’s GMAN Executive, Ray Wezik, kicked off the 2015 Summit by sharing the results of the GMAN survey which unearthed common challenges that many myeloma patients face globally. Ray noted that it’s very important to recognize the groups’ accomplishments: “It was wonderful to see that many groups had multiple successes, which had a positive impact on the lives of patients.”
The IMF’s fruitful daylong Summit was attended by myeloma patient advocacy group leaders from 23 countries. “We are thrilled to bring so many leaders together to strategize, share experiences, and plan for the future,” said IMF President Susie Novis in her welcome to attendees.
Patient and physician education
Summit participants shared the challenges their groups face in educating patients and ensuring physicians have access to the latest myeloma information. While always polite, the discussion was peppered with lively differences of opinion. It was all part of the constructive give-and-take among a network of groups that truly spans the globe. For example, while general myeloma educational materials may be good to share across borders, as suggested by Myeloma Australia Executive Director Steve Roach, Gabriela Simancas of Paraguay’s FUNCA foundation, pointed out a possible hurdle: “Each country is different,” she explained, “and requires information tailored to its situation.”
Susie Novis offered a possible solution that met with great enthusiasm. GMAN members could work with the International Myeloma Working Group (IMWG) to help create targeted educational materials that are relevant to the treatments that are available in each country. “The IMWG guidelines are great,” she said, “but they need to be revised to be applicable to the specific country.”
GMAN members offered examples of educational strategies that had met with success. Paula Azulay, founder of Israel’s AMEN organization, reported that her group had reached out to doctors in Israel to ensure they had the latest information about myeloma by distributing materials directly to clinics and orthopedists. “We also tried to get sessions of time in congresses of general doctors and orthopedists,” she said. “We were very often joined by a hematologist.”
To help familiarize attendees with IMF educational resources, IMF Medical Editor Debbie Birns walked the group through the 10 Steps to Better Care®, IMF Chairman Dr. Brian Durie’s myeloma treatment framework. This guides myeloma patients and caregivers through the myeloma journey, from diagnosis to long-term survival. “The most important way to empower patients is to educate them,” said Debbie, an IMF InfoLine veteran whose mother-in-law had myeloma. “If you know what’s important and convey it to patients, they can take that to their doctors.”
Expanding financial resources
Another subject of vigorous discussion was the groups’ need for funding. IMF Member Events Director Suzanne Battaglia encouraged Summit attendees to initiate local fundraising. “Events can raise funding support and, even more importantly, myeloma awareness,” she said. In working with countless families who have lost a loved one to myeloma, Suzanne added, she has found that organizing a fundraising event in that person’s honor helps the family’s healing process, providing an unexpected benefit.
Discussion of the role of government in funding myeloma research and education prompted vigorous debate. Some were of the opinion that the state has an obligation to provide health care education and advocacy. Others said they prefer to take charge themselves.
“The only person who’s going to change things is the patient,” said Aldo Del Col, founder of Myeloma Canada, and board member of the IMF. “Yes, government can be responsible for healthcare, but not for patient education. That’s for the grassroots. That’s us.”
Susie Novis offered a well-received overview of best practices in applying for education grants from industry partners. “Meet with them,” she advised. “See what their needs are. Then, go back to your team and brainstorm to come up with a program that will address their challenge.”
Access to treatment
A head count of the group underscored something the IMF knows well… Access to treatment varies widely around the world. For example, Revlimid® (lenalidomide) is not available to patients in Serbia, Romania, or Hungary. Each country relies on a different menu of available myeloma drugs, with certain regions – such as the UK, Australia, and Canada – having similar menus. But even so, patients the world over should know what the standards of treatment are, no matter where they live.
To that end, said Susie Novis, “GMAN can be modeled after the IMWG, whose members are dedicated to international collaboration to improve myeloma patients’ lives. GMAN members can also call on the IMWG member doctors in their regions for help and guidance,” she added.
IMF Board Member and patient John O’Dwyer echoed Susie’s message: “The bottom line is we need to stand up for the patients in each country. With the IMWG guidelines, you can go to any doctor and say, ‘This is what the experts say is the best way to be treated, and this is the way I expect to be treated.’” The room erupted in applause.
GMAN members agreed to meet again in December at the 2015 Annual Meeting of the American Society of Hematology (ASH). Until then, they will collaborate virtually via a global portal to continue the exchange of ideas.