GMAN members play a critical role in improving the lives of myeloma patients in their countries. We are fighting against a global disease, identifying priorities and supporting innovative solutions. The projects chosen for Susie Novis Durie Grant 2018 show great promise and were selected for both their creativity and awareness of the current landscape in multiple myeloma.
Comunidad Española de Pacientes de Mieloma Múltiple (CEMMP) from Spain has started developing a smartphone application for patients and healthcare professionals, educating them on the role lifestyle and nutrition play in patient health. The Spanish Community of Multiple Myeloma Patients has designed Mimove app to solve a problem that myeloma patients struggle with every day: there is a vast quantity of contradictory information available about nutrition and healthy lifestyle habits, compatible with this disease. Patients are exposed to many confusing tips about nutrition and physical activity. Myeloma patients have questions such as: “What should I eat to feel better?” or “Can I practice any sports?”
Mimove offers “a personalized road map” to learn to eat healthier, including some advice for physical activity, based in part on the patient’s mood and strength. The patients will also be able to track their clinical tests in order to see the evolution of results. There will be a collaboration by dieticians specialized in myeloma, personal trainers, and hematologists that will oversee the information provided. As it is an application for smartphones, the information is readily available and up-to-date. It will also offer the patient the possibility of sending statistical data on his physical activity, mood, and nutrition to the doctor! As this app may be interesting for any myeloma patient, no matter where they live, after launching the app in Spanish, we are considering the possibility of launching it in English as well.
The Israeli Association of Myeloma Patients (AMEN) will use social network and publicity to raise awareness about early detection of myeloma among families and physicians. A study among 200 myeloma patients found that the time elapsed from the appearance of symptoms to diagnosis of multiple myeloma was 6 months when using a family doctor and 10 months when seeing an orthopedic doctor on average. Late diagnosis causes unnecessary suffering and complications due to the disease. In order to shorten the time of diagnosis, it was decided to embark on a unique project aimed at advancing the early diagnosis of multiple myeloma by both family and orthopedic doctors. The chairman of the Hematology Association and chairman of the Orthopedic Surgery Association gave their patronage, and the association invited the doctors to receive information that will assist in early diagnosis. AMEN produced short movies that were sent to 5800 doctors by mail and were advertised on relevant web sites and promoted in social networks.
In Israel, there are almost 500 newly diagnosed myeloma patients every year. This awareness campaign will improve the time period for early diagnosis and will help patients to suffer less from bone fractures, anemia, and kidney problems.
Myeloma Canada is using the grant to develop the Myeloma Advocacy Program called MAP which raises awareness for patients, caregivers, and healthcare providers. Access to effective cancer treatments is a right of every patient. By working together, the stronger, louder, unified patient voice has clearly demonstrated that it can make a difference in the Canadian myeloma community.
In recent years, several game-changing therapies have become available in Canada. Although many patients are living longer and enjoying productive lives, reimbursement and timely access to new therapies remain a challenge for many patients in all Canadian provinces. As such, with the help of the Susie Novis Durie Grant Myeloma Canada received in June 2018, we have created an advocacy platform where citizens can take action. This platform, Myeloma Advocacy Program (MAP), is accessed via the Myeloma Canada website: http://www.myelomacommunity.ca/. Individuals log onto MAP to create an individualized letter to be sent to their local member of parliament or candidate running for office.
GMAN and the Susie Durie Novis grants are bringing people together to effect change in the myeloma community. By connecting those impacted by myeloma within each country and across the world, communities are learning from one another and building off one another’s successes. Ultimately, the lives of myeloma patients are improved and extended through the body of work supported by the Susie Durie Novis grants.