The Susie Novis Durie Educational Grants, created to help member organizations of the IMF’s Global Myeloma Action Network (GMAN) increase education, awareness, and access to treatment, were given to three nonprofits groups at the GMAN summit in Copenhagen. Recipients are: Mijelom CRO in Croatia, recipient of a $10,000 Senior Grant; the Armenian Hematology Association (AHA), recipient of a $5,000 Junior Grant; and the United Against Cancer Foundation (FUNCA-Fundación Unidos Contra el Cáncer) in Paraguay, recipient of a $5,000 Junior Grant.
With the Susie Novis Durie grant award, Mijelom CRO will be able to work on several fronts to improve myeloma patients’ lives and address current limited access to treatment in the region. For example, currently there are no support groups for myeloma patients in Croatia and the Republic of Bosnia and Herzegovina (BiH), and due to the region’s impoverished state and complex health care system, patients are often unable to access the care they need. With the grant funding, Mijelom CRO will be able to translate educational leaflets into Croatian and Bosnian; create a social media campaign; work to end the practice of charging value-added taxes on donated myeloma drugs; and host a patient seminar.
The Armenian Hematology Association (AHA) will fund a 2016 Multiple Myeloma Awareness year with its grant, in order to encourage earlier diagnosis of the disease. According to Yervand Hakobyan, MD, PhD, who works in a hematology center and serves as secretary of the AHA, 75 percent of patients diagnosed with myeloma annually in Armenia are already in advanced stages of the disease. Many of these patients may already be suffering from severe bone lesions, anemia, renal insufficiency, and other later-stage damage. Awareness activities in the works include printing a book in Armenian for myeloma patients; mentoring regional doctors through teleconferences; conducting educational seminars for patients and caregivers; and co-hosting educational seminars for regional doctors alongside the Fund of Armenian Relief (FAR).
The second Junior Grant recipient, the United Against Cancer Foundation (FUNCA-Fundación Unidos Contra el Cáncer), will host a seminar for hematologists, patients, and their families with its award monies. The goal is to increase awareness so that myeloma patients can be diagnosed earlier and gain access to treatment; share best practices among doctors and patients; and to share how multiple myeloma patients can live with dignity. The keynote speaker for this seminar will be Dr. Lidiane Andino Neves (Paraguay’s Central Hospital). As a multiple myeloma specialist, Dr. Neves is one of the main providers to myeloma patients in Paraguay.