The patient-led Global Myeloma Action Network (GMAN) recently designated March 30 as International Myeloma Action Day to raise awareness of multiple myeloma, advocate for early detection and guarantee worldwide treatment.
March is already Multiple Myeloma Awareness Month. To mark the last Thursday of the month with this honor, GMAN launched its first “MAM goes MAD” campaign — a social media initiative involving 40 member organizations in 37 countries.
The campaign, which can be followed online at #GMANmad17, asked patients to spread the word about their disease and ask doctors and lawmakers to advocate for early detection — and to support access to new drug therapies.
“The incidence of myeloma is increasing, and it is becoming a more common diagnosis in younger patients,” Yelak Biru, one of the campaign’s leaders, said in a press release. “However, because it is a relatively unknown cancer, myeloma can go undiagnosed until the disease begins to seriously damage health. With more treatment options available, early diagnosis is vital for achieving the best outcomes for patients.”
The disease — a cancer of plasma cells in the bone marrow — affects an estimated 750,000 people worldwide. The International Myeloma Foundation, which promoted the initiative, asks that myeloma patients continue to share their stories on social media forums, to share what went on last March 30 for them and to keep raising awareness for the disease.
First founded as the Global Myeloma Alliance in 2013, the consortium became GMAN in 2014. This organization is the world’s only global myeloma advocacy group exclusively aiming to support myeloma patients.
“Long-term survival is now possible for people living with myeloma, but many patients lack access to effective treatments,” said Susie Novis Durie, the group’s president and co-founder. “Four years ago, we realized that having patient organizations around the world work together to raise awareness would be ideal to help increase early detection of myeloma in patients and improve access to new therapies, and so GMAN was developed. The International Myeloma Action Day campaign is one of the highlights of this collaboration.”
In other related news, to celebrate Multiple Myeloma Awareness Month, the Leukemia and Lymphoma Society and the National Black Church Initiative (NBCI) started a church-based initiative to raise awareness of the health disparities experienced by African-Americans living with myeloma.
The project, “Myeloma Link: Connecting African-American Communities to Information, Expert Care and Support,” is the first such collaboration between the NBCI and a major health advocacy organization.