Acceleron Pharma knows dealing with the physical toll of myelodysplastic disease is a heavy burden, but the emotional effects on patients and caregivers are too often overlooked.
That's why the pharma is teaming up with the Aplastic Anemia and MDS International Foundation (AAMDSIF) to create an online survey of patients with myelodysplastic syndromes (MDS) and their caregivers. The goal is to use the information to create resources to help deal with those mental health issues.
MDS are a group of rare blood disorders where the blood cells in bone marrow don’t mature properly. Grouped as either lower-risk or higher-risk, the latter of which carries a higher risk of acute myeloid leukemia, both types can severely affect a person’s ability to work or take care of family, as well as their quality of life. Symptoms include fatigue and short-term memory loss.
The survey focuses on the chronic low-risk category which is often treated with a “watch and wait” approach. That uncertainty can cause stress as people wait to see if and when their conditions may worsen.
“There are just some nuances to this disease—the rarity of it and the uncertainty of the treatment and the chronic nature of the lower- to intermediate-risk category—that lends itself specifically to mental health implications,” AAMDSIF’s senior director of health professional programs, Alice Houk, said.
Acceleron, along with its partner Bristol Myers Squibb, won FDA approval in April for Reblozyl to treat anemia in adults with lower-risk myelodysplastic syndromes.
The foundation has worked with Acceleron over the years, and the survey idea was born last year out of a discussion about the unmet needs of people with MDS. The survey will be shared through the foundation's database and medical advisory board, as well as through Acceleron’s contacts and social media.
The survey targets adults in the U.S. and the results will be made available to the public early next year.