The program is producing a variety of educational materials, sharing information across social media where its Facebook page has over 61,000 followers, supporting speakers programs that have attracted more than 2,000 health care experts and establishing a regular presence at medical congresses. It’s also cultivating partnerships with health care providers, government, researchers and advocacy groups.
“Standing in the Gaap reflects BMS’ ongoing commitment to working for health equity across patient populations and disease states,” says Winselow Tucker, senior vice president, general manager of U.S. Hematology at BMS, which recently announced a $300 million commitment over the next five years to focus on raising disease awareness and education, increasing health care access and improving health outcomes for medically underserved populations.
“At BMS we take a holistic view toward narrowing the gap in outcomes for African Americans with multiple myeloma because so many factors have contributed to it for so long,” he says. “By empowering both patients and providers with the information they need to make the best decisions possible for themselves and their patients, we believe we can accelerate and expand progress for these patients.”
Gail says she couldn’t agree more. Though Gail had read about the increased prevalence of multiple myeloma in African Americans early in her diagnosis, she wasn’t aware of any research about why those differences exist. When she would attend scientific meetings or webinars for patient education, “there was radio silence” about that. She says she has seen this change in recent years, and it’s why programs like Standing in the Gaap can make such a difference for patients.
“We are always looking for information on African Americans and myeloma,” Gail notes, adding that because she and many others have access to crucial information, such as the comprehensive educational brochure developed by Standing in the Gaap, they are able to distribute it at their patient support groups and elsewhere, including churches and health fairs.
More than a decade after her diagnosis, Gail believes African American patients have more insight into the disease and their treatment options than she had, thanks to information like this. “When you have a publication like this, you have somebody who has acknowledged that African Americans have multiple myeloma and they’re different and we’re looking at those differences.”
It’s “vital [because] it gets people more involved in the conversation about their health and their quality of life.”
More importantly, she adds, Standing in the Gaap invites people in “to be a part of the team that’s looking at the differences.”
The Road Ahead
Today, Gail is in remission for the second time, her first remission having lasted seven years. She’s hopeful that she’ll remain healthy and be able to continue to educate the African American community about multiple myeloma. She wants to help patients get the information, treatment and support needed to survive.
Despite the continuing gap, there is some good news. When given equal opportunity for care of multiple myeloma, African American patients do just as well as white Americans and sometimes even better. “African American patients also fare as well as white patients when they enroll in clinical trials,” Tucker says. “This underscores the importance of finding ways to increase African American enrollment in clinical trials as a way to narrow the gap,” he adds.
“Patients may be standing in the gap, but it’s up to the health care ecosystem to actually narrow it so there’s no gap at all.”