UPDATE: New reports highlight alarming disparities in multiple myeloma treatment access for patients, particularly among Black and Hispanic communities. Despite advancements in understanding this aggressive blood cancer, research cuts threaten to widen the gap in care, as patients face significant hurdles to timely diagnosis and effective treatment.
In Montgomery, Alabama, Diane Hunter, 72, experienced debilitating symptoms for over a year before an emergency room visit revealed her condition: multiple myeloma. “What is that?” was her immediate response, underscoring a common gap in awareness and knowledge surrounding this disease.
Multiple myeloma, a cancer affecting bone marrow plasma cells, is among the most prevalent blood cancers, disproportionately impacting African Americans. The mortality rate is significantly higher among this demographic due to delays in diagnosis and treatment access. Monique Hartley-Brown, a researcher at the Dana-Farber Cancer Institute in Boston, states, “On average, patients see their primary doctor three times before being accurately diagnosed.” This delay is particularly critical as the disease can lead to severe complications, including fractures and kidney problems.
Hunter’s journey reflects systemic issues in healthcare access. Her initial visits to her primary care physician failed to yield a referral to a hematologist despite concerning test results. Frustrated, she sought a new doctor who confirmed her diagnosis. “It’s heartbreaking to see patients like Diane struggle,” Hartley-Brown added.
The Multiple Myeloma Research Foundation reveals that Black and Hispanic patients are not only less likely to receive the latest therapies but often do so later in their disease progression compared to white patients. A 2022 analysis found that Black patients comprised only 4% of participants in FDA drug approval trials, despite making up nearly 20% of individuals diagnosed with the disease.
Amid these challenges, federal funding cuts threaten to exacerbate the situation. Michael Andreini, CEO of the Multiple Myeloma Research Foundation, warned that reductions in the National Institutes of Health (NIH) budget could stifle innovation in treatment. “Myeloma-specific funding has decreased significantly,” he noted, emphasizing the urgent need for increased resources.
The fight against multiple myeloma is personal for many, including Jim Washington from Charlotte, North Carolina. At age 61, Washington faced excruciating hip pain, which led to a diagnosis of multiple myeloma. Thanks to his premium health insurance and a concierge doctor, he quickly accessed advanced treatments, including a successful CAR T-cell therapy approved by the FDA in 2021. “The prognosis is very positive, and I’m feeling good about where I am at this point,” he shared.
Washington’s story contrasts with many others who do not have the same healthcare advantages. The lack of Black patients in drug trials raises concerns about treatment efficacy across diverse populations. Hartley-Brown points to historical distrust and limited access to clinical trials as major barriers to participation.
Hunter, diagnosed in January 2017, underwent five months of immunotherapy followed by a stem cell transplant. Now a co-leader of a support group, she is an advocate for patients navigating similar challenges. “The word ‘cure’ is now being heard,” she expressed, reflecting a shift in the treatment landscape.
Despite her delayed diagnosis, Hunter remains hopeful as she witnesses change within the medical community. However, the specter of funding cuts looms large, threatening to stall progress in research and treatment access.
As federal funding decisions unfold, the urgency of addressing these disparities in multiple myeloma care is critical. Patients like Hunter and Washington exemplify resilience, yet their stories highlight the pressing need for equitable healthcare solutions for all affected by this devastating disease.
With significant advancements at risk, the call for increased awareness, funding, and equitable access to treatment has never been more urgent. The fight against multiple myeloma continues, but the path forward must ensure that no patient is left behind.
