Recently, Dr. Wally R. Smith, the Florence Neal Cooper Smith Professor of Sickle Cell Disease (SCD) at VCU, provided an update to the RMHF Board of Trustees about the work taking place at the VCU Sickle Cell Program. Under Dr. Smith’s leadership, he and his team continue to provide essential care for patients of all ages while conducting critical research to find new treatments, additional therapies, and to better understand the disease. However, Dr. Smith made it clear that while progress has been made, disparities persist, with community-wide divestments reflecting deeper, systemic issues we must address.
Sickle Cell is a genetic disease, which results in the body producing sickle-shaped red blood cells. Because these oddly-shaped cells die quicker than circular red blood cells, patients become anemic. Additionally, these cells can block blood flow, causing severe pain and often resulting in organ damage. While primarily understood as a disease affecting Black individuals, the VCU Sickle Cell Program clarifies on their website that the disease does not single out a single race or culture. Additionally, while a small percentage of cases can be cured, such outcomes require an exhaustive, one-year treatment that includes both chemotherapy and either a bone marrow transplant, or gene therapy. However, as Dr. Smith pointed out in his presentation, a patient’s social determinants of health (SDoH) play a central role in the severity of the disease, specifically for individuals experiencing poverty and poor support.
“The New England Journal of Medicine published that about 80% of the determinants of health of individuals are social or behavioral,” Dr. Smith shared with us. “Even patients who find treatment for their SCD do not always fare well, due to social and behavioral barriers to treatment adherence and health maintenance.”
And yet, as Dr. Smith suggested, there is no doubt that the VCU Sickle Cell Program has made critical steps toward addressing both these social determinants and the overall treatment of SCD over the years. In 2021, Dr. Smith told VPM that his transitional program from pediatric care to the Adult Sickle Cell Disease Medical Home was an innovative, holistic effort aimed at reducing readmission rates for Sickle Cell patients. Smith stated “It may be one of the only programs of its kind in the country,” adding that he and his colleagues are focused on addressing inequities in the healthcare system that have too often resulted in Sickle Cell patients not getting the care they need or, once they transition to adulthood, falling through the cracks due to issues like losing insurance.
RMHF was proud to have contributed to this critical work by providing a $150,000 grant to the Sickle Cell Program 15 years ago, an investment which helped leaders at VCU build out infrastructure, increase their capacity to treat patients, and over time, help make positive strides in treatment. With community wide support, the Adult Sickle Cell Disease Medical Home launched in 2018.
However, like so many of the issues we confront with our partners in the health and racial equity space, the intersection of social, medical, and economic factors continues to reveal the disproportionate impact Sickle Cell disease has on strategically undervalued communities. RMHF Trustee, Dr. Dessie Nash has seen many of these impacts up close. Dr. Nash’s brother was diagnosed with Sickle Cell at the age of four, although it took years to reach that diagnosis. Initially, pediatricians incorrectly assumed that Dr. Nash’s brother was suffering from neglect. Sickle Cell was never even suggested as a potential diagnosis until a Black pediatrician was brought in to consult. Dr. Nash recalled that in the early days of her brother’s disease, the main focus was “getting him past fifteen.” But it wasn’t until doctors learned that the family had insurance and that her mother was a well-educated, successful professional willing to advocate for her son that the medical team started to pay more attention. “It felt like it was a different treatment plan,” Dr. Nash remembers.
The family lived in Houston at the time, and Dr. Nash credits her brother’s progress with the approach the team took with his treatment. “They looked at [the disease] from a nutritional standpoint, a lifestyle standpoint, even a familial standpoint,” Dr. Nash recalled. “There was a lot of family education so we could all understand what my brother was experiencing and what we would need to do to support him.” Dr. Nash says her brother, now 42, does a lot of research to stay informed, makes sure he gets the care that he needs, all the right tests done, and stays up to date on his treatment.
Dr. Nash was adamant that her brother’s vigilance as an adult has been essential to his well-being. She was also adamant about another reality. Despite the many inequities their family encountered, Dr. Nash noted that if they hadn’t had access to quality care, education, support systems, steady income, housing, transportation, and other essentials, the outcome would have been stark. “Without access, my brother would have died,” she said. “For 37 years, my brother has had those opportunities.”
To address these very same inequities, RMHF supported a collaboration between VCU and Virginia Supportive Housing (VSH) in 2019 to introduce a pilot program that would provide stable housing and supportive services to VCU Health patients experiencing both complex health issues, like Sickle Cell Disease, alongside housing instability. This pilot proved successful, and while it is no longer active, this collaboration continues. This partnership revealed another critical factor in the effort to treat Sickle Cell in our community: the need for sustained leadership with consistent resourcing that can focus on confronting these and other health disparities and how they intersect to negatively impact those with Sickle Cell.
It will require long-term support to sustain Dr. Smith’s tireless efforts as the leader of VCU’s Sickle Cell Program, to continue to reap the benefits of the grant RMHF provided nearly 15 years ago, to build on the collaborative partnership with VCU and VSH, and to bolster other intersectional efforts on behalf of patients with Sickle Cell. As Dr. Smith emphasized and as Dr. Nash’s story reminded us, there is much more work to do to fully address the persistent racial, economic, and social disparities that disproportionately impact strategically undervalued communities; the very work that RMHF is dedicated to engaging in, alongside our community partners. Like with so many health and racial equity issues, when the Richmond region comes together, there is a consistent track record of delivering results for those in need. Now, we are called to build on that track record, take that next step, and collaborate in ways that promise both patients and families the reliability, consistency, and stability they deserve.
To find additional ways to build on our region’s hard-won progress on behalf of those impacted by Sickle Cell, you can visit the MCV Foundation website.