Across the nation, the medical community—long plagued by persistent health disparities—is acknowledging structural racism as a public health crisis. Health care systems across the country, including Mass General, are developing and accelerating creative and sustainable ways to address these alarming inequities.
There may be no better a clinical example of these seemingly intractable challenges than sickle cell disease (SCD), a serious genetic blood disorder primarily impacting African Americans (but also Latinos of Caribbean ancestry as well as people of Middle Eastern or Indian Subcontinent descent), where a lack of access to quality health care coupled with issues associated with poverty—lack of nutritional food, stable housing, and steady employment—lead to poorer health outcomes.
To provide a more supportive, multi-faceted experience where patients’ medical, psychosocial and emotional needs are met, Mass General has launched the Comprehensive Sickle Cell Disease Treatment Center. Under the direction of Sharl Azar, MD, a hematologist, the center takes a holistic, multidisciplinary and collaborative approach to treating patients with SCD.
The center treats patients older than 18 years of age, a critical juncture for many, when moving from adolescence to adulthood can be difficult. “Young people whose treatment may have been coordinated under the watchful eye of a parent can get lost in the transition to adulthood,” says Azar. “Historical mistrust of the medical community, fear of being mislabeled a drug seeker and other indignities suffered by Black and Brown people may further prevent them from seeking treatment for the debilitating pain that often accompanies this diagnosis.”
In this one-stop shop approach, hematology specialists work alongside primary care physicians. A dedicated SCD nurse, Ellen Silvius, RN, is there for medical support, and a dedicated SCD social worker, Lorrie Bertrand, helps to address issues arising outside the walls of the hospital. A partnership with Integrative Medicine provides patients access acupuncture, massage therapy, yoga and meditation. Palliative Care counsels patients on managing the pain and suffering caused by the disease, and Spiritual and Pastoral Care is brought in when patients are admitted to the hospital. Together with representatives from nephrology, ophthalmology, OB/GYN, pulmonology and complex care, the center is equipped to provide the most comprehensive services for patients and their families living with SCD.
“I want patients to feel there is somebody in their corner because this disease affects every facet of their lives,” says Azar. “We want to provide a welcoming place where our patients feel safe, trusted, understood, heard, connected and well cared for—a true medical home.”