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Tackling Sickle Cell Disease with Power and Policy

An expectant Black mother in America lives with the fear that her baby has a 1 in 13 chance of being born with sickle cell disease (SCD), and that her child may suffer a lifetime of debilitating medical conditions and live only into his 40s.  While SCD affects 100,000 Americans,  African Americans are disproportionately impacted by SCD.  Sickle cell disease is also one of many explanations for higher rates of illness and mortality from COVID-19 among Black populations in the United States. Although data is just beginning to be collected, findings from the Medical College of Wisconsin suggest that people who have SCD and become infected with COVID-19 are at a high risk for a severe case of the disease and a high fatality rate.  Similar to other co-morbidity illnesses Black Americans disproportionally face, social determinants including socioeconomic status, implicit health bias and healthcare access contribute to the ongoing challenges impacting people with SCD and who also are extremely vulnerable COVID-19.

The Black Women’s Health Imperative, which promotes physical, mental and spiritual health and well-being for the nation’s 19.5 million African American women and girls, sees and understands the dire health consequences that both sickle cell disease and now COVID-19 have on our communities.  As a top priority, we are addressing the challenges facing those living and working with the diseases, using our broad-based reach and power and advocating for policies that provide more equitable and adequate access to treatments for Black patients and other vulnerable patients in this country.  

Previously, there was just one drug for people living with SCD – hydroxyurea – three new drugs have been approved since 2017. Each of these new treatments can be used as monotherapy and can provide additional pain and hospitalization reduction and anemia improving benefits when used with hydroxyurea. There are also alternative options for patients for whom hydroxyurea therapy is inappropriate.  According to a report published in 2019, 17 new treatments are being developed. Despite these exciting advancements in sickle cell disease treatment, a multitude of barriers exist that could prevent access to patients who need them most.

Sickle cell disease has always been costly to manage in fact a single hospitalization can cost $10,000.  Many SCD patients are insured through Medicaid because the disease leads to disability that prevents education and work. Those who are able to work often are able to do so for fewer years because of extreme pain and tiredness, frequent hospitalizations, and organ damage, which ultimately result in ongoing and permanent disability.

Patients on several of the newer therapies are unable to access treatments for several months, due to delays caused by prior authorizations.  As new innovations for SCD including gene therapy come to market, access is expected to be a significant issue. Such therapies would be provided to patients several times over the course of months, but would not be needed as maintenance therapy for the rest of the patient’s life. They could if approved offer profound gains in outcomes for people living with SCD; however, their costs would likely be exponentially greater than current therapies on the market. We are imploring federal and state policymakers to remove existing access barriers before they prevent anyone from receiving new treatments for SCD. 

We formed a Sickle Cell Disease Diversity Alliance charged with increasing awareness with an extensive education initiative around sickle cell disease.  We recently launched a Rare Disease Diversity Coalition to identify and advocate for evidence-based methods to ease the disproportionate burden of rare diseases on communities of color. And together with the National Coalition of 100 Black Women and EBONY, we developed Our Health Our Community webinar series, a movement to mobilize, support and advocate for Black women and their families to create healthy, resilient Black communities.  We are harnessing the power of all these partnerships to ensure that policymakers hear our voices and are moved by our collective strength. 

Ultimately, what is key is access to quality, affordable, and innovative approaches that provide comprehensive health care for Black women and girls—and everyone in this country. We will not be silent until we bring about policy change that will deliver on the promise of innovation for people living with SCD today and born with this devastating disease in the future.

Tammy Boyd is the Chief Policy Officer & Counsel, which recently launched the Our Health, Our Community movement with the National Coalition of 100 Black Women, Sickle Cell Disease Diversity Alliance, and the Rare Disease Diversity Coalition.  To follow our progress on these important initiatives, learn more about our work and join us, visit www.bwhi.org.

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