Tackling Sickle Cell Disease with Power and Policy • EBONY

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
,  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. 
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.

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
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

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

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