Sickle Cell

Sickle Cell Awareness

What is the most common genetic disease in the US?

Sickle Cell Anemia.

Those who live with sickle cell have altered, "sickled shaped", red blood cells that get stuck in blood vessels, block blood flow, lead to pain and ultimately damage organs. The disease is most prevalent in people of Sub-Saharan African, South Asian, Middle Eastern and Mediterranean descent. And at least 1 in 500 African Americans in the United States have the disease.

The molecular basis of sickle cell wasn't discovered until 1956 and people with the disease tend to die on average 30 years sooner than people without it.

Stigma around the disease is heavy, as most patients with sickle cell often require opioids for chronic pain management and struggle to relay their "invisible" disease symptoms even to healthcare workers. This stigma has lead to health inequities in care and innovations for a cure.

Because of underfunded programs for adult care programs there are only ~50 sickle-cell centers in the US to date and an undervalued market size for treatment (in our opinion).

Gaps in care for this disease are wide but do serve , as always, as opportunities for improvement with technology. So far, digital behavioral interventions for promoting medication adherence and for symptom and disease management and apps that screen and track diagnosis have started to emerge.

We hope to see more innovations that seek to educate and support the care or cure of all sickle cell warriors - sooner than later.

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In the News

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Children With Sickle Cell Anemia Using Medicaid Less Likely to Get Stroke Screening, Pain Management

AJMC

Gene therapies for sickle cell disease come with hope and challenges

Science News

Erasing The Stigma Of Sickle Cell Disease Through Advocacy

Essence

Sickle cell anemia is a genetic mutation that causes rigid red blood cells to clump together. It can cause chronic anemia, pain crises, and widespread organ damage. After a stem cell transplant, the patient becomes a carrier of the sickle cell trait (AS) meaning the disease can still be passed on to children. In the sickle cell community, advocacy is multi-dimensional with a focus placed on protecting the patient's rights and proposing policies that deliver high-quality care. Diverse perspectives in the media have the power to transform prejudice into empathy and make the invisible visible.

Less Than Half of Kids With Sickle Cell Anemia Receive Recommended Care

PEW

When Actions Speak Louder Than Words-Racism and Sickle Cell Disease

NEJM

No adult left behind: bridge the health-care gap for sickle-cell disease

Nature