World Sickle Cell Day

June 19, 2020
Today, June 19, is Juneteenth, commemorating the end of slavery in the United States. It’s also World Sickle Cell Day, to raise awareness and understanding of a disease that disproportionately affects African Americans in the United States. So, today, we’re dedicating…
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Today, June 19, is Juneteenth, commemorating the end of slavery in the United States. It’s also World Sickle Cell Day, to raise awareness and understanding of a disease that disproportionately affects African Americans in the United States. So, today, we’re dedicating Good Day BIO to the latest news on what biotech is doing to fight sickle cell disease as well as the disease of racial disparities in health care, in around 550 words, just under 3 minutes.

Before you log off for the weekend, don’t forget to register for the Duke-Margolis Center for Health Policy’s webinar on Monday about how we can ensure sufficient manufacturing capacity for COVID-19 therapeutics, featuring BIO’s own Dr. Michelle!

On World Sickle Cell Day, a reminder why diversity matters in biotech

Today is World Sickle Cell Day, an international day to raise awareness and understanding of a disease that can cause debilitating pain and lifelong complications—and in the United States, disproportionately affects African Americans.

What is sickle cell disease? It’s an inherited, lifelong disease in which the body makes “sickle-shaped” red blood cells that can block blood flow, causing pain, organ damage, infection, and other serious complications, as MTS Sickle Cell Foundation explains.

In the United States, it disproportionately affects African Americans. The vast majority of sickle cell patients in the United States are black or African American, with 1 in 13 born with the sickle cell trait, according to the Centers for Disease Control and Prevention (CDC).

But there’s hope for people who suffer from it—thanks to an innovative biotech company. In November, the Food and Drug Administration (FDA) approved Global Blood Therapeutics’ Oxbryta, the first drug that attacks the underlying cause of sickle cell disease. 

And GBT has a black CEO and majority-minority workforce—a reminder of why it’s so important for biotech company leaders and employees to be representative of the patients they serve. 

And finally, the disease is receiving more and more scientific attention, as STAT News recently reported.

But there’s still much work to be done to end racial disparities in health care and in the biotech industry. We’ve seen this play out right now, as African Americans are also disproportionately affected by COVID-19 primarily due to long-term disparities in access to health care and exposure to risk. 

What can we do? We talked about some solutions during our must-watch discussion on equity, diversity, and inclusion during BIO Digital, which featured GBT’s Dr. Ted Love and Cerevel’s Dr. Tony Coles—and we can start by healing our social genome.

Want to learn more about GBT and sickle cell disease? Listen to our sickle cell episode of the I AM BIO Podcast, which featured GBT’s Dr. Ted Love and Mapillar Dahn, Founder of the My Three Sicklers Sickle Cell Foundation, who has three daughters born with the disease.

Want to learn more about what your company can do to improve diversity and inclusion? Visit www.rightmixmatters.org, BIO’s campaign to provide specific tools to accelerate gender, racial, ethnic and LGBTQ representation on biotech company boards, in C-suites and in functional leadership positions.

 

More News:

Biopharma Dive: With new proposal, Trump administration tries to encourage 'value-based' drug deals
“The proposed changes, laid out in a proposed rule issued by the Centers for Medicare and Medicaid Services, would lower some of the regulatory requirements that drugmakers have complained limit their ability to enter into outcomes-based agreements.” 

The New York Times: Climate change tied to pregnancy risks, affecting black mothers most
“Pregnant women exposed to high temperatures or air pollution are more likely to have children who are premature, underweight or stillborn, and African-American mothers and babies are harmed at a much higher rate than the population at large, according to sweeping new research examining more than 32 million births in the United States.” 

 
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President Trump’s Friday: Not much on the agenda today; heading to Tulsa, Oklahoma, tomorrow for a rally.

What’s Happening on Capitol Hill: The House Science, Space, and Technology Subcommittee on Investigations and Oversight is holding a virtual hearing today on repurposing therapeutics for COVID-19; watch online here.

 
 
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