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Guest Post: Partnering to Educate the African American Community About hATTR Amyloidosis
December 4, 2019
Roslyn Y. Daniels
President & Founder, Black Health Matters
One of our areas of focus at Black Health Matters is education about the importance of knowing one’s family health history. Knowing health history is critical, because armed with that knowledge, people can proactively take actions to better their own health. Unfortunately, awareness of family health histories in the African American community lags behind that of other groups, and there is much work to be done to improve.
We have found in Alnylam a partner who shares our belief in the importance of education to improve health disparities. We’re excited to be expanding our partnership together to educate at-risk communities about hereditary ATTR (hATTR) amyloidosis – a rare, inherited, progressively debilitating, and often fatal disease that disproportionally impacts African Americans. Our primary means of education will be through a series of local events hosted across the United States.
These events are critical because the health disparities that persist for our community are due in part to the general lack of awareness and information available for rare diseases. Our continued partnership with Alnylam affords us the ability to provide resources and information to people who would likely otherwise not learn about hATTR amyloidosis, which we hope will have a profound impact on families that are facing, or may someday face, this potentially devastating disease.
We have found in Alnylam a partner who shares our belief in the importance of education to improve health disparities. We’re excited to be expanding our partnership together to educate at-risk communities about hereditary ATTR (hATTR) amyloidosis – a rare, inherited, progressively debilitating, and often fatal disease that disproportionally impacts African Americans.
It’s estimated that there are more than 7,000 rare diseases, so why focus on hATTR amyloidosis? Approximately four percent of African Americans carry a specific TTR gene mutation called Val122Ile,1 which puts them at increased risk for developing the disease.2 Since there are more than 40 million African Americans in this country, the number of people who may have the Val122Ile gene mutation is significant.3 As we enter this next phase of our partnership together with Alnylam, we are dedicated to educating even more families about their risk for the disease so they can take the necessary steps with their loved ones and healthcare teams in a timely manner.
Roslyn Daniels (second from left) is the President and Founder of Black Health MattersOur expanded partnership builds on efforts of Black Health Matters and Alnylam to increase education about hATTR amyloidosis throughout 2019. In February, to commemorate Black History Month and Rare Disease Day, we created a series of educational articles about rare diseases, including hATTR amyloidosis, and their impact on African Americans. More recently, we launched the “Know Your Genetic Health History” event series. The first events were held in September, October and November in New Orleans, Chicago and Philadelphia featuring physicians from the local academic centers and patients diagnosed with hATTR amyloidosis. Additional events are planned throughout the country in 2020.
Further highlights from our ongoing collaboration include:
- The 3rd Black Health Matters Summit: Dr. Mathew Maurer, a specialist in hATTR amyloidosis at Columbia University, was featured in a special session to share his expertise and experience
- Celebrating Grandparents: A multi-platform initiative celebrating grandparents and the importance of knowing one’s family health history kicked off in September, timed to National Grandparents Day on September 8
- The Tom Joyner Morning Show: Dr. Ella Horton, a Medical Science Liaison at Alnylam, and Nicolette Woods, MBA, BSN, RN, a Patient Education Liaison at Alnylam, participated in interviews with the Tom Joyner Show to discuss symptoms of hATTR amyloidosis and to drive home the importance of understanding one’s family health history and tools like genetic testing
I’ve been thrilled about how our efforts with Alnylam thus far have been received by the people we seek to educate. I look forward to this next chapter of our partnership, excited about the people we will reach and number of lives our efforts have the potential to help as a result.
Roslyn Daniels is the President and Founder of Black Health Matters and also serves as CEO of The Daniels Network, the holding company for Black Health Matters Multi-Channel Communications, LLC which was founded in 2003.
1 National Institutes of Health: Department of Health and Human Services. Genetics Home Reference. Transthyretin amyloidosis. https://ghr.nlm.nih.gov/condition/transthyretin-amyloidosis#frequency. Accessed January 24, 2018.
2 Swiecicki P, Zhen D, Mauermann M, et al, Amyloid 2015;22(2):123-131.
3 Bialik, Kristen. “5 Facts about Blacks in the U.S.” Pew Research Center, 22 Feb. 2018, https://www.pewresearch.org/fact-tank/2018/02/22/5-facts-about-blacks-in-the-u-s/.
