Addressing Racism and Discrimination

President and CEO Michael Boyle shares an update on the Foundation's pledge to listen, learn, and take action against racism and discrimination.

| 3 min read
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Michael Boyle, M.D.
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One month ago, the CF Foundation pledged to listen, learn, and take action against racism and discrimination.

In the weeks since, we have spent time learning more about the experiences of Black colleagues in our organization and within the broader health care systems in which we operate. At the same time we have been reflecting on steps we can take that will make a meaningful difference and contribute to positive, lasting change.

We have also looked at the data. The CF patient registry tells us that approximately five percent of people with CF identify as Black. We know that non-white people with CF are more likely to have rare mutations that cannot be treated with current modulators, a key indicator that they are at risk of worse health outcomes. One particularly timely fact is, similar to those without CF, early data suggest that COVID-19 disproportionately affects CF patients of color, making up 20 percent of known cases among people with CF.

Addressing racism and health inequities is important and must be woven into the fabric of who we are and how we progress our mission. Along with the steps we are taking internally at the CF Foundation, we are focusing on the following three areas where we believe can make a difference within the community we serve.

  • Listening and education - Understanding the experiences of Black and other people of color with CF and increasing diverse voices informing our strategy and programs.
  • Recruitment, retention, and career advancement - Supporting the professional advancement of Black researchers and healthcare providers.
  • Health equity - Improving health outcomes for Black and other people of color with CF as part of our mission to ensure all people with CF live long, fulfilling lives.

As we continue to develop our plan and turn these ideas into action, we want to hear from the CF community. More information about how to get involved will be available in the coming weeks, and we encourage you to continue sharing your ideas and experiences with us by contacting info@cff.org. We will provide updates as we begin to make progress and will continue to acknowledge where we can do better.

The issues we are seeking to address will not be solved overnight. However, our work with the CF community has taught us the power of collaboration, determination, and perseverance to bring about change.  We will take inspiration from these lessons as we work together to navigate the road ahead.

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About the CF Foundation
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Michael Boyle, M.D. is President and Chief Executive Officer. Prior to his appointment as President and CEO, Dr. Boyle served as Senior Vice President, Therapeutics Development at the Cystic Fibrosis Foundation from 2015-2019. In that role, Dr. Boyle shaped the Foundation's clinical research strategy, overseeing the clinical development programs of new treatments for the CF Foundation, as well as the Foundation's Therapeutic Development Network of 92 academic research centers.

Dr. Boyle is internationally known for his clinical research and for his work to improve care for adults with CF. He served as both as an investigator in the clinical study of Kalydeco and principal investigator of the pivotal trial that led to approval of the first combination treatment, Orkambi. Dr. Boyle completed his medical training at Johns Hopkins, including a fellowship in pulmonary and critical care medicine, before joining the medical faculty in 1999. Dr. Boyle founded the Johns Hopkins Adult CF Program -- one of the largest in the United States -- in 1999 and served as director of that center for close to two decades. Today, he is an adjunct professor of medicine at Johns Hopkins, where he continues to see patients. In addition to his medical background, Dr. Boyle has completed training in non-profit management at both Johns Hopkins and Harvard.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.