CF Foundation Joins CEO Action for Diversity and Inclusion

CFF now part of 2,300-strong workplace pledge to equality and dignity for all

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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CEO Action for Diversity and Inclusion | Cystic Fibrosis News Today | CFF joins pledge | illustration of disease ribbons

The Cystic Fibrosis Foundation (CFF) has joined the CEO Action for Diversity and Inclusion, adding its name to the more than 2,300 corporate leaders, representing 85 industries, who have pledged to bring greater inclusion and diversity into their workplaces.

Organizations with diverse teams perform better, the CFF stated in a press release announcing its recent action, and it is committed to cultivating a workplace where individuals of different backgrounds, identities, and life experiences are respected and can succeed, and open discussion flourishes.

The CFF, which advocates for and supports people living with cystic fibrosis (CF), also has established “diversity, equity, and inclusion,” often referred to as DEI, as its core guiding principles.

“Our commitment to embedding racial justice and DEI principles in all we do is critical to achieving our mission of serving all people with CF and to building and maintaining a strong and inclusive culture and community” said Michael Boyle, MD, president and CEO of the CFF.

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CEO Action pledge supports DEI principles

CEO Action is reported to be the largest CEO-driven business commitment to diversity and inclusion. Its signatories, as company leaders, pledge to implement policies that:

  1. Make workplaces trusting places to address questions on diversity and inclusion, by creating platforms and forums where colleagues can interact to gain awareness of each other’s perspectives and experiences, encouraging dialogue, and not tolerating behaviors that deflect from an open-mindedness environment;
  2. Implement education for unconscious bias, by implementing unconscious bias education modules to enable individuals to recognize and minimize blind spots he/she was not aware of previously;
  3. Share and develop best practices, by helping companies develop their diversity strategies, based on successfully established initiatives around diversity and inclusion by other companies, and sharing their example and challenges with others;
  4. Create and share inclusion and diversity plans with directors and other board leaders, by developing and evaluating concrete action plans to hold accountability and prioritize diversity and inclusion.

Under its DEI program, the CFF has also provided comments to the U.S. Food and Drug Administration (FDA) to assist its efforts for greater racial and ethnic diversity in clinical trials, helping to ensure that clinical research is representative of entire cystic fibrosis and other patient communities. Included in those comments were a number of suggested changes in trial procedures and FDA approaches.

The CFF also published its Communities of Color report, detailing earlier work to better understand, through interviews and a survey, barriers to engagement by people of color with CF. This background work uncovered three major themes — representation, education, and resources — that were then further explored in focus groups to identify the needs and perspectives of Blacks, Hispanics, and other racial and ethnic groups within the CF community, whether patients, family members, or caregivers.

Participants reported a need to increase their representation, mentioning points like better inclusion in newborn screening programs, greater equity, and more opportunities to participate visually across CFF platforms and be heard within the community.

Many also reported a lack of access to available resources, including awareness of research and care updates, and opportunities to engage with the CFF. They felt that, with CF too often still considered a “Caucasian disease,” a need to educate others — including healthcare workers — on how to take seriously and to treat CF in people of color. A result was often a loss of confidence in the CF care system and hesitancy to engage at all levels.

“As we continue to conduct listening efforts within these communities it is important to incorporate what we are hearing into this work moving forward,” the CFF wrote in its report.

As part of its participation in CEO Action, the CF Foundation has formed a Racial Justice Equity and Inclusion Advisory Council to establish and review recommendations, best practices, and actions in support of foundation efforts to create an inclusive and discrimination-free environment.

It also convened a racial justice working group, composed of CFF staff and external advisors and stakeholders, to better address health disparities, improve health outcomes, and identify opportunities for all in the CF community.