As the COVID-19 pandemic continues to spread, millions of Americans, including those living with cystic fibrosis, are facing a devastating decision: place their health or their loved one's health at risk by going to work, or possibly lose their income
altogether. Current family and medical leave policies do not go far enough to protect all Americans, especially those with underlying conditions. Eligibility for the paid family and medical leave program must be expanded to include individuals at
possible high risk for adverse complications from COVID-19 and working members of their households.
Why Expanding Paid Family and Medical Leave Matters
Because of the scientific progress seen in the CF community, more adults with CF are employed now than ever before. In fact, since 2003, the median age of a person diagnosed with cystic fibrosis has increased exponentially. By 2018, almost 40 percent
of adults living with CF were employed full time and more than 12 percent were employed part time.
"[Trikafta® has given me] a life I never thought I'd have,” said Katie Fielding, an adult with CF. “Being in the best health in my life and having to be concerned about how my disability affects my employment isn't something I should have to
be concerned with during a global pandemic."
Our Advocacy
The CF Foundation is leading the charge to expand paid family and medical leave to protect people
living with CF and other Americans who are most vulnerable to the adverse effects of COVID-19. To date, our advocacy includes:
-
A letter sent in partnership with 160-plus patient
and consumer organizations to congressional leaders asking them to expand paid family and medical leave
- Thousands of constituent messages to Congress and community organizing to spur action
- Our first-ever virtual congressional briefing to educate staff on Capitol Hill on the importance of expanded paid family and medical leave for vulnerable populations
- Stories of teen advocates shared through 60-plus creative videos during the Foundation’s 12th annual Teen Advocacy Day
Additionally, the Foundation has heard unique stories about the choices families have made during the pandemic and why expanding paid leave may have changed their situation.
“I don’t see myself having the ability to go back to work,” said Laurin Scarpelli, a mom of two children with CF in a recent Huffington Post article. “People say money can’t buy happiness, but it does buy safety, and we’re going to lose that.”
What’s Next?
We are asking the CF community to continue using their voices to remind Congress that any negotiated COVID-19 relief package MUST include expanded paid family and medical leave.
It is not an option; it is a necessity.