Ashley is so much healthier than she was just two years ago! She's a mom to our wonderful grandson, Leo, and she's expecting a second baby in August! Ashley is now able to spend time with family and friends, pursue educational/professional opportunities, and to plan for the future in ways that were unthinkable for her not long ago.
Ashley continues to take Trikafta® the world's first triple-combination CF therapy, with around 90% of the CF population. Following its launch, has been reported that Trikafta® reduces the use of antibiotics, mucous thinners and anti-inflammatory drugs due to overall improvements to patient lung health. As a result, children with CF born today have a more optimistic prognosis than those, like Ashley, born around 30 years ago.
According to the Cystic Fibrosis Foundation (CFF), most CF patients reach adulthood with currently available treatments. The median survival is more than 50 years of age, however this isn't enough! When treatments are priced too high, they contribute to higher insurance premiums, copayments and restrictions on access. Studies have shown that as insurance costs increase, patients may delay care, forego care entirely, or even drop their health insurance. This leads to increased suffering and mortality. We have read stories of CF patients in these exact circumstances. We also hope and pray these efforts will help the US achieve a fairer price for these innovative CF therapies, without putting access to CF families at risk.
It is also critical to continue to develop new and improved treatments for complications from the disease. The CFF is building on the current momentum, funding an innovative research portfolio and collaborating with top scientists from around the world to deliver the next generation of transformative breakthroughs in CF. The CF Foundation spent a total of $218 million dollars on research and development in 2020.
There is still NO CURE for Cystic Fibrosis and 10% of the CF population cannot takeTrikafta®. We want everyone affected by CF to live long and healthy lives. That is why we will not stop raising funds for the Cystic Fibrosis Foundation.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.