Here’s a recap of some highlights from the Boomer Esiason Foundation’s 2023 Year in Advocacy and other cystic fibrosis news.
In March, BEF signed on to a letter supporting the PASTEUR Act, a bipartisan, bicameral legislation that calls for the development of a sustainable antibiotic pipeline to meet the growing threat of antimicrobial resistance. The pipeline is based on a novel payment model that fosters innovation and creates financial incentives for new drug development. People living with CF are especially vulnerable to resistant infections and need access to new antibiotics now.
April was Donate Life Month, which raises awareness for organ donation and celebrates the lives saved by organ transplantation. One organ donor can save up to eight lives and there are over 100,000 people waiting for organ transplants.
For CF Awareness Month in May, BEF launched a robust CF education campaign to spread CF awareness.. Also in May, the FDA approved Kaydelco for infants as young as one month old, which is the first and only modulator approved for infants in that age group.
In June, BEF highlighted World Infertility Awareness Month with an education campaign about CF and infertility. Most men with CF are infertile and many women with CF struggle with issues that may impact their fertility. The Foundation has made it a key priority to educate community members about CF and infertility, as well as encouraging people living with CF to talk with their care teams to discuss family building options. While there is an alarming lack of accessible information for people with CF about family building, in recent years research, awareness, and educational resources have begun to appear more frequently. The campaign also called attention to the BEF IVF program, which supports people with CF to realize their dreams of starting a family.
BEF spoke out against the Colorado Prescription Drug Affordability Review Board’s decision to review the affordability of Trikafta in August, condemning the board’s decision to consider an upper price limit for the lifesaving drug. Such a price limit would jeopardize Coloradans’ access to Trikafta and disincentivize broader drug development. Later in the month, cystic fibrosis related infertility and BEF’s IVF program was featured on the Man Up podcast. The episode took a deep dive into the stigma and mental health aspects of infertility, as well as advice for people struggling with infertility.
This October, in a victory for patients everywhere, a federal court struck down a court ruling that allowed insurers to use copay accumulator adjusters for drugs that do not have a generic equivalent. This decision was a huge win for the CF community, as copay accumulators unfairly disadvantage people with CF who rely on copay assistance programs to afford their medications.
In November, BEF participated in the 2023 Milken Institute Future of Health Summit, and was featured in a panel on antibiotic development. The panel featured leaders in the nonprofit, research, and biopharma spaces who discussed the devastation that antimicrobial resistance poses to public health both now and in the future, as well as the importance of the PASTEUR Act in the current health policy landscape.
The year ended on a high note– on December 8, the Colorado Prescription Drug Affordability Review Board determined that Trikafta was “not unaffordable” for patients living in Colorado. This victory came after the passionate, steadfast advocacy of the CF community, who voiced their needs and showed the importance of patient centricity in healthcare decision-making.
As we look back on 2023, we’re so proud of all that we have accomplished as an organization and as a community. We are anticipating that 2024 will be an impactful year for advocacy and more as we look forward to making even more progress towards creating a better future for people living with CF.