PROCLAIMING THE MONTH OF MAY 2025 "CYSTIC FIBROSIS AWARENESS MONTH" IN THE STATE OF DELAWARE.

Legislation Document

SPONSOR:

Sen. Hocker & Rep. Jones Giltner

Sens. Buckson, Hoffner, Huxtable, Lawson, Mantzavinos, Pettyjohn, Richardson, Sokola, Wilson; Reps. Dukes, Morrison, Ross Levin, Yearick

DELAWARE STATE SENATE

153rd GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 78

PROCLAIMING THE MONTH OF MAY 2025 "CYSTIC FIBROSIS AWARENESS MONTH" IN THE STATE OF DELAWARE.

WHEREAS, cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 40,000 children and adults in the United States and over 70,000 worldwide; and

WHEREAS, an estimated 105,000 people are diagnosed with cystic fibrosis across 94 countries; and

WHEREAS, more than 75% of patients are diagnosed by age two; and

WHEREAS, in the 1950s, few children with cystic fibrosis lived to attend elementary school; and

WHEREAS, today, because of improved medical treatments and care, more than half of people with cystic fibrosis are 18 years and older, and many people can expect to live healthy, fulfilling lives into their 30s, 40s, and beyond; and

WHEREAS, based on the 2023 CF Foundation Patient Registry data, the life expectancy of people with CF who are born between 2019 and 2023 is predicted to be 61 years; and

WHEREAS, advancements in research and medical treatments have further enhanced and extended the lives of children and adults with cystic fibrosis; and

WHEREAS, through the drug development pipeline of the Cystic Fibrosis Foundation, significant progress has been achieved in the search for new treatments and a cure for this disease is being developed; and

WHEREAS, in 2018, the FDA approved the use of lumacaftor/ivacaftor for children with cystic fibrosis ages 12 to 24 months, which allowed about 1,300 additional children in the U.S. to be eligible to receive the drug, bringing the total number of those in the U.S. who could benefit from the treatment to approximately 12,300; and

WHEREAS, the FDA approved Trikafta, the first triple combination therapy available to treat patients with the 19 most common cystic fibrosis mutation in 2019; and

WHEREAS, the theme of this year’s cystic fibrosis awareness is “Defining the Future Together” to promote public awareness and understanding of cystic fibrosis and to bring more support for critical research to achieve the goals of enhancing research programs and finding a cure.

NOW, THEREFORE:

BE IT RESOLVED by the Senate of the 153rd General Assembly of the State of Delaware, the House of Representatives concurring therein, that May 2025 is hereby proclaimed “Cystic Fibrosis Awareness Month” in the State of Delaware.

BE IT FURTHER RESOLVED that a suitably prepared copy of this resolution be presented to the Cystic Fibrosis Foundation.

SYNOPSIS

This Senate Concurrent Resolution proclaims the month of May 2025 "Cystic Fibrosis Awareness Month" in the State of Delaware.

Author: Senator Hocker