Supporting The Goals And Ideals Of National Cystic Fibrosis Awareness Month
Mr. Speaker, I stand before my colleagues on the House floor today to lend my strong support to this House Concurrent Resolution 299, Supporting the Goals and Ideals of National Cystic Fibrosis Awareness Month. I am also honored to cochair…
Mr. Speaker, I stand before my colleagues on the House floor today to lend my strong support to this House Concurrent Resolution 299, Supporting the Goals and Ideals of National Cystic Fibrosis Awareness Month.
I am also honored to cochair this with my distinguished colleague from Massachusetts, Mr. Ed Markey, and I look forward to passage of this resolution. He and I have worked on this together. We are very pleased that, finally, it's coming to the floor, and hopefully will pass today.
My colleagues, this is a disease that affects 30,000 Americans living in this country, more than half of which are children. One out of every 3,500 babies born in the U.S. today has cystic fibrosis, with 70 percent of the cases diagnosed by age 2 and 1,000 new cases diagnosed each year.
In my home State of Florida, there are roughly 1,100 patients who suffer each and every day from this debilitating disease. It's cruel. That is 1,100 too many. These CF patients have to endure hours of treatment each day just to stay relatively healthy and maintain normal lung functions. Treatments range from daily air clearance techniques to intensive nutrition and drug therapies, and even to lung transplants in the most severe cases.
People suffering from CF have two copies of a defective gene, which causes the body to produce abnormally thick sticky mucus which clogs the lungs
and can result in fatal lung infections. This kind of mucus can also obstruct the pancreas, making it difficult for people with CF to absorb nutrients, simple nutrients, in food. Unfortunately, more than 10 million Americans are unknowingly symptom-free carriers of the CF gene.
Now, the residents of Florida have recognized there is a real need for CF care and research. There are 15 specialized centers and clinics for cystic fibrosis care in my home State of Florida, including one at the University of Florida, which I represent here in Congress.
My colleagues, there is no cure for CF, even though it is one of the most common, life-threatening diseases in the United States. Now, 50 years ago, CF was considered a death sentence, as there were no drugs to combat and control the symptoms.
In 1955, a child born with CF was not expected to live long enough to attend elementary school. Today, the median age of survival for a CF patient is 37.
I am proud to say there are five drugs on the market, and there's over 30 new drugs that are in various stages of development. These drugs are helping children born with CF to live significantly longer and healthier lives. People with CF are living longer. Over 40 percent of the CF population is now age 18 or older.
But that is not enough, my colleagues. We need more research and more funding, and we can't stop until we find the cure. I believe in the ingenuity and strong ethic of the American people. I believe we have the brain power and the drive to cure this disease today.
I would like to recognize the Cystic Fibrosis Foundation, which has led the development of these promising treatments through an innovative business approach to drug discovery and development. The Cystic Fibrosis Foundation has entered into partnerships with biotechnology and pharmaceutical companies in an effort to find a cure, a simple cure for this disease.
As a result of their efforts, promising potential drug therapies to correct the cause of the disease are now entering clinical trials in CF patients, and new therapies that treat the symptoms of this disease are now helping patients every day as we speak.
In the past 5 years, the Cystic Fibrosis Foundation and its subsidiaries have invested over $650 million in drug research. I commend them for their commitment to innovation and for acting as a facilitator in the development of these important new drugs.
With the support of the foundation, programs like the one at the University of Florida CF and Pediatric Pulmonary Disease Center are simply improving the health outcome of patients who have cystic fibrosis. In the past 5 years in the State of Florida, CF research and care supported by the CF Foundation has totaled $3\1/2\ million.
I urge my colleagues to recognize the achievements of organizations like the Cystic Fibrosis Foundation, and to bring awareness to and honor to the thousands of Americans suffering from CF every day, by simply passing this resolution.