A Message for Speaker Boehner from the CFF

As Congress develops a plan for addressing our budget deficit in the coming weeks, please protect funding for biomedical research and drug development efforts at the National Institutes of Health and the Food and Drug Administration in any agreement that is reached

The NIH and FDA are critical to developing treatments, and eventually a cure, for CF. These cuts will damage many programs that improve the lives of people with cystic fibrosis, from studies that help improve nutrition for babies with CF to the review process that ensures new drugs are safe and effective.

The NIH and FDA drive innovation and America’s economy.

o   An 8 percent across the board funding cut would reduce funding for biomedical research at NIH, leading to 33,000 fewer jobs across the U.S. and a corresponding $4.5 billion decrease in economic activity.
o   The FDA is responsible for oversight of about $2 trillion in goods and services and nearly one-fourth of all consumer spending in the United States, and drastic budget cuts will slow drug and device approvals 

Once again, please support our investment in life-saving research and drug development and protect NIH and FDA funding in negotiations over deficit reduction measures.

Research and Drug Development that Could be Impacted by Budget Cuts

National Institutes of Health

BONUS

The multi-site Baby Observational and Nutrition Study is a partnership between CFF and the NIH and is being conducted at 15 sites including Cincinnati Children’s Hospital Medical Center and Nationwide Children’s Hospital in Columbus. Newborns with CF often have trouble absorbing nutrients, may suffer from malnutrition, and thus might not grow the way they should. This study aims to better measure growth in infants with CF, better understand factors that contribute to poor growth, and to study the effect of a particular therapy on nutrient absorption in infants with CF.  A reduction in NIH funding has the potential to slow or halt this research, which could serve as the basis for treatments that improve the health and quality of life for kids with the disease.

PUSH

The Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis (PUSH) study, in the NIDDK’s Childhood Liver Disease Research and Education Network (ChiLDREN), looks at the risk of hepatic cirrhosis in those with CF between the ages of 3 and 12. Hepatic cirrhosis, or severe scarring of the liver, is a serious problem for those with cystic fibrosis. This study is conducted at 11 sites, including at Cincinnati Children’s Hospital Medical Center, and a reduction NIH funding could have a detrimental effect on this research.

GENETIC RESEARCH AT JOHNS HOPKINS

NPR’s Morning Edition reported on sequestration’s potential impact on genetic research into cystic fibrosis – you can find the link to the story here.

Food and Drug Administration

Groundbreaking new cystic fibrosis treatments are making their way through the CF pipeline, and we’re concerned that sequestration will lead to layoffs at FDA and a reduction in the resources it needs to move drugs through the process efficiently. As you know, Kalydeco – the first drug to address the underlying cause of cystic fibrosis – was approved by the FDA in only three months, one of the fastest approvals in the agency’s history. Budget cuts could slow this process and hinder efforts to quickly move treatments to patients.