There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the DOD’s Congressionally Mandated Medical Research Program (CDMRP). At the CDC, we have worked hard to maintain funding for Fragile X awareness and research. There is currently a $2 million/year line item for Fragile X. We also work with a coalition to support overall CDC funding.

Today the National Fragile X Foundation, along with 152 other groups, sent a letter to the chairs and ranking members of the House and Senate Appropriations Subcommittee on Labor-HHS-Related Agencies requesting a funding level of $8.445 billion.

The text of the letter is below and a PDF version here has all of the signatories.

April 9, 2018

Dear Chairmen Blunt and Cole and Ranking Members Murray and DeLauro:

The undersigned 153 members of the CDC Coalition and other supporting state and national organizations urge you to provide $8.445 billion for the Centers for Disease Control and Prevention’s programs in the FY 2019 Labor, Health and Human Services, Education and Related Agencies Appropriations bill. We believe that Congress should prioritize funding for all of the activities and programs supported by CDC which are essential to protect the health of the American people. We are grateful for the important increases provided for CDC programs in the FY 2018 omnibus bill and urge Congress to continue efforts to build upon these investments to strengthen all of CDC’s programs. We also continue to oppose any effort to repeal or cut the Prevention and Public Health Fund which currently makes up approximately 10 percent of CDC’s budget. Congress must ensure that the agency’s budget remains whole in the face of these misguided efforts that threaten funding for many CDC programs.

The CDC Coalition is a nonpartisan coalition of organizations committed to strengthening our nation’s public health infrastructure and prevention programs. Our mission is to ensure that health promotion and disease prevention are given top priority in federal funding, to support a funding level for CDC that enables it to carry out its prevention mission and to assure an adequate translation of new research into effective state and local programs. Coalition member groups represent millions of public health workers, researchers, clinicians, educators, and citizens served by CDC programs.

CDC serves as the command center for the nation’s public health defense system against emerging and reemerging infectious diseases. From aiding in the surveillance, detection and prevention of the Zika virus to playing a lead role in the control of Ebola in West Africa and detecting and responding to cases in the U.S., to pandemic flu preparedness, CDC is the nation’s – and the world’s – expert resource and response center, coordinating communications and action and serving as the laboratory reference center. States, communities and the international community rely on CDC for accurate information and direction in a crisis or outbreak.

CDC is faced with unprecedented challenges and responsibilities ranging from combating the opioid, tobacco and obesity epidemics to emergency preparedness and chronic disease prevention. CDC funds programs for injury control and violence prevention; global health security; health promotion in schools and workplaces; the prevention of diabetes, heart disease, stroke, cancer, lung disease and other chronic diseases; nutrition and physical activity; immunization; environmental health, including the prevention of childhood lead poisoning; oral health; reducing health disparities; preventing infant mortality and birth defects; preventing antimicrobial resistance; preventing prescription drug overdose, improving the health and quality of life of individuals with disabilities, vision and eye health and public health research and health statistics. It is notable that more than 70 percent of CDC’s budget supports public health and prevention activities by state and local health organizations and agencies, national public health partners and academic institutions.

In addition to ensuring a strong public health infrastructure and protecting Americans from public health threats and emergencies, CDC programs are crucial to reducing health care costs and improving health. Despite the progress CDC has made to meet these needs, the agency’s programs have been woefully underfunded. We urge you to support a funding level of $8.445 billion for CDC’s programs in FY 2019.