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March 2022 Advocacy Update

Mar 22, 2022

Rare Disease Day has been brought to the public’s attention since 2008, but even before this day came to be there have been so many initiatives that the HPS Network, and the Rare Disease Community have been advocating for, and standing behind!  One of the biggest asks that we’ve been voicing, is a Bill that focuses on Appropriations for the NIH and other Institutions that work with them, like the FDA, CDC, along with many others.

With continuously changing political needs, The Omnibus Appropriations for the FY 21, and FY 22 Bill has been one of the most important asks voiced by us and the Rare Disease Community! This Legislation is a documented budget that these institutions will have to keep research, safety, oversight, as well as the ability to approve various therapies and vaccines for our nation and the world going.

Just this last week various news sources that work with the research community have been reporting that our Seventh Wonder of the World (these bills) are in high gear as both the House and the Senate are making strides to move this ask forward!

As sources that support Researchers write:

“Research!America applauds Congress for developing the bipartisan Consolidated Appropriations Act, 2022. Among many critically important provisions, the Omnibus appropriations legislation provides much needed FY22 funding increases for NIH, CDC, FDA, AHRQ, BARDA, and NSF, funds a breakthrough innovation incubator.”

As reported, some of the outcomes that are expected to come with the previous FY 21, and into the FY 22 year are:   

National Institutes of Health- NIH

“By providing an increase of $2.25 billion to the core budget of the NIH (5.3% over FY21), this agreement reaffirms strong bipartisan support in Congress for empowering life-saving research in every state across our nation.”  

“The American public agrees: A January 2022 survey commissioned by Research!America found that more than 8 in 10 Americans (83%) across party lines agreed the federal government should fund basic scientific research that advances the frontiers of knowledge.”

Food and Drug Administration- FDA

“Research!America is gratified to see a $102 million increase (3.2% over FY21) for FDA. “  

“The ever-increasing list of public health responsibilities FDA fulfills directly affects the health and safety of Americans.”

“On a bipartisan basis, members of Congress responded to the need for more funding, and we look forward to working with the Administration and Congress to assure robust resources for this agency going forward.”  

Centers for Disease Control and Prevention- CDC  

The bill provides an increase of $582 million for the CDC (7.4% over FY21). The CDC is our nation’s front line — not only against pandemics, but against the opioid crisis, antibiotic-resistant “superbugs,” disparities in health and health care, and everyday threats to communities nationwide.”  

“The funding increase is a down payment that will begin the revitalization of an agency that has faced years of inadequate funding, bolstering its capacity to address a range of public health threats and potential global crises.”    

Policy Makers that have been reported to support this Legislation:  

We are grateful to House Appropriations Committee and Labor-HHS Subcommittee Chair Rosa DeLauro (D-CT), House Appropriations Committee Ranking Member Kay Granger (R-TX), and Labor-HHS Subcommittee Ranking Member Tom Cole (R-OK); as well as Senate Appropriations Committee Chair Patrick Leahy (D-VT) and Ranking Member Richard Shelby (R-AL); and Senate Labor-HHS Appropriations Subcommittee Chair Patty Murray (D-WA) and Ranking Member Roy Blunt (R-MO) for their leadership in prioritizing vital medical research and public health investments at the Department of Health and Human Services.”  

The HPS Network, and all who are in the Rare Disease Community are so thankful for what the NIH and all the affiliating agencies do for us to strive for a cure, and a better quality of life for all in the future to come! We are very thankful for the outcome of this Legislation, and what it is providing!  Every couple of years these asks, and the whole outcome of this budget itself can keep changing– depending on political goals. We always need more voices to thank and advocate for all who assist us in attaining a better quality of life for all! It takes both resolve and numbers! Together with the strength that we all have as an HPS community, we can move mountains! This is such great news to find out, but we also need to continuously keep the momentum going! May we always keep being part of the solution and a clear voice within our political arena in whatever way we can!  

For more information about those mentioned in this source, or questions about Appropriations and Legislation that is happening, please contact ashley@hpsnetwork.org!