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You Spoke and Congress Listened -- Now They Are Taking Action with a 2021 Spending Bill!

Remember back in March we opted to visit the Hill virtually so we could protect our lupus community from exposure to COVID-19? Instead of knocking on doors, we made endless phone calls and sent hundreds of emails. Now Congress is acting on our requests as members are coming close to passing the Fiscal Year 2021 Budget. To ensure the greatest allocation of funds and attention to lupus research, we asked Congress to:

  • Allocate $10 Million in Funding to Continue Building the Lupus Research Program at the Department of Defense
    Given the need for more lupus research plus the rising numbers of women treated at military health facilities, we requested that Congress maintain its investment and provide $10 million for the Lupus Research Program operated under the Defense Health Program.
  • Increase Funding for the National Institutes of Health (NIH)
    To provide at least $44.7 billion to the NIH in Fiscal Year 2021 to fund the research needed to fight lupus and other diseases, and to catch up on years of lowered funding to the NIH.
  • Increase Funding for the Food and Drug Administration (FDA) by $120 M
    FDA helps the pharmaceutical industry innovate and develop new treatments — and hopefully one day a cure — for diseases like lupus. That is why we requested that Congress provide a $120 million increase in FDA’s budget authority.

Below is a summary of how the 2021 federal budget has been moving over the past several months through the process toward becoming law:

Status Update as of December 28, 2020

President Trump signed the 2021 omnibus spending deal into law. It provides $10 million for the Lupus Research Program at the U.S. Department of Defense – exactly what LRA advocates requested at our virtual Hill day in March. The same federal spending bill also provides a significant boost to the National Institutes of Health, bringing that total budget to $42.9 billion for biomedical research which is an increase of $1.25B over last year’s budget.

In addition, the U.S. FDA received a total of $3.2 billion in discretionary funding, which is $43m above last year’s enacted level.

This bill reflects the understanding Congress has for the importance of medical research and for lupus research in particular. This appreciation is largely due to all of you — year after year bringing the need to life with your stories of how lupus impacts your life. And in 2020, you did not let COVID-19 silence your voice, instead sounding it loud and clear through phone calls and emails.  Thank you to all who shared your experience with your legislators!  YOU DID IT!

Status Update as of December 22, 2020

Both chambers of Congress – the House and the Senate – passed the 2021 omnibus spending deal late last night. It now awaits President Trump’s signature to enact into law.

Status Update as of December 21, 2020
After much back and forth, Congress has come to an agreement on the year-end spending deal.  With all the discussion, the need to fund research for lupus and other medical conditions has remained clear.

Status Update as of November 11, 2020
DoD Lupus Research Program
By tradition, the House version of the Defense Appropriations report carries prescriptive amounts to be spent on peer-reviewed medical research, and met LRA’s request of $10 million this year.  The Senate report contains an overall funding level of $370 million for peer-reviewed medical research programs, but does not specify individual amounts for specific programs.  When the House and Senate conference, the bills and reports are reconciled to be consistent and uniform. Usually, the Senate accepts the House-proposed levels for the Peer Reviewed Medical Research Program (PRMRP), which would mean the $10 million for lupus will likely stand if the bills are passed.

The Senate bill contains a provision noting the growth of the Congressionally Directed Medical Research Program (CDMRP) and directing the Comptroller General to conduct a review to ensure research is coordinated with NIH, to avoid duplication. It also notes that the Department of Defense is capable of executing the higher funding levels.  While this does not appear to be cause for immediate concern, it indicates policymakers’ interest in ensuring the program’s growth is justified and appropriate.

National Institutes of Health
LRA requested a $3 billion increase for NIH for a total of $44.7 billion.  The Senate version of the Labor, HHS, Education Appropriations bill would provide $43.68 billion, a $2 billion increase.  This is less than the $5.5 billion increase ($47 billion total) in the House bill.

U.S. Food and Drug Administration
LRA requested a $120 million increase for FDA.  The Senate version of the Agriculture Appropriations Act would increase FDA funding by $40 million, roughly equivalent to the House bill’s $41 million increase.


Status as of November 11, 2020
The House and Senate Appropriations Committees have begun the process of conferencing their bills and hope to reach an agreement to enact all 12 annual Appropriations bills by December 11th.  There are significant political hurdles to reaching such an agreement, but we will do everything we can to make sure lupus priorities are addressed. We will keep you posted as this process continues to unfold.


Status Update as of October 1, 2020
As of October 1, 2020 — the beginning of the new fiscal year — the Federal Government is operating under a Continuing Resolution (CR) through December 11. The CR allows the government to keep functioning without an approved new budget in the next fiscal year. This means that all the spending bills must be approved by December 11.

As noted below, over the past year, the House of Representatives has passed several spending bills that include the monies we requested to support the Lupus Research Program operated under the Department of Defense and increase the research budget for the National Institutes of Health.  We are now waiting for the Senate to approve similar allocations.

Status Update as of July 13, 2020
Last year, due to your advocacy efforts, we successfully doubled funding for the Lupus Research Program operated under the Department of Defense from $5 million to $10 million. This year, with tighter caps on spending and greater demands across the federal budget, our goal has been to protect this increased funding. Today, we took our first step on that long journey.

We are pleased to report that the Fiscal Year 2021 House Defense Appropriations report was made public, and it includes LRA’s request to preserve $10 million in funding for the Lupus Research Program.

  • Increase Funding for the National Institutes of Health (NIH)
    To provide at least $44.7 billion to the NIH in Fiscal Year 2021 to fund the research needed to fight lupus and other diseases, and to catch up on years of lowered funding to the NIH.


Status Update as of July 13, 2020
The House Appropriations Subcommittee bill provides a total of $47 billion – even more than we requested — for the National Institutes of Health, an increase of $5.5 billion above what was passed in Fiscal Year 2020. The bill provides $42 billion in annual appropriations, an increase of $500 million above the 2020 enacted level and $8.6 billion above the President’s budget request, as well as $5 billion in emergency appropriations. 

The bill increases funding for each Institute and Center within the National Institutes of Health by no less than 7 percent to support a wide range of critical research on diseases and conditions that affect individuals and families all over the world.

  • Increase Funding for the Food and Drug Administration (FDA) by $120 M
    FDA helps the pharmaceutical industry innovate and develop new treatments — and hopefully one day a cure — for diseases like lupus. That is why we requested that Congress provide a $120 million increase in FDA’s budget authority.


Status Update as of July 13, 2020

TBD

There are many steps to go before the 2021 budget is signed into law. Check back regularly to watch the progress of this important bill that will help make possible the scientific work needed to deliver new treatments and a cure for lupus.

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