EndoFound in Action

Endofound Org,
Posted on May 5, 2022

UpEndo Coalition Fiscal Year 2023 Appropriations Updates

The Fiscal Year 2023 appropriations process for the federal government is fully underway. EndoFound and its UpEndo Coalition have been working to ensure that endometriosis research and grants remain a priority for key federal agencies. These agencies include the NIH’s National Institute of Child and Human Development (NICHD), the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP), and a new focus on the Department of Veterans Affairs Women Veterans Research Program.

Congressional Endometriosis Caucus Supports FY23 Endometriosis Research Appropriations Requests

In late April 2022, the bipartisan Congressional Endometriosis Caucus, with the support from EndoFound’s UpEndo Coalition, wrote a letter to the House Appropriations Committee to support the Fiscal Year 2023 appropriations requests to invest in endometriosis research. The caucus asked for the following appropriations requests:

Labor, Health, and Human Services, and Education, and Related Agencies Appropriations Act

Include report language directing the National Institute for Child and Human Development at the NIH to allocate at least $30 million to continue to expand basic, clinical, and translational research into the mechanics of endometriosis, identify early diagnostic markets, and develop new treatment methods.

Department of Defense Appropriations Act

Include report language directing that endometriosis remains an eligible condition for research under the peer-reviewed medical research program (PRMRP).

Military Construction, Veterans’ Affairs, and Related Agencies Appropriations Act

Include report language directing that endometriosis research be part of the VHA’s medical and prosthetic research program (medical research).

Massachusetts Senator Elizabeth Warren and Utah Senator Mitt Romney shared their support for prioritizing endometriosis research in a letter they wrote to the Senate Appropriations Committee. Their letter described the importance of including funding for endometriosis research in the Labor, Health and Human Services, Education and Related Agencies Appropriations Act and the Department of Defense Appropriations Act:

Labor, Health and Human Services, Education and Related Agencies Appropriations Act

Ensuring increased funding for endometriosis bolsters research efforts that improve health outcomes for millions of patients. Endometriosis research also provides further insight into many other diseases. For example, according to researchers at the National Institutes of Health, women with endometriosis are more likely to have chronic fatigue syndrome, fibromyalgia syndrome, asthma, allergies, and eczema.⁶ Endometriosis is also associated with an increased risk of developing certain types of ovarian cancer,⁷ and limited research on the topic indicates that endometriosis may also be connected to breast cancer.⁸

Last year, Congress showed strong bipartisan support for endometriosis research. We, therefore, ask that you continue to support robust funding and include the following report language: The Committee directs the National Institute for Child and Human Development to allocate at least $26 million to continue to expand basic, clinical, and translational research into the mechanics of endometriosis, identify early diagnostic markets, and develop new treatment methods.

Department of Defense Appropriations Act

The most recent research assessing endometriosis in the U.S. Army was published over 30 years ago. In 1988, researchers reviewed the records of 6,456 women in the U.S. Army. They found the prevalence of endometriosis amongst female servicemembers to be 6.2%, with an estimated lost duty time related to endometriosis of 21,746 days over five years.⁹ The costs of endometriosis to female service members, veterans, and family members have certainly grown over the years as the number of women serving in our armed forces has increased.

FY 2018 was the first year endometriosis was eligible for funding under the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). The FY18 funding has enabled grant awards for key areas of endometriosis research. These critical areas include genomics, identification of biomarkers to help develop a non-invasive diagnostic tool, the transformation of endometriosis into cancer, non-hormonal medical therapy, and the effects of chronic pain for women.¹⁰

However, the condition was not made eligible for funding in FY 2019 despite the pressing research opportunities in this area. While we are encouraged that endometriosis was added back to the list for Fiscal Years 2020 and 2021, we must ensure that this condition remains eligible for years to come. We, therefore, ask that you include the following report language: The Committee directs that funds provided in the Peer-Reviewed Medical Research Program (PRMRP) are used to conduct research in endometriosis.

EndoFound Submits Testimony to House Appropriations LHSS Subcommittee

The Endometriosis Foundation of America submitted testimony to the House Appropriations LHHS Subcommittee, urging support for important Report Language and funding of $30 million in the FY23 LHHS Appropriations Bills for endometriosis research and awareness for the National Institutes of Health’s (NIH) National Institute of Child Health and Human Development (NICHD).

The testimony emphasizes the importance of increased funding for endometriosis research to develop a better understanding and treatments for endometriosis, leading to better health outcomes for millions of patients who suffer from this painful and debilitating disease.

House Appropriations Committee to Completes Bill Markups

On June 30, 2022, the House Appropriations Committee approved the Labor, Health and Human Service (LHHS) Appropriations bill and, on June 23, 2022, approved the Military Construction-Veterans Affairs (MilCon-VA) Appropriations bill.

In the LHHS Appropriations bill, the committee explicitly recognizes the need for increased research on endometriosis under the National Institute of Child Health and Human Development (NICHD), stating: “Endometriosis Research. The Committee urges NICHD to continue to expand basic, clinical, and translational research into the mechanics of endometriosis, identify early diagnostic markers, and develop new treatment methods.”

In the MilCon-VA Appropriations bill, the committee also recognized the need for the VA to pay special attention to Women Veterans Research, stating: “The Committee also directs VA to ensure that conditions with widespread impact on women, such as endometriosis, are included in VA’s research efforts to better understand the impact of military service on veterans with these conditions.”

The full House of Representatives is expected to pass all of their FY23 Appropriations bills by the end of July.

Senate Appropriations Committee FY23 Appropriations Consideration Timeline

The Senate will begin to consider their appropriations bills in mid-July with the intention to release at least draft bills and report language before the August Congressional Recess period.

Last year, the committee did not mark up their bills but released a draft text that reflected only the Democrats spending priorities, which were used as a starting point for negotiations with the House on the final numbers.