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Congressional Briefing: Supporting Women with Fibroids Through Policy Action

July 13 @ 10:00 am - 11:15 am EDT


The Society for Women’s Health Research (SWHR) hosted a virtual congressional briefing to raise awareness of policy needs to improve care for individuals with uterine fibroids, a condition that is underfunded and often overlooked in research.

Approximately 26 million Americans ages 15–50 have fibroids, making it one of the most common gynecological conditions nationwide and a growing and overlooked public health issue. One study found that more than 80% of Black women and nearly 70% of white women have fibroids by age 50. Black women are at higher risk for the disease, tend to develop fibroids earlier in life and have larger tumors, and are three times more likely to be hospitalized for the condition than white women.

Stigma around menstrual issues has contributed to a lack of public awareness about fibroids and insufficient research and development of novel treatments. Fibroids account for an estimated $5.9 billion to $34.4 billion in annual costs to the U.S. health care system, but fibroids research received only $17 million in National Institutes of Health (NIH) funding in 2019, putting it in the bottom 50 of nearly 300 tracked conditions.

During the briefing, panelists provided an update on the state of fibroid research, discussed unmet needs in the field, and shared insight on what policy actions could help improve care for women with fibroids. They also discussed the Stephanie Tubbs Jones Uterine Fibroids Research and Education Act of 2021 (H.R. 2007), which would increase research funding for fibroids, improve awareness and training, and seek to measure cost to government payers.

This event was in partnership with the Fibroid Foundation, the Black Women’s Health Imperative, the White Dress Project, and the Society of Interventional Radiology.

Details

Date:
July 13
Time:
10:00 am - 11:15 am EDT
Event Categories:
,
Website:
https://swhr-org.zoom.us/webinar/register/WN_BpQUgLS-Q8KMZY-NLQ-UBA

Organizer

SWHR

Panelists

Mervyn L. Jones II
Senior Advisor, Ankura Consulting
Mervyn L. Jones II
Senior Advisor, Ankura Consulting

Mervyn serves as Senior Advisor of MLJ Strategies in partnership with Ankura Consulting, where he lobbies Congress on labor, tech, agriculture, healthcare, financial services, sustainability, armed services, and tax. Mervyn helps clients successfully navigate the legislative and regulatory landscape across the federal and state government and strives to build strategic relationships with stakeholders and clients so that they may secure critical investments.

Previously, Mervyn was the Director of Government Affairs, where he helped The Independence Fund successfully navigate the Veterans legislative landscape. Mervyn built strategic relationships with stakeholders for the Independence fund to secure Veterans’ rights and freedoms and help educate decision-makers on the inherent needs of Veterans and their caregivers.

Before leaving the Hill, Mervyn served as Special Assistant to Congressmen Tim Ryan and former Democratic Caucus Vice Chair Congressman Joseph Crowley. He was responsible for monitoring federal policy, interacting with state and local government stakeholders, and briefing lawmakers and their staff on Congressional and Administration initiatives and priorities.

Merv also served as the liaison to the Congressional Progressive Caucus, Congressional Hispanic Caucus, Congressional Alaskan Pacific Asian Caucus, and strong connections to the Congressional Black Caucus. He also serves as an Advisory Board member to the Congressional Black Caucus Foundation.

Sateria Venable
Patient Advocate and Founder, The Fibroid Foundation
Sateria Venable
Patient Advocate and Founder, The Fibroid Foundation

Sateria Venable is the Founder and CEO of The Fibroid Foundation, a global, patient advocacy organization. The Fibroid Foundation develops programming to support its community of over 26,000 women. Ms. Venable began her advocacy efforts in 2007. Since that time, the organization has developed a substantial global network.

Ms. Venable, who holds a Bachelor of Architecture from Carnegie Mellon University, has co-authored several scientific papers on fibroid research. She is the inventor of an undergarment inspired by her journey, which she hopes will transform intimate apparel for all women. A sought-after speaker, she has been featured in print and radio media, and has presented at gynecologic conferences worldwide.

Candace Tingen, PhD
Program Officer, Gynecologic Health and Disease Branch at NICHD
Candace Tingen, PhD
Program Officer, Gynecologic Health and Disease Branch at NICHD

Candace Tingen, PhD, is Program Officer at the Gynecologic Health and Disease Branch at the NICHD, where she provides technical leadership, guidance, and management of a research grant portfolio that focuses on the physiology and pathophysiology of human female reproduction and benign gynecologic diseases. She received her undergraduate degrees in biology and women’s studies from Duke University and her PhD in the laboratory of Dr. Teresa Woodruff at Northwestern University. Following her graduate work, Dr. Tingen served as Director of Research Programs in the Institute for Women’s Health Research at Northwestern University, where she managed a diverse portfolio of biomedical research projects from grantees across Illinois and coordinated the Illinois Women’s Health Registry. Transitioning to federal service, Dr. Tingen was selected as an AAAS Science and Technology Policy Fellow and served 2 years in the Office of Research on Women’s Health. Before coming to NICHD, she was the team lead for science policy and evaluation in the Office of Science Policy, Planning, Data Analysis and Reporting at the National Institute on Minority Health and Health Disparities.

Kedra Wallace, PhD
Associate Professor, University of Mississippi Medical Center Department of Obstetrics and Gynecology
Kedra Wallace, PhD
Associate Professor, University of Mississippi Medical Center Department of Obstetrics and Gynecology

Kedra Wallace, PhD, is an associate professor in the University of Mississippi Medical Center Department of Obstetrics and Gynecology. She holds a joint appointment in the Department of Neurobiology and Anatomical Sciences, where she also serves as an associate professor. Her areas of research include uterine fibroids, high-risk pregnancy, and anxiety and depression in women. She currently serves as Director of Research within the Obstetrics and Gynecology department and Program Director for the Masters of Science in Clinical Investigation Graduate program at her University.

Stephanie Saladino
Patient Advocate
Stephanie Saladino
Patient Advocate

Stephanie Saladino is an associate attorney at the law firm of Perkins Coie LLP in Chicago with a focus on healthcare regulatory and transactional law.  Stephanie received her JD and a certificate of health law from Loyola University of Chicago.  Through her practice as an attorney, Stephanie counsels an array of health care companies which has allowed her to gain a unique perspective into the industry as both a professional and as a patient.

After suffering with fibroids for years, Stephanie received a formal diagnosis in 2016 and has had several surgeries to combat the condition.  She became passionate about advocating for women’s health after learning how many women suffer from these issues silently. Stephanie’s goal is to help increase research funding for fibroids and to remove the stigma surrounding women’s health.

Kathryn G. Schubert, MPP, CAE
SWHR President and CEO
Kathryn G. Schubert, MPP, CAE
SWHR President and CEO

Schubert previously worked for the Society for Maternal-Fetal Medicine (SMFM), where she served as the organization’s chief advocacy officer, growing SMFM’s role nationally and building its reputation in women’s health.

As a member of SMFM’s executive team, Schubert played a critical role in the development of SMFM’s budget and strategic plan. She also acted as a trusted leader and consensus builder among women’s health stakeholders, particularly in the policy arena.

Prior to SMFM, Schubert served as senior vice president at CRD Associates, where she advised clients — including nonprofit patient advocacy groups, medical professional organizations, and private companies — on government relations and public policy related to health and biomedical research issues, among others. Schubert has also spent time working in legislative roles on Capitol Hill. She received her BA from Mary Washington College and her Masters of Public Policy from George Washington University.