CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign
FOR IMMEDIATE RELEASE
November 29, 2018
Tanika Gray Valbrun
Washington, DC — CARE (Community, Action, Research, and Education) About Fibroids, a nonprofit women’s health organization dedicated to raising policymaker awareness of the impact of uterine fibroids among women in the U.S., today unveiled a wide-ranging strategic partnership with The White Dress Project (thewhitedressproject.org), the nation’s preeminent patient support organization for women with fibroids.
First among their joint efforts, CARE About Fibroids and The White Dress Project will be actively co-promoting “Share Your Story,” an online platform housed on The White Dress Project’s website that collects first-hand stories from women who are experiencing or who have experienced symptomatic uterine fibroids.
The two groups also agreed to pursue future collaboration in the form of policy summits and in the recruitment and preparation of patients for participation in fibroid related policy discussion and regulatory processes.
“We are thrilled to partner with The White Dress Project as we continue to fulfill our mission of heightening policymaker awareness and creating a greater sense of urgency around the toll and challenge of uterine fibroids,” said Jenny Rosenberg, the Executive Director of CARE About Fibroids. “Combining the incredibly patient advocate network built by Tanika Gray Valbrun and the remarkable women of The White Dress Project, with the experience, scientific expertise, and policy know-how of CARE About Fibroids, we are catapulting our ability to bring uterine fibroids to the forefront of women’s health.”
“The White Dress Project is committed to growing, educating and enriching a community of women who feel confident, knowing they no longer have to suffer in silence with uterine fibroids. Our partnership with CARE About Fibroids is instrumental in making sure women are informed about policies that affect their health and equip them with the tools they need to be their own best health advocate,” said Tanika Gray Valbrun, Executive Director of The White Dress Project. “We are ecstatic about the work we will do together to bring this public health disparity to the forefront. We will best achieve our goals when we combine efforts to bring about outcomes in the best interest of women.”
About Uterine Fibroids
The U.S. Department of Health and Human Services’ Office of Women’s Health (OWH) estimates that between 70 percent and 80 percent of women will have uterine fibroids by the age of 50. Yet, due to lack of awareness or the belief that fibroids are a problem to be endured, many women go undiagnosed and untreated.
Among women in the U.S., uterine fibroids are significantly under-diagnosed and under-treated, despite being declared a public health burden by the National Institute of Health (NIH). Collectively, the price tag of symptomatic uterine fibroids, including lost work and disability, approaches $34 billion a year — on par with the combined annual costs of breast, colon, and ovarian cancer.
According to recent studies, women with “symptomatic” fibroids wait, on average, more than three years before seeing a doctor and almost a third (32 percent) wait up to five years. This lag can result in anemia, urinary tract infections, urinary obstruction, and kidney damage as well as cause women to experience body-issue anxieties, lower self-esteem, and worries about relationships and sexuality.
The problem is especially acute for black women where research demonstrates that fibroids are a pervasive health disparity. Compared to other American women, African-American women are three times more likely to develop fibroids, experience them at an earlier age, have multiples as opposed to a single growth, experience twice the pelvic pain and swelling, and have three times the rate of anemia. As a result, black women also have almost four times higher rates of hospitalizations and are close to three times more likely to undergo a hysterectomy to remove their fibroids. Similarly, myomectomy — the other form of fibroid surgery that leaves the uterus in place — is about seven times more common among African-American women.
In terms of the economic impact, it is estimated that more than $9 billion is spent annually for surgery, hospital admissions, outpatient visits, medications, and other direct medical costs for fibroid treatment. Symptomatic fibroids cost the economy above $17 billion annually in absenteeism, lost work, and short-term disability. An additional $8 billion is spent annually on uterine fibroid related pregnancy complications.
CARE About Fibroids
CARE About Fibroids is taking the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids, as well as a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care.
CARE About Fibroids is headquartered in Washington, DC, under the direction of its Executive Director Jenny Rosenberg and a Steering Committee of leading independent nonprofits focused on women’s health. Currently, the Steering Committee is comprised of: the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know. Additionally, general members of CARE About Fibroids include the American Sexual Health Association, the National partnership for Women & Families, and The White Dress Project.
The White Dress Project
The White Dress Project is one of the leading patient advocate organizations for women with fibroids. Our mission is to galvanize support globally, lead awareness efforts and raise funding for uterine fibroids research and education. Even though more than 200,000 hysterectomies are performed each year for uterine fibroids and the annual direct health care costs in the U.S. exceeds $2.1 billion, very little is known about fibroids prevention or treatment. The White Dress Project aims to empower women to share their stories to collective highlight the importance of this issue.
The White Dress Project, a 501(c)(3) founded by Tanika Gray Valbrun in 2014, is headquartered in Atlanta, GA. Through the efforts of The White Dress Project, the State of Georgia was the first state to declare July as Fibroid Awareness Month, with the passing of House Resolution 1898. That was just the beginning! Through the efforts of The White Dress Project, resolutions have also been passed in New York, Florida, South Carolina, Pennsylvania, New Orleans, Washington D.C., California, and Maryland.
The White Dress Project will: