Washington, DC, December 24, 2017 — Former U.S. Department of Health and Human Services official and Capitol Hill veteran Jenny Rosenberg today announced the formation of CARE (Community, Action, Research, and Education) About Fibroids, an innovative women’s nonprofit health organization dedicated to elevating the conversation around uterine fibroids for all U.S. women.
Fibroids are a condition affecting between 70 to 80 percent of women by the time they are age 50. CARE About Fibroids will serve as the catalyst for increased awareness and advocacy of uterine fibroids, giving voice to the estimated 30 percent of women of reproductive age who face its symptoms – from extreme pain and heavy menstrual bleeding to urinary and bowel dysfunction, sexual problems, pregnancy complications and infertility.
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 for 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.
“Uterine fibroids can take a physical and emotional toll on women. CARE About Fibroids is going to take the conversation around uterine fibroids out of the shadows and into the light,” said Jenny Rosenberg, the nonprofit’s organization’s Executive Director. “It is time for the nation to ‘CARE’ about uterine fibroids so that more women will receive the timely, appropriate care they need from their health care providers.”
CARE About Fibroids is headquartered in Washington, DC, under the direction of its Executive Director and a Steering Committee of leading independent nonprofit patient/consumer organizations focused in women’s health. Currently, the steering committee is comprised of (in alphabetical order): the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know. More steering committee members will be announced in 2018.
About Uterine Fibroids
The formation of CARE About Fibroids comes at a time when 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. 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 3.5 times higher rates of hospitalizations and are 2.4 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 6.8 times more common among African-American women.
In terms of the economic impact, it is estimated that up to $9.4 billion is spent annually for surgery, hospital admissions, outpatient visits, medications, and other direct medical costs for fibroid treatment. Additionally, fibroids cost the economy up to $17.2 billion annually in absenteeism, lost work, and short-term disability and approximately $7.8 billion a year for pregnancy complications. This is because fibroids interfere with between 10 and 40 percent of pregnancies.
CARE About Fibroids to Spearhead a National Dialogue on Uterine Fibroids
CARE About Fibroids will take the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids and create a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care. Plans call for activities such as conducting research and disseminating scientific findings to the general public, as well as policy makers, on uterine fibroids; highlighting the need for public and private investment in uterine fibroid research; hosting workshops and advocacy forums; and, providing women with the information and tools to become strong self-advocates for their care.
In early 2018, CARE About Fibroids will launch an online resource with evidence-based facts about fibroid risks, diagnosis, treatment options and disparities in care and create a national video library of patient stories to make the burden of uterine fibroids top-of-mind for physicians, payers, and policymakers. To receive alerts about the launch of CARE About Fibroids and to learn more about what is to come in 2018, please visit: http://careaboutfibroids.org.
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