In the lead up to the first global march for endometriosis awareness, we were the first to report that the NIH was spending less than one dollar per capita on endometriosis research – a mere $7 million for a disease that affects at least 1 in 10 women and girls (2013 actual). Contrast this limited spending with the $20 million that was spent on Lyme disease in the same year, a disease estimated to affect only 329,000 in the U.S. With just this one comparison, you begin to see the true extent of the extreme spending disparities happening right now at the U.S. federal level. (You can see our original report HERE).
In fact, these unfair funding practices were among the main reasons we decided to found the EndoMarch and meet with elected officials in Washington, DC. We are so heartened to know that news of these extreme spending disparities is finally getting the attention that it deserves in the mainstream media.
NIH SPENDING FOLLOW-UP STORY
If you’d like to be a part of the follow-up story from the recent Guardian and Yahoo news articles, email us at firstname.lastname@example.org, and we’ll work with journalists for future stories on this topic and will do our best to include your feedback..
ORIGINAL ENDOMARCH GOALS
In addition to the broad goal of simply raising awareness, we will be seeking change in the following four (4) sectors:
We believe that it’s crucial to work more closely with U.S. governmental institutes that oversee health research and awareness campaigns, including the The National Institutes of Health (NIH), Centers for Disease Control (CDC), and the office of the Surgeon General (all of which fall under the Department of Health and Human Services). By appealing directly to these and other related agencies, it is our hope that endometriosis can be made a priority and a new area of focus in these agencies over the coming years. This is especially imperative, given the fact that the NIH spends less than $1.00 on endometriosis per capita. We also believe that the separate group within the NIH which is dedicated exclusively to Endometriosis, Fibroids, and Chronic Pelvic Pain in Women, be made much more visible to the public. Diabetes and other conditions have their own NIH-funded national television and print awareness campaigns; we believe the millions of women and girls suffering from endometriosis deserve the same. Our international team of volunteers will also engage in letter-writing campaigns to elected officials, as well as to international health organizations such as the World Health Organization.
We will be reaching out to the Department of Education, as well as to state-level departments, schools and universities directly, so that together we can launch nationwide educational campaigns and health screening in public schools and universities. By bringing endometriosis education to public schools and universities, school nurses, teachers, parents, counselors, and administrators will be better equipped to recognize and screen for endometriosis. Public schools already screen for a variety of health conditions, such as scoliosis, asthma, autism, obesity, and hearing and vision impairments. With pre-teen and teenage girls with endometriosis facing unacceptably lengthy diagnostic delays, we believe they especially deserve the same level of consideration as those suffering from asthma and other serious childhood ailments.
Even after numerous visits to their pediatricians, primary care physicians, gynecologists, school nurses, and emergency room practitioners, millions of women and girls with endometriosis (and adenomyosis) are still going undiagnosed for up to 10 years or more or are receiving grossly inadequate care. This is truly unconscionable and constitutes a national public health crisis. Therefore, we would like to collaborate with our nation’s medical and nursing schools to launch endometriosis educational initiatives so that future physicians, nurses, nurse practitioners, and physician assistants can more readily recognize the symptoms of endometriosis and provide the appropriate care. We will also be reaching out to medical researchers to help us find cures and develop noninvasive tests for disorders that have been devastating millions of lives for thousands of years.
And, finally, we are organizing this worldwide awareness campaign in an effort to bring the plight of those with endometriosis to the attention of the media and general public. Media coverage about endometriosis, for example, is woefully inadequate. There have been many hour-long specials about obesity and addiction featured on major television networks, or on the cover of national news magazines. However, we are still waiting for the same consideration to be given to the millions of people who have had their lives torn apart by one of the most painful and potentially crippling disorders ever catalogued in the history of humankind. We will also be reaching out to corporations, local businesses, and private foundations to consider supporting education programs and research so that a cure can be found and noninvasive screening tests can be developed.