Virtual UpEndo Citizen Advocacy Coalition Briefing

Endometriosis affects as many as 10% of women of reproductive age. Yet it is one of the most misunderstood and misdiagnosed diseases. The Endometriosis Foundation of America (EndoFound) initiated the UpEndo Coalition, carrying on from former Congresswoman Abby Finkenauer’s efforts to double federal funding for endometriosis.

UpEndo acts as a means to sensitize the government and the public about endometriosis. It also advocates policy changes, increases awareness about disease symptoms, management, and treatment, and promotes new research in the field.

EndoFound’s Diana Falzone recently hosted a Virtual UpEndo Citizen Advocacy Coalition with EndoFound Ambassador and former Congresswoman Abby Finkenauer (current candidate for the US Senate from Iowa). The meeting covered best advocacy practices for the Congressional Day of Action. It also included information about how people could contribute to the cause using easy-to-follow templates.

Abby Finkenauer’s journey

The meeting started with a recollection of Abby Finkenauer’s personal journey. This journey inspired her to push for Congressional funding for endometriosis research and treatment. Finkenauer recalled how she suffered debilitating pain due to a symptom flare-up while waiting for a delayed flight home.

That debilitating pain made her contemplate hysterectomy as a permanent cure. But a visit to EndoFound’s website changed her perspectives for the better. She learned that the disease is quite common and that a hysterectomy does not always solve the problem.

She also came to know that endometriosis was at the bottom of the National Institute of Health’s (NIH) list for funding. This prompted her to start an endometriosis caucus cutting across party lines and pushing for increased federal funding for the disease.

UpEndo citizen advocacy coalition for the Congressional Day of Action

Finkenauer stressed the importance of people coming out and voicing their stories. While data is important, it is those personal stories that really inspire and motivate people. She recollected her own experiences in narrating her story. This, she said, allowed people to instantly connect and relate to her.

She spoke about how collective efforts and voices can help achieve goals. Some ways in which this can be done are sending out emails, tagging public representatives on social media, and calling the state rep’s office. Increasing community participation in events such as the UpEndo citizen advocacy meetings can also help amplify voices.

Status of appropriations

Tyler Wilson, who served as former Chief of Staff and campaign advisor to Abby Finkenauer, detailed the status of Congress’s appropriations for endometriosis. The appropriations process for FY 22 wrapped up a couple of months ago. By working with the endometriosis caucus, Congress was able to increase research funding from the NIH for endometriosis.

Finkenauer’s team focused on identifying federal agencies, such as the Veterans Affairs Administration that have the biggest allocations in terms of funding. These agencies can provide grants to hospitals and medical institutes. The team worked with them to ensure that endometriosis is at the top of the list for research grants.

For those not in the US, Wilson suggested using social media as a way to let lawmakers know endometriosis should be a priority. Action items from UpEndo and EndoFound are also effective means of making your voice heard.

Endometriosis affects all women around the world and knowledge gained anywhere is for the collective good. Therefore, Finkenauer advised all women to be their own advocates and push lawmakers in their own countries to prioritize endometriosis awareness and funding.

Parliamentary decisions for funding

Abby Finkenauer responded to a participant’s question as to how decisions in parliament are made for such conditions and how funding is secured. She reiterated that the US has not traditionally done enough for women’s health. Therefore, it is important to change the way how lawmakers view and prioritize women’s health, she said.

Reaching out to lawmakers

Responding to a question on how to reach out to lawmakers, Tyler Wilson suggested first trying to find out details on the Secretary of State’s website for the corresponding state. Other good places to search include the house.gov and senate.gov websites.

The UpEndo Coalition also has an Action guide on the EndoFound website. This contains links and information on how to get in touch with Congressmen/Congresswomen and Senators. The guide also contains email and social media templates and phone call scripts that people can use to reach out to their public representatives.

Workings of the endometriosis caucus

The endometriosis caucus is not an ideological caucus. Instead, it is a bipartisan, issue-based one that includes concerned lawmakers from both the Democratic and Republican parties.

The caucus enables advocacy for higher funding, increased awareness, treatment methods, and policymaking. This also enables organizations working on endometriosis to directly interface with the Chair and address the caucus collectively.

Finkenauer stressed that people should not hesitate in approaching representatives. She reaffirmed that it is not a big ask. It is the job of the representatives to pay heed to the needs of their constituents and address their concerns, she said.

Positive developments in Connecticut

Concluding the meeting, Connecticut representative Jillian Gilchrest spoke about how she helped form an endometriosis working group. The group enabled those impacted to share their personal stories.

As a first initiative, representative Gilchrest also said that they’ve passed legislation that will enable training for physicians and a partnership with UConn Health and Jackson Laboratory to start a biorepository.

She emphasized that the state delegation will work together with UpEndo to push more changes and ultimately impress upon the federal delegation to bring required changes at the federal level.

For more information please e-mail: jeanne@endofound.org or diana.falzone@endofound.org.