It wasn’t long ago that Finkenauer first spoke publicly about her experience with the painful condition, which is caused when uterine tissue grows outside of the uterus. She’d stood on the House floor in March, Endometriosis Awareness Month, describing the brutal pain she’s endured throughout her life. Finkenauer said that she’d been “lucky” to be diagnosed as a young woman; on average, it takes 7.5 years for women to receive an accurate diagnosis. An estimated 1 in 10 women are affected by it worldwide.
The same day she gave that first speech, Finkenauer launched the bipartisan House Endometriosis Caucus. Along with co-chair Jenniffer González-Colón (R), Puerto Rico’s representative to Congress, and 28 members, Finkenauer wanted to raise awareness about the condition. Their goal was to double funding for research. “It’s time that people across the country know about what this is,” she’d said in March. “Every day, women are pushing through their pain and living their lives.”
Several months later, in the middle of a pandemic, Finkenauer has met that goal. I spoke with her on Thursday about how women have been responding in the months since she first spoke publicly about her experience, what her caucus’s work has looked like during the coronavirus and more.
This interview has been edited for length and clarity.
Lena Felton: Hi, Rep. Finkenauer. How are you?
Abby Finkenauer: Oh, hanging in there. I hope you’re doing well. And thank you for wanting to talk about this. I think it’s important for women everywhere, so thank you.
LF: Definitely. Well, let’s start with the news today. I’d love to hear from you about the amendment and what you hope it will accomplish.
AF: So today on the House floor, I was able to pass an amendment that would double endometriosis funding from the previous year’s allocation. It is something that was incredibly important to me when I found out back in February, when I really started looking into everything, that endometriosis was one of the least funded conditions in the entire country. And yet it affects 7 million women in the United States and 1 in 10 women worldwide.
There is such a lack of funding, and because of that, there are a lack of options for how women can treat this. We desperately need it for this to actually spur more research, to get more options, to hopefully find out why this happens and if it’s preventable.
LF: It does seem like that’s one of the biggest issues with endometriosis in particular. It’s just that there’s so little that’s known about it.
AF: Exactly. It’s astounding to me that we have named this condition and have known about this condition since the 1920s, and yet still there is such a lack of awareness and research around it. It affects so many women — women who may not know they even have it; or who were told that their pain, which can be very severe, is normal; or those who struggle with infertility for years and may not know that this could be why; or women who have hysterectomies at a young age, because they’re in so much pain and don’t realize that it could be endometriosis.
The stories I’ve heard have been heartbreaking and also harrowing.
I understand that I’m one of the lucky ones and found out at a young age. My mom believed me when I said I was in pain, took me to doctors until they actually did a laparoscopy to find out that I had it. And I’ve been lucky in that mine I’ve been basically able to manage. There are some times where it’s really tough, but I’ve been one of the lucky ones. Some of the stories I have heard, it’s why some women have had to drop out of the workforce. It takes decades of their life away. And again, it’s why we have to continue to push this and do more.
LF: I was going to ask, after you spoke publicly about your struggle with endometriosis, what was the initial reaction that you got from women?
AF: The one that really got me — I mean, women are reaching out and saying that they heard their pain described for the very first time and for a moment felt less alone. And when they were reaching out saying this, it made me feel less alone as well.
You know, most of my congressional career so far has been focused on making sure that we have investments in infrastructure and roads and bridges and being there for our farmers and our small businesses. That’s really been my focus. But this was something that I knew I was uniquely positioned to talk about, even though it was going to be difficult. I knew if I did it, the amount of women who may hear about it or have some answers would be all worth it. And it has been.
LF: For your colleagues who’ve never heard about this condition, even for your constituents and for the general public, how do you convince people that this is an issue that matters?
AF: Because of the fact that it affects 7 million women in the United States, that’s where we start, is making sure they understand the scope of this. On top of that, we actually know that we lose about $78 billion a year out of the workforce because of the fact that this can, again, attack women in very different ways. It can be so severe that they have to drop out of the workforce, not because they’re not tough enough to get through it. Again, they are tough as hell, but because of the fact that it can be so severe and they don’t have any other options.
LF: What has the work of your caucus has looked like throughout the pandemic and the protests? On a practical level, how much time are you all able to sort of devote to this issue, and have your priorities shifted or changed at all?
AF: Well, our priorities during the pandemic have been, you know, about the pandemic. So it has been helping our small businesses. It’s been trying to work on testing, on PPE. Obviously, I announced the caucus in March, and we shifted focus pretty quickly. But in the meantime, the appropriations process was still happening. In the middle of a pandemic, you still have to fund the government and different agencies. So this was still an opportunity to be able to uplift this and increase the funding.
I was still able to talk to the appropriations chairwoman [Rep. Nita M. Lowey (D-N.Y.)], who I could share my story with, and the chairwoman of the subcommittee that this comes out of [Rep. Rosa L. DeLauro (D-Conn.)]. And that’s the other extraordinary part of this. This is the first time in history that the appropriations committee has been led by two women, both a Democrat and a Republican. And to be able to talk to Congresswoman DeLauro, who had ovarian cancer, about this as well, when she’s the one who truly at the end of the day is able to approve the funding or not — having those types of conversations were really powerful and helpful. It gives me a lot of hope for the future.
The bipartisan caucus we started, I have a lot of ideas for it down the road. And we are just getting started. But obviously, during a pandemic, our focus is on the pandemic. We will continue to uplift this when appropriate and continue to do programming around it and talking to different caucus members as well.
LF: You just mentioned working with other women. Because this caucus is made up of so many young and first-time elected women, I have two questions wrapped into one. Do you think that this momentum behind the caucus and the amendment would have been possible several years ago? And I’d also just love to know what it’s been like to work with all of these other women on an issue that affects so many women.
AF: You know, I don’t know if it would have been possible a few years ago. It’s never been talked about. It’s never been brought up. No one’s ever shared a story or brought light to the issue before. So I think the caucus is imperative and why I started it.
Getting to talk to the folks that are in the caucus we created, the conversations have been easy, especially when we first started it. I told them my story, and it was extraordinary to hear some of the women tell me that, you know, their sister had it, or even some of the men who are in it saying that their wives have it or their daughters have it or their best friend has it. I mean, it’s not just women in this caucus. It is women and men.
It’s been extraordinary to see caucus members who have heard outreach from their constituents who are excited that they care about this issue, because it’s one that a lot of women have suffered in silence with for too many years.