One drawback to working in the fight against HIV can be that those closest to you—your significant other, family, or friends—have no idea what you’re talking about when you drop the barrage of buzzwords that dominate the HIV/AIDS field. PrEP? PEP? U=U? Never mind the alphabet soup of acronyms related to federal agencies and funding streams—CDC, HHS, HRSA, RWCA, HOPWA—aaargh! Anyone who overhears our calls and Zooms might think we speak an arcane foreign language.
Not so in the Arlington, Virginia, household of spouses Amy Killelea and Lauren Banks Killelea, where they live with their two sons—Jude, three and a half, and Harry, one and a half—and their “elderly” black lab, Ruby. Amy just started her own HIV-policy consulting company after working almost nine years at NASTAD, which works with all the state and local health departments on administering federally funded HIV and hepatitis programs. Lauren is director of policy and advocacy at the National AIDS Housing Coalition, which lobbies for funding and good policy for programs like the above-mentioned HOPWA (Housing Opportunities for Persons With AIDS).
In other words, this HIV policy-wonk power couple not only speaks the language of marriage and parenting together—they speak the language of HIV together, too. (In fact, no surprise, they met via their work.) One recent evening, after they had put Harry to bed—Jude, still up, could be heard in the background—they fixed a drink and chatted with TheBody about what they each do for work, how they met, and what it’s like to have so much HIV wonkery under the same roof.
Tim Murphy: Hi there, Amy and Lauren. Thank you so much for chatting with us. Let’s start by each of you relating how you got into the HIV field.
Amy Killelea: Hi! OK, I grew up in Massachusetts and graduated from college in 2004. My first job was at GLBTQ Legal Advocates and Defenders (GLAD) in Boston. It was an exciting time there. Marriage equality had just passed in Massachusetts, and they were working to preserve that and expand it to other states. They also had an AIDS Law Project, so from the get-go my work in HIV has been tied to LGBT equality.
That prompted my decision to go to Georgetown Law, where I did a ton of legal services working with low-income people living with HIV. People often ended up seeking legal services because they didn’t have access to health care. The ACA [Obamacare] had not passed yet, and Medicaid access was super limited, and there was lots of discrimination in private insurance.
So I decided I wanted to work in HIV policy. Before that, I did a one-year clerkship with the Vermont Supreme Court, which helped me learn how to think, write, and be analytical about the law. Then I started working with Robert Greenwald at the Harvard Center for Health Law and Policy Innovation, so for two years I was in the thick of HIV advocacy. It was 2010. The ACA had just been signed into law.
Then when I got to NASTAD, it was ACA all the time. Fall 2013, the first ACA open enrollment was starting. I was so excited that I was logging into healthcare.gov at midnight. Of course, the debut of healthcare.gov was a disaster, and it took a while to get it up and running properly. I had to go on the road and do a whole bunch of ACA trainings for health departments, which were constantly asking me, “Can you just send us the info for the plans? The site isn’t working.”
My nine years at NASTAD were an important time in health care. We were very active on the [Capitol] Hill with the [Obama] administration and the HIV advocacy coalition. NASTAD gets a ton of federal grants from CDC and HRSA to provide technical assistance [to state and local implementers] across the different parts of HIV care, such as RWCA [the Ryan White CARE Act].
Definitely our biggest thing was ACA implementation. We spent the Trump years in defense mode. Often, it looked like major pieces of the ACA, if not the whole thing, were going to fall. Now, in the Biden era, Medicaid expansion [for the 12 states that have not yet signed on] is the big story. I was pleased to see in the stimulus bill that they are putting some deal sweeteners in there to try to make [the holdout] states opt in.
Beyond that, we still have a huge affordability crisis when it comes to private plans within ACA. We should see subsidies expanded to people who make over 400% of the current federal poverty limit [the current income cut-off for any subsidies, which is about $50,000 for an individual and about $104,000 for a household of four]. And we should also see some action [toward greater affordability] on the employer-linked market.
But just last week, I left NASTAD and started my own consulting company. I’m very much staying in my lane of expertise, which is health care financing and coverage. I’ll do some work related to drug pricing and PrEP financial, and continue to work with RWCA grantees on all sorts of cost containments and navigating this complex new environment.
Tim: OK, terrific. Lauren, what about you?
Lauren Banks Killelea: Well, I grew up in Alabama and had long been interested in HIV, knowing I was part of the LGBTQ community. I had considered going to med school and always was interested in health.
When I was in fifth grade [in 1994], I went to Disney World with a friend and her dad. My dad had told me not to drink water out of the fountain because Gay Day at Disney had been a week before, and I could get AIDS from the fountain. So I was getting dehydrated but refused to use the fountain, and finally my friend’s dad had to get me on the payphone to tell my dad to tell me it was OK to use the fountains. That really stuck with me.
And in college in Alabama, I worked at a store with four women who had all been hospice caregivers to people who were dying of AIDS. So, many things about AIDS kept presenting in my life.
In 2010, when I was the executive director of an agency in Birmingham that worked on youth community organizing and racial justice, I was asked to join the board of AIDS Alabama. I was delighted. Then I was shocked to learn how common HIV was in the South and how much it affected communities of color, but how little was said about it in public discourse.
After two years on the board, I became AIDS Alabama’s director of policy and advocacy. We worked on state funding for ADAP [AIDS Drug Assistance Program], asking for $5 million every year. I also oversaw our Positive Leadership Council, people living with HIV who were interested in advocacy, training them on the issues, on speaking and advocacy skills.
Then we also had a youth health program where we were trying to get comprehensive [not just abstinence-focused] sex ed passed in Alabama. That struggle is still ongoing.
Then we got one of the navigator grants for ACA [to help people choose and enroll in ACA plans], which was huge.
Tim: How did ACA change Alabama?
Lauren: Big-time. So many people were able to get insurance for the first time in their lives. So many people didn’t know how insurance worked at all or hadn’t seen a doctor in years. And that included a lot of poor rural white folks. There’s this narrative that only people of color want government assistance. They would call and say, “Are y’all doing Obamacare?” And we would say we were doing the ACA.
Then under Trump, they would tell us they wanted the government to kill Obamacare, and we’d have to say to them, “No, Obamacare is actually what you have.”
I also worked on getting the state to use RWCA funds to pay for the ACA plans of people living with HIV. That was huge for those folks to finally have comprehensive health care, instead of just RWCA coverage of their HIV-related meds and care.
And I also did a ton of HOPWA advocacy, at a time when we were fighting [successfully] for the program to be modernized to better fund the hard-hit South. So all this time, I was developing my relationships with the HIV-related appropriations staffers in D.C.
Tim: OK, now we get to the fun part, which is, how did the two of you meet?
Lauren: The first time I saw Amy was at a FAPP [Federal AIDS Policy Partnership] meeting, right after AIDSWatch in 2012 or 2013. She was presenting, and I remember thinking she was cute and really smart. That was that. I was in a relationship at the time and still in Alabama.
Amy: Yes. I was living in D.C., had just started at NASTAD, and [AIDS Alabama CEO] Kathie Hiers introduced us at a later FAPP meeting. I also thought Lauren was really cute and smart. I think our first conversation was about Medicaid expansion or ACA enrollment.
Lauren: When the ACA site crashed, Amy emailed me, asking, “How do you get into the site to look at the plans?” And I was so swamped I didn’t reply for a week.
But meanwhile, I was single again, and our friend Melinda told me I should date Amy. So Melinda organized a couple dinners, and that’s how we got to know each other. Then I texted her to tell her that I was meeting with the new state director of RWCA in Alabama—and then we just kept texting about life.
I was still working for AIDS Alabama, so in 2014 we started long-distance dating for almost a year.
Amy: Then we decided we were done with long-distance. So we moved up to Massachusetts together, where we thought we would put down roots. But I had two different health care jobs there that were not a good fit.
Lauren: Meanwhile, I had been thinking for a long time about becoming an Episcopal priest—and Virginia Theological Seminary was at the top of my list, so I applied and got in. So, by this point, we had had Jude and we were both traveling with him to D.C. all the time. It was right after Trump was elected, and Amy was down here for work every single week. So we both ended up in D.C. in 2018 and have been in this area ever since.
Tim: Do your jobs intersect?
Amy: One-hundred percent. We’re at all the same HIV coalition meetings. I think it’s neat. We don’t do exactly the same thing, so our work is very complementary. I do wonky financing things like Medicaid, but I’ve learned from Lauren that you have to pair [health care] with things like housing if you want to get and keep people in care.
Lauren: One of the reasons I fell in love with Amy was hearing how passionate and wonky she was about HIV policy. At home, we’re on the same listservs, reading the same emails, on the same Zoom presentations. There are so many times I have questions about exactly what RWCA covers and I can just walk into the next room and ask her.
Tim: Do the two of you talk policy even when you’re not working?
Amy: All the time. We nerd out together.
Lauren: Three weeks before Jude was born, I was super pregnant, and it was the vote in Congress [in 2017] over whether to repeal ACA, at 2 a.m. Neither of us could go to sleep, so we stayed up in bed together watching it. I think if I were with somebody who didn’t understand [how important ACA is to me], they’d think I was crazy. When Amy says that an agency rule just dropped or an appropriations bill was released and she has to look at it immediately, I understand.
Tim: Do the two of you have different work styles?
Lauren: I just about spilled my gin. Yes.
Amy: I’m a little bit more intense and probably a little more rigid.
Lauren: Amy approaches things from the facts. She data-mines. Whereas I will scan something, get a handle on it, and then start talking [about it with other advocates]. I think I’m a bit more community-based.
Amy: True, I will want to learn everything I can about a topic and look at it from every angle. Lauren is far better at Hill visits than I will ever be, because she connects policy to people and why people should care about it.
Lauren: But if you wanna read somebody’s white paper, you should definitely read Amy’s.
Amy: I’m an introvert, and Lauren’s an extrovert.
Lauren: I’m not an extrovert. I’m an introvert who’s good at extroverting. I love to work a room, and Amy does not.
Tim: Are you the Bill and Hillary Clinton of AIDS policy, one a gladhander and the other a data wonk?
Both: [laughing] Absolutely not!
Amy: That’s not a good analogy for several reasons.
Tim: OK, so what does your nonpolicy life look like?
Lauren: We take turns getting up with the kids and having morning playtime, so the other can sleep in. Then our wonderful nanny comes and is with the boys so we can both go to work in our separate rooms. We do not spend the day together, which is good for our sanity and liking each other. We do not even have lunch together. But afternoons is playtime with the boys, Legos, and reading books and painting. We have dinner together as a family every night. Tonight was grilled chicken and vegetables. I love pasta dishes.
Amy: During COVID, with us all home together, it’s been tough figuring that out, but it’s also been a sweet time because we’ve spent far more time together as a family.
Lauren: On weekends before COVID, we’d pick a different Smithsonian Museum and take the boys, or we’d go to a little farm in Maryland where they can see the animals and pick blueberries and peaches. Amy makes pancakes with the boys every Sunday morning while I get ready for church stuff. I’m set to be ordained as a priest in June, hopefully. Right now, I serve 15 hours a week at a really cool church in Alexandria that was in fact one of George Washington’s two churches.
Tim: Lauren, what compelled you to become an Episcopal priest?
Lauren: I think the church has gotten Jesus and God wrong, concerning itself with a lot of things it doesn’t need to be concerned with, like sex. But if I push all that aside, I believe in a God who loves each of us and is with us in a good, supporting way. I love helping people tend to the spiritual part of their lives, being right with your soul and having inner peace.
Tim: So, Amy, it sounds like you’re going to be a preacher’s wife.
Amy: I never thought I’d hear that. But I support Lauren 100%. This is something she was born to do. It took getting used to for me. I grew up Catholic, but the church and I parted ways. It was not a good experience for me. But I support Lauren and bring the boys to church. I don’t consider myself a Christian, but Lauren and I agree on our core values.
Tim: OK, wonderful. So, how do you both envision the next five years?
Lauren: I want things to be steady. We bought a house. Hopefully, I’ll be ordained. I want to raise these boys up well.
Amy: I’m hoping for stability. Enjoying our kids. I wanna see my parents again. Simple things.
Lauren: I want Amy to grow her business. I want HOPWA to be better funded. And after a year in lockdown, I want a beach vacation. Without the kids. With a swim-up pool.