Federally funded HIV and hepatitis programs vital to the health care of millions of Americans have endured deep funding cuts under the Trump Administration. With just a couple of months before President-elect Joseph R. Biden and Vice President-elect Kamala Harris take office, public health advocates like Amy Killelea have set expectations high for a renewed commitment to health equity and the expansion of programs that continue momentum towards fighting HIV and hepatitis in the U.S.
Killelea serves as the senior director of Health Systems and Policy at NASTAD, a leading nonpartisan nonprofit organization that represents public health officials who administer HIV and hepatitis programs in the U.S. Last week, NASTAD issued a statement urging the incoming Biden Administration to “immediately end several current policies that harm communities vulnerable to HIV and hepatitis.” Killelea leads NASTAD’s activities regarding policy, public and private insurance, and healthcare financing, which includes developing recommendations to inform state and federal policy.
Fixing the Damage Wrought by the Trump Administration
Terri Wilder: Thanks for speaking with me. NASTAD released a statement on President-elect Joseph Biden saying, “While we have made some progress over the past four years, we’ve also seen an onslaught of policies counter to the goals to end the HIV and hepatitis epidemics, including policies that have directly harmed immigrants, women, people of color, indigenous communities, and the LGBTQ community.” Can you talk about some of the policies that have been particularly harmful to the goals to end the HIV and hepatitis epidemics, and what the Biden-Harris administration will need to do to correct them?
Amy Killelea: There have been several policies that will need to be reversed—hopefully, thoroughly and immediately—many of which are really doing the most damage to the communities that are most impacted by HIV and hepatitis. Some of those include the administration’s rollback of the nondiscrimination protections that were included in the Affordable Care Act’s 1557 provision. The rule was finalized fairly recently.
The impact of taking away nondiscrimination provisions that expanded access to comprehensive and culturally competent care to transgender individuals, the LGBT community at large, and people living with HIV—that’s a really big one. That is high on the list and would go a long way, both in providing access to nondiscriminatory health care, but also signaling to the community that they matter, that they’re seen. That would make our health care system work better for those communities.
Another area that I would say—and I call it an area because I think it’s made up of both policy and rhetoric—is around immigrants. We saw that early and often from the Trump administration, in terms of both the policies limiting immigration and the rhetoric that describes immigrants in this country.
From a policy standpoint, [we call for] reversing the public charge rule [regarding U.S. visa applicants], which was finalized about a year ago now, and has had both a practical and chilling impact on access to a range of services from immigrants. We mention it in our statement, and it’s really important—it goes along the same lines of changing this rhetoric around racial justice and censoring anti-racism.
One thing that has done the opposite of that has been the executive order that was written a month or so ago curtailing the ability of federal agencies and contractors—in particular, to do racial justice and diversity trainings. We’re already seeing a chilling effect in terms of anyone receiving federal funding doing that.
So, some of these are very specific policy reversals or executive order reversals. But we are looking forward to a new commitment that really centers health equity, centers anti-racism—and in new, positive ways.
HIV/Hepatitis Health Policy Areas With the Greatest Hope for Immediate Progress
Wilder: In a recent statement congratulating President-elect Joe Biden and Vice President-elect Kamala Harris, Positive Women’s Network-USA expressed concern about the Affordable Care Act, stating that “tens of thousands of people living with HIV in the U.S. gain access to health insurance through the ACA, mostly through the expansion of Medicaid, though also through the ACA’s protections for preexisting conditions.”
What will the new administration need to do to ensure continuing access to care, not only for people with HIV, but also with HIV prevention services for the general population?
Killelea: We watched with bated breath the oral arguments at the Supreme Court in the latest legal challenge to the ACA, and I certainly am hopeful that the court ultimately rejects that challenge. Even though the law still stands, there has been real damage done to it over the past four years.
There are a couple of things that can be done. From an administration standpoint, reversing some of the harm that’s been done to the Affordable Care Act—for instance, quickly reversing some of the rules that weaken the private insurance protections. We saw rules that lifted some of the benefits and coverage requirements for certain plans. We’ve got these junk plans that are flooding the market, that were not allowed under the Obama Administration. We want to see that policy reversed immediately, and that then strengthens the individual market with the ACA.
We saw over the past several years the Navigator Program—which plays such an important role in educating people living with HIV, at risk for HIV, and people living with hepatitis, on the importance of health insurance and how to sign up for health insurance—that federal program was absolutely decimated. There could be an opportunity to bring that back to life in a new administration.
We don’t yet know which party is going to hold power in the Senate. We are waiting on two special elections in Georgia. But I’d say, without the Senate—and even if we take the Senate by a hair but don’t get a filibuster majority—the legislative road to expand the ACA is probably fairly limited.
From an appropriations standpoint, though, there can and should be advocacy for more stable funding for, for instance, the Navigator Program, which I just talked about, and the Prevention and Public Health Fund, which was very important but has been slowly but surely chipped away at over the years.
The only other thing I would say is that one of the biggest missed opportunities of the ACA for our communities has been the failure of states to take up the Medicaid expansion option. We see a lot of continued disparities among the states that have not expanded their Medicaid programs—that is certainly a hindrance to our efforts to end HIV and eliminate hepatitis.
From an administrative standpoint, we could see some progress there for the Centers for Medicare & Medicaid Services, which oversees Medicaid, to play a bigger role in working with states to expand Medicaid, and reverse some of the philosophy over the past four years of constricting the Medicaid program. That would mean going back to the core of what the Medicaid program is supposed to do, which is increase access to the folks who need it most. We are looking forward to a bigger commitment from CMS, and we should hold them accountable for that.
Wilder: Any thoughts on the prevention side?
Killelea: Through the ACA, I do think the Prevention and Public Health Fund is something that we could see get more attention. That was something that got funding pulled for it pretty quickly into ACA implementation.
On the prevention side at large—this is a broader appropriations question for our HIV and hepatitis prevention—I’d say: surveillance infrastructure.
We are hearing from our members who are at the health department level that the impact of year-on-year cuts to governmental public health funding has a real impact on the ability of these programs to provide foundational public health work—and that if we want to overlay on that a commitment to actually ending HIV and hepatitis, we need to not only flat fund, but increase our investment in prevention. There are opportunities to do that through appropriations to HIV prevention and Ryan White programs.
We saw a glimmer of this in the Obama Administration, but not enough momentum behind it to make sure that the entire health care system is committed to prevention.
We are hopeful that in a new administration, we can really push to make prevention a goal and responsibility across the entire health care system, not just in scarce and underfunded grant programs.
Funding Prospects for the "Ending the HIV Epidemic" Intiative and Other Policies
Wilder: When we talk about fully funding the Ending the HIV Epidemic [EHE] initiative so that we achieve our goal of reducing new infections by 90% by 2030—what really needs to happen over the next four years to make that a reality?
Killelea: I can’t underscore enough the importance of investment in public health infrastructure. Continuing the Ending the HIV Epidemic initiative and ensuring that the new administration embraces it as an important national goal and initiative is important; that is something that we certainly will be pushing the administration to do.
In terms of the funding landscape, it’s really got to be a continued commitment in Congress to fully funding the EHE initiative. Then, also, not losing sight that the programs that undergird the EHE initiative are line items for CDC [Centers for Disease Control and Prevention]-funded HIV and hepatitis programs. HRSA [the U.S. Health Resources and Services Administration] has funded Ryan White programs, and we really need to look at that and make sure that we are investing enough in the foundation, but then allow these programs to build on top of that foundation the innovation that we need to move the needle on ending new HIV infections.
The only thing I’ll overlay on that is that we’re obviously in the midst of a pandemic and public health crisis with COVID. So it’s very, very important for the new administration and for Congress to be thinking about HIV and hepatitis as an important part of our COVID response—that we’ve got expertise and infrastructure that we need to invest and then build in the HIV and hepatitis space to make our response to COVID stronger and more cohesive. That’s been a lost opportunity of the past eight months.
We’re hoping for new opportunities to really step back and look at our infectious disease infrastructure more broadly to combat COVID—that will be really important. It goes back to making sure that our public health infrastructure is secure and solid so that we can overlay ending the [HIV] epidemic.
It is also imperative that we reverse some of the damage done to the Medicaid program over the past four years. That’s outside of ACA attacks. Medicaid itself has been under attack, with work requirements and other initiatives that have come under legal scrutiny. If we’re going to end the epidemic, we need to invest in our entire safety net, with Medicaid being a really big part of that.
Wilder: NASTAD’s latest policy update stated that the U.S. House of Representatives “released and passed an updated version of the Health and Economic Recovery Omnibus Emergency Solutions Act, called HEROES, which proposes an additional $100 million for the Ryan White HIV/AIDS Program, and $65 million for the Housing Opportunities for Persons with AIDS Program, called HOPWA.”
However, it also stated that the package is unlikely to be taken up by the Senate. Why is it unlikely to be taken up by the Senate, and what can that mean for people with HIV in the United States?
Killelea: What we’ve seen all summer—and has contributed to this seven-month gap between stimulus bills—is a real political, partisan divide in how to approach COVID and in whether to structure a stimulus bill. There were some election politics in some of the delays up until now, and now we’ll see what happens in the lame duck.
In terms of the scope of the HEROES Act, and particularly the provisions around the Ryan White program and HOPWA, we have and we will certainly continue to advocate for that investment in a stimulus package. We think that’s incredibly important: to make programs whole and ensure that they are able to continue to provide services. The political reality is that the Senate is very far off, that the conversations happening in the Senate have been on a much, much smaller—sort of targeted—scale than the scope and breadth of the HEROES Act. Where we end up is likely somewhere smaller than the HEROES Act, and hopefully somewhere larger than some of the initial Senate bids.
What we’re now seeing, certainly, from our members out there in the field, is that the pain of the pandemic and the economic crisis related to the pandemic is certainly impacting programs and the clients they serve. Fighting for a stimulus in the lame duck, or in the new Congress if the lame duck does not take it up, is a priority for NASTAD. We think that’s incredibly important to ensure that people have continued access to HIV and hepatitis services.
Renewing the Conversation on Housing, Drug Pricing, and Treatment Access
Wilder: I worry about issues like housing for people with HIV and Ryan White services. What kind of conversations are happening with the Biden-Harris transition team? Have those started? Are they aware of some of these important issues within the HIV and hepatitis C communities?
Killelea: Yes, the conversations have started. They started pre-election, when it was the hopeful transition team, and now post-election, when it is the actual transition team.
We at NASTAD sent a set of priorities to the transition team that very much mirror the different topics that we’ve discussed. The Federal AIDS Policy Partnership, which is a fairly big coalition that represents national and state advocacy organizations and provider groups, and people living with HIV across the country—we will be submitting a broader set of priorities for the transition team.
On the question about housing, that is absolutely a part of the priorities that are being articulated up to the transition team, and in Congress. There is a reason why HOPWA is in the HEROES Act and HOPWA was included in the CARES Act funding, along with Ryan White. We certainly hear and see and know that access to housing is an incredibly important part of access to care and viral suppression.
We are hopeful that in a new administration, social determinants of health are taken more seriously, and housing is taken more seriously, and HOPWA is funded at the level that it should be. That has been a chronically underfunded program.
So the short answer is, yes, those conversations have started. We will continue those conversations as these folks are appointed to different positions. And we do look forward to continuing that conversation with both Congress and the transition team.
Wilder: Are there any other important areas that the HIV community should be keeping an eye on, in terms of advocacy opportunities with the Biden-Harris administration, whether it’s in HIV care or prevention?
Killelea: One area that we haven’t talked about yet is around drug pricing, affordability, and access. That has been a policy priority of NASTAD. It’s relevant, both in the treatment space and biomedical prevention space. We’ve seen in the past, and are continuing to see right now, advances in treatment and biomedical prevention. It really does and will continue to revolutionize the HIV and hepatitis epidemics.
Particularly, our federal policy approach to drug pricing and access needs to keep pace with the complexities of our entire drug pricing and delivery system. So we’re looking forward to participating in that conversation with the new administration.
Drug pricing is sort of a perennial political topic. It is a very complex array of considerations for our programs and people who are dependent on fairly costly medication. We look forward to being very much a part of that conversation with the new administration and making sure that we are balancing access with cost, and making every decision based on sound evidence and clinical guidance.