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Transcription:

Connie: Hello and welcome to another episode of Avalere Health Essential Voice. Our podcast show covers a wide range of healthcare topics. My name is Connie Jorstad, and I’m an Associate Principal here at Avalere and I lead our HIV policy work.

I’m happy to be joined today by Dr. Stephen Lee, the Executive Director at the National Alliance of State & Territorial AIDS Directors (NASTAD), where he oversees their programs, which include healthcare access, prevention, hepatitis, drug user health, health equity, policy and legislative affairs, and health systems integration. His experience as a physician gives him a practical perspective to policy and program implementation. Prior to joining NASTAD, Stephen was a global HIV expert for the Elizabeth Glaser Pediatric AIDS Foundation, where for 13 years, he managed the development and implementation of programs that provided prevention, care, and treatment services to individuals affected by HIV.

We’re also joined by Beth Crutsinger-Perry, who’s serving as NASTAD’S Board Chair this year and is the Director of Washington State’s Office of Infectious Disease, where she provides leadership, direction, oversight, and vision for the Office of Infectious Disease programs, which include the state’s AIDS drug assistance program (ADAP), the PrEP DAP, the hepatitis C and drug user health program, HIV community services, and sexual health and prevention. Beth has 26 years of experience in infectious disease administration programs and management.

In today’s episode, we’re going to look at how state policies have changed as HIV prevention and treatment have advanced, and how social determinants of health and other systemic barriers are key to addressing health disparities and ending the HIV and viral hepatitis epidemics in the US.

Stephen, Beth, it’s great to have you both join us for this episode of Avalere Health Essential Voice. For those of you who don’t know, NASTAD is the national organization that represents state, territorial, and local health department HIV and viral hepatitis programs. NASTAD was formed in 1991 when advocacy at the federal level for policies that supported HIV prevention and care was high. The Ryan White HIV AIDS program, as it’s now known, was just getting started and treatments for HIV infection were difficult to administer and tolerate. Prevention consisted of individual and group-level behavioral interventions. HIV test results could take weeks to come back, often resulting in people not returning for the results and being unaware of their status.

Prevention, testing, clinical care for HIV, and policies related to HIV have changed a lot in 30 years. In particular, we’ve seen a shift toward more biomedical interventions including pre-exposure prophylaxis (PrEP) and an understanding that sustained viral suppression or achieving an undetectable viral load eliminates the risk of transmitting HIV, which is what we refer to as U=U (undetectable equals untransmissible).

Beth, the theme for your Chair’s Challenge this year is 30 Years of Leading Change. I’m interested in hearing from you how state health departments have been able to keep up with all of the advances in the last 30 years. What have been some of the most significant challenges and what successes have you seen in program implementation and policy?

Beth: Thanks, Connie. Thanks for the opportunity to be here. This is a really big question. I’m very proud of NASTAD’s history and 30 years of change. It has been a constantly changing environment. When I ponder this question, I really think about successes and challenges simultaneously, especially from a state health department standpoint. For example, we were so excited about the Affordable Care Act and its implementation in 2014. However, that success creates significant challenges for a state AIDS Drug Assistance Program (ADAP), or a Ryan White program.

When you’re in the state system, making these shifts and pivoting as the condition has changed and science has evolved have been a struggle, yet we find so much success in making the change. It can just be a glacial movement sometimes from a system standpoint.

Some other important policy efforts have streamlined our work over time. I remember the Ryan White reauthorizations of 2006 and 2009. Incredible changes happened to the statute for Ryan White at that point. When we think about those reauthorizations and the learnings that happened to make those law changes and make it easier in the states and communities to be able to implement access and equitable services, those were really important.

Obviously, the Affordable Care Act was intended to expand access and give individuals who were in many instances dependent upon the Ryan White program more comprehensive healthcare coverage. I think the struggle was the diversity of implementation across our country. It wasn’t comprehensive implementation, so what was successful in some jurisdictions continues to be a struggle in others. I think the inequities across our country are significant challenges in all of these policy implementations.

We have also watched funding fluctuate over time. Certainly, with reauthorization, there were changes in funding. We have seen fluctuations as funding formulas have changed at CDC. Some states win and some states lose. Those have always been implementation struggles and challenges and yet we have continued to evolve through them and found ways to braid our funding in a way to keep our services afloat.

I also can’t avoid talking about the ADAP waiting lists, which was a very difficult time in our history. Prior to Medicaid expansion, we watched states put folks on lists who were not eligible for their services, so they went without those services. NASTAD was tracking those names and I can tell you that at one time, we were tracking the number of individuals who died on those waiting lists. It was a very difficult time in our history, but one that I think has been an important touchstone to make sure, along with our partners at the Health Resources and Services Administration (HRSA), we have moved in a direction to avoid those difficult times in the future.

I think we learn from these challenges as best we can and try to make things better. I do believe we’ve done that from an ADAP standpoint. Data requirements have changed over time. We want to see these data changes happen, we want to have good data, but at the state and city level, those are systems that have to be changed. Even adding simple data elements can be quite challenging for state and city systems. So while, again, success is better data that creates a better way of knowing who we’re serving and who we’re not serving and who we should be serving, implementation of those innovations can be quite long term and expensive.

Watching HIV go from a death sentence to what many of us refer to now as a chronic condition has certainly been a success. Infectious disease doctors led the way for the treatments and today, many people are being effectively served, managed, and virally suppressed through primary care, through federally qualified health centers, through Part C clinics, and not having to depend only on a limited set of infectious disease docs. That has been a success.

The last thing that I’ll say is the systems that we have built through these policy and program implementations have done an excellent job of building up a comprehensive system of care. However, I think that system serves White people much better than it does Black and Brown populations. We have not done a good job in these implementations and these policy changes to serve everyone and provide access to everyone and I think that’s where our challenge is now.

Connie: Beth, I really appreciate the insight that with every success comes another bunch of challenges. Certainly, program implementation at the state level and understanding the interplay of state policies and regulations and laws with federal or clinical advances is a challenge to navigate.

Stephen, we’ve certainly come a long way. I would be interested in hearing your perspective from the national level. What are some of the biggest challenges for HIV prevention and treatment moving forward? Are there some policy changes that can possibly address those challenges?

Stephen: Thank you, Connie, and thanks to Avalere for inviting Beth and me to participate in this podcast. So, as you’ve mentioned, we’ve seen significant improvements in the continuum of care for HIV in terms of testing, prevention, and treatment.

In testing, we’ve got more accurate rapid point-of-care tests available, and we now have PrEP in our prevention toolbox. We don’t do this as much here in the US but globally, there is the dapivirine vaginal ring that puts prevention and control of prevention in a woman’s hands. We also have prevention of mother-to-child transmission and medical male circumcision.

On the treatment side, we’ve got simpler, once-a-day regimens that really improve outcomes.

Where the challenge is now is making sure that people have access, that there’s equitable access to all of these tools. Sexism, racism, stigma, discrimination, and the criminalization laws that exist are real barriers that limit the impact that these opportunities have for people who are in marginalized populations.

Beth and I didn’t coordinate our responses, but some of the things that I’ve thought about fit really nicely with some of the things that Beth just talked about. Financing for example—how we currently finance and support our health departments. We need to see a paradigm shift in how that happens, from increased funding to more flexibility to trying to break down silos across funding portfolios.

We need to be proactively engaging communities in the response, which means not just doing lip service to say that folks are at the table. Are they participating in discussions around how policies and programs are designed, how they’re implemented, how they’re evaluated? Are those individuals representing the BIPOC community, the Black, Indigenous, and People of Color communities that are most impacted? We also need to diversify the workforce. Beth mentioned the clinical workforce, but we also need to think about social workers, pharmacy technicians, mental health workers, and people who are working with substance users and make sure they reflect the communities that are most impacted by the epidemic.

Finally, building again on what Beth mentioned, there is the data piece. I appreciate that the data challenges are immense in terms of actual implementation, but we do need the data of who is affected, who is accessing services, and who is not so that we can then adjust our resources, whether it be financial or human resources or programmatic interventions.

Connie: Right. So, a lot of what you’ve mentioned about moving forward really resonates with my next question, which is in reference to the national HIV AIDS strategy, which was just released. A lot of the things that you’ve articulated—stigma, racism, the criminalization laws—all those things have been mentioned in the National HIV/AIDS Strategy (NHAS) as things that need to be addressed. So, it’s great to see that there’s some consistency across the HIV policy realm.

One of the other things that the NHAS mentions is the need to address this syndemic of HIV, viral hepatitis, substance use, and mental health, and that doing so is critical to reducing new HIV and viral hepatitis infections. Harm reduction, including syringe services programs, is an important strategy to meet the health needs of people living with one or more of those conditions. I know that this is something that NASTAD and its members are thinking a lot about. I’d be interested to hear your thoughts about how you see addressing this syndemic at the federal level, and what NASTAD is doing to support that work. Beth, do you have some thoughts about ways that states can contribute, either in policy or in programs?

Beth: Stephen, why don’t you take the federal response first?

Stephen: Sure, I’m happy to do that. You’ve touched on many of the things that I think are important for us to address this syndemic. Starting with funding, we have to ensure that we are actually funding the diseases. HIV is relatively well funded, though there’s always room for additional resources, but we also need to ramp up funding for hepatitis, sexually transmitted infections, drug user health, and harm reduction programs. Those are programs that all need increased funding for us to really address the syndemic nature of the diseases. We also need to break down the silos of funding and allow for flexibilities across how those resources can be used in terms of program implementation.

Connie talked about some of the policy challenges and mentioned a big one, the needle exchange and syringe services programs. That’s one of the big policy challenges that we need to look at and address, both at the federal level and at the state and local level levels in terms of ensuring that we are using all the tools in our toolbox to address those diseases.

Another big policy area that I would suggest we need to focus on is the HIV criminalization laws because they serve as barriers and create fear in individuals about knowing their status and engaging with the healthcare system to get either prevention care or treatment services. Looking at funding policies and allowing for flexibilities across programs will allow for a holistic and multifactorial approach to syndemics.

Beth: Yeah. Thanks, Stephen. I agree with all of those items. I would add that from a state and city perspective, some of my peers in other jurisdictions have already begun this work and are trailblazing for the rest of us. We’re watching and learning from their experiences.

In Washington, we have begun reviewing our planning process and our funding efforts from a syndemic lens. We’re just at the beginning stages of this but we’re trying to innovate our planning process to include the syndemics and to include community engagement from all participants, not just HIV. Our planning in the past has been HIV care- and prevention-specific, and this time we’ll be looking at it from a broader perspective. We have less experience in it and community engagement from a state perspective continues to be a challenge. We continue to struggle to engage with our communities in a genuine way, so this is an ongoing lesson that I think we will have to expand through the syndemic approach to additional communities that we have not accessed in the past.

I think the braiding of funding is a big deal and I think that what Stephen said is very true. We have a lot of money to support HIV, and in some ways we have flexibility with those funds and I appreciate our federal partners who have found ways to give us some flexibility. However, all boats are not equal in this ocean. You really have to be able to look at some additional dollars or creative ways to use dollars to support hepatitis and STI work. I think that we are often limited in our innovation by the resource restrictions, either not enough money or money that can only be spent a certain way or on a certain population. I think that quashes our innovation a bit when we’re thinking in terms of a syndemic effort.

To me, it’s not genuine if it’s not equal. Right now, it is not equal in funding resource. So, I think we have to look at ways to raise all of those dollars in an equitable fashion so that we can actually provide a comprehensive set of services for all people across the syndemics.

I think the other struggle I have seen in the state is, how do we prepare our partners for this kind of work? Many of our partners are quite siloed in their effort, often because of how states have funded programs. So, maybe they only know how to do HIV screenings and not STI screenings. Maybe they only really focus on hepatitis or syringe services programs because we haven’t given them the resources and the training and the capacity building to do that. So, how do we prepare our current partners?

Then, how do we find new partners who have been doing some of this work, but we just haven’t engaged with them? From the state and the city perspective, that’s our challenge—finding those partners and being a good partner so that we can serve populations that we haven’t been serving well, but perhaps they have.

The other thing I would say is that even in our limited work in Washington, I have heard that this idea feels hard for people living with HIV. They feel de-prioritized and lack attention, and I think are fearful that this broader approach could limit their services. Certainly, we don’t expect that to be the case, but I think we have to be sensitive to the messaging to communities because it can be scary to think that resources could be limited to their population in a way that perhaps they haven’t before as we all try to work through the evolution of this. I think the messaging from the national level is really important because it gives credibility to what some of us are saying at the state and city level, but how we implement is going to be different, state to state and community by community.

Connie: Yeah, thanks. Funding is always an issue in the HIV space. Much of our policy advocacy every year is about funding appropriations. Some of the other things you’ve talked about, like engaging stakeholders at all levels, is really about meeting people where they are. It’s something that we like to say, but it’s both meeting them literally in the communities in which they are living, but also figuratively in terms of recognizing some of those things that you were saying about how an intervention or communications are being received.

That brings us to social determinants of health and health equity issues, which are also prominently featured in the national HIV/AIDS strategy. NASTAD has a long history of promoting health equity by addressing health disparities. I’d be interested in hearing your insight about how the Biden administration’s emphasis on equity can help advance HIV prevention, care, and treatment looking forward. What are the opportunities here in HIV and viral hepatitis in particular?

Stephen: One of the things I really appreciate about the new strategy, and I heard our new Office of National AIDS Policy Director Harold Phillips speak about this, is ensuring a whole-of-government approach. I think that’s really important, especially if that whole-of-government view uses the lens of racial equity and health equity. So, it’s ensuring that the Department of Justice is at the table as we talk about HIV criminalization. Let’s make sure that the Department of Labor is at the table as we talk about poverty as one of the major social determinants of health. Let’s make sure that the Department of Housing and Urban Development outside of Housing Opportunities for Persons With AIDS (HOPWA) is at the table as we talk about housing. Housing is probably one of the biggest challenges as a social determinant of health.

So, we want to make sure that other federal agencies are at the table and developing strategies and operationalizing the national HIV AIDS strategy from their lens, making sure that that lens has equity with it, whether it’s a racial equity, ethnic equity, or health equity lens.

We’ve talked about funding and certainly this year, the Biden administration is proposing $670 million to ending the HIV epidemic (EHE). That’s great, but we also want to make sure that that funding gets directed toward BIPOC communities. We want to make sure that academic researchers at Black-led institutions are applying the lens of equity in their research designs, and as I’ve talked about before, ensuring a diverse workforce as it is developed with those resources. As we talk about engaging communities, the third area is around making sure that the individuals that we’re engaging reflect those BIPOC communities.

The final thing I would mention is around public/private partnerships and really taking a broad view of them, that is, big public/private partnerships as well as local public/private partnerships at the community level. Who are we engaging with in terms of religious groups, philanthropic organizations, the pharmaceutical industry, healthcare systems, the public health system, health insurers, academic institutions, etc.? So, taking a broader view of public/private partnerships, and again, making sure that those partnerships come with a focus that is rooted in health equity and racial justice.

Connie: Thanks. Beth, do you have anything you’d like to add?

Beth: Well, you know I always have something to add, but Stephen covered it pretty well. I would add, let’s build some accountability. I think the inclusion of equity at the federal level speaks volumes to what we should be doing at the state level. I’m very fortunate to be in Washington State where our governor has already established an Office of Equity and where our Secretary of Health has equity as one of our agency priorities, so I feel very fortunate to be surrounded by this support.

We can say these things, but if we don’t measure and report them and hold ourselves accountable, and transparently so, I’m not sure we’re going to make a lot of movement. As I said early on, I believe that the system of care we have created on both prevention and care for HIV is very effective and very comprehensive for those people who will go to the doctor and who understand how to manage the healthcare system, who have faith and trust in that system and the resources to use that system. So, I don’t want to lose that. The folks who aren’t going to use the healthcare system, many of whom are in BIPOC communities, have got to be reached another way.

So, we need to hold level what we have and dig deeper for those populations who need a different approach. Is that a mobile approach? I hearken back to the case management days of home visits and mobile food delivery, all of those things that we did in the 90s because it’s how we got our work done. We walked away from that and into this kind of “you come to us” way of doing business. That works well for those for whom it works. It does not work for everyone, and it cannot be the only answer. We must innovate. Maybe we do need to take a lesson from our past and work with those communities to determine how best we can meet their needs. Where can we meet your needs, with whom can we meet your needs if it’s not us?

The only other piece that I would ask us to always consider is the lived experience. I believe that using the lived experience in our workforce, valuing lived experience at the state and city employment levels, perhaps over formal education, to inform our work will allow us to have a better relationship with our communities and to really tear down the parts of our system that are creating some of these access barriers. We need to figure out ways to bring folks into the system to help us tear some of that down. So, I look forward to being able to do that, but I will say that it’s very hard work and it’s not system work. It’s individual personal work and I challenge us all to take that work on personally and systematically.

Connie: I really appreciate how you brought us full circle back to the 90s when interventions were markedly different. There’s perhaps an opportunity to take some of the lessons learned and apply them today.

I want to thank our guests once again. Stephen, Beth, thank you so much for joining me today, and thank you all for tuning in to Avalere Health Essential Voice. Please stay tuned for more episodes. If you’d like to learn more, please visit us at our website www.avalere.com.