World AIDS Day: HIV/AIDS Prevention and Treatment

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Tune into another episode of Avalere Health Essential Voice. In this segment, we welcome Carl Schmid, Executive Director at the HIV + Hepatitis Policy Institute, to discuss how HIV prevention and treatment policy influence broader health policy issues as we commemorate World AIDS Day on December 1.
“It's one thing to say that we're going to end HIV, we're going to increase testing, we're going to increase treatment, but we need to be looking at the whole person and looking at all of society to make sure it really is going to happen.” Carl Schmid, Executive Director at the HIV + Hepatitis Policy Institute


Connie Jorstad , Associate Principal, Policy

Connie Jorstad supports clients on state and federal public health programs and policy with a focus on infectious diseases and public health preparedness.

Guest Speaker
Carl Schmid , Executive Director, HIV+Hepatitis Policy Institute, Washington, D.C.
Carl Schmid has been a national policy and advocacy leader in the HIV community for over 20 years; He spent 16 years with The AIDS Institute, serving as its Deputy Executive Director; In December 2019, he formed the HIV+Hepatitis Policy Institute, which promotes quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.

This interview was originally published as a podcast. The audio is no longer available, but you can read the transcript below. For updates on our newly released content, visit our Insight Subscription page.

If you would like to watch the video version, please visit our video page.


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

I’m very happy to be joined today by Carl Schmid, who is the executive director at the HIV + Hepatitis Policy Institute. Carl is no stranger to people who work in HIV and viral hepatitis policy.  

For our audience who may not know Carl, he has been a national policy and advocacy leader in the HIV community for over 20 years and has recently served as the co- chair for the President’s Advisory Council on HIV and AIDS or PACHA.  

He brings extensive expertise in healthcare financing systems, including Medicaid and Medicare, and leads efforts to ensure implementation of the Affordable Care Act meets the needs of beneficiaries, including access to medications and preventive services.  

In today’s episode, we’re commemorating World AIDS Day. This year’s theme is equitable access in everyone’s voices. Today we will be discussing how HIV prevention and treatment policy influence broader health policy issues and vice versa.  

Carl, it’s great to have you join us for this episode of Avalere Health Essential Voice.  

Carl: Great. It’s good to be here.  

Connie: I’d like to start our conversation on federal efforts around ending the HIV epidemic in the United States. The Ending the HIV Epidemic in the US or EHE was introduced in 2019 and it continues to be a priority for the Biden and Harris administration.  

The aim is to reduce the number of HIV infections in the US by at least 90% by 2030. It’s built on four pillars. First to diagnose new infections as early as possible.  

Two, treat HIV rapidly and effectively to achieve viral suppression. Three, prevent new HIV transmissions by using proven interventions such as PrEP and syringe service programs. And fourth, respond quickly to potential HIV outbreaks.  

In the second year of program implementation. How are things going and what are some of the barriers to program implementation?  

Carl:  Yeah, well first of all, as you said, it’s a priority for the Biden administration and that’s good news because this was started in the last administration and putting forth a real increase in funding to make sure all those things occur.  

Congress has gone along with that in a bipartisan fashion, and our goal was to make sure that that was continued under the Biden administration and they have fully embraced the Ending the HIV Epidemic.  

And then I’m going to say, and then some, and we could talk about that. And so I think in Congress as again going forward in approve the funding for the next year. So I think that to have the leadership and to have the resources behind it.  

And now with the Biden administration, I think we have some right policies as well, maybe some better policies. But we did have COVID and that really did put a monkey wrench in a lot of the activities.  

You could just imagine that anyone involved in HIV, infectious disease in the delivery of healthcare and also at the planning in the state and local governments, who were involved in HIV.  

They were all called in to work on COVID, including in our government leaders like Tony Fauci and people at the CDC. So that did take away the attention needed and the resources that we needed.  

But even despite COVID, yes, I know that HIV testing went down, some linkage to care went down, new starts went down, but people adopted and there was a pickup on self- testing for HIV.  

There was a pickup on telehealth. So I was happy to see the Ryan White program come out with meeting their goal of increasing and getting people re- engaged in care. Their goal the first year was 18 ,000 and they got 19 ,000 people, and that was during COVID so I’m pretty optimistic about the future too.  

Connie: I appreciate that. As you’ve already alluded to in our audience is aware there have been some transitions in health policy during this first year of the Biden administration in terms of framing. And I’d be interested to hear from you, what are some of the most significant policy levers in the HIV prevention and treatment policy space, and how do you see shifts such as a shift to a focus on health equity and social determinants of health influencing some of those policy opportunities?  

Carl: Yeah. And those are all positive developments. So first of all, some policy changes that we’ve seen is really a focus on the Affordable Care Act, making sure people have healthcare coverage because if they don’t have coverage, how are they going to get access to testing?  

How are they going to get access to treatment and prevention services? So there’s been a real shift in the Biden administration to make sure the ACA works, and that includes Medicaid expansion as well, and then making sure people are enrolled.  

They really had all these open enrollment periods and they’re making healthcare more affordable for people, particularly the premiums. So I think that’s number one. And then the focus on the structural interventions and social determinants of health, race and equity.  

How could you not address those issues When it comes to HIV? If you look at the community’s most impacted, gay men, black and Latino people, black women, drug users, and there’s been a real focus on race.  

And I’m so glad that the new Strategic Plan that’s going to come out really takes on these issues of race and the social determinants of health, adding those in. Also, a focus on the Affordable Care Act they’ll talk about, but it is looking at racism and addressing homophobia and on transphobia and a real focus on housing.  

So I think because it takes all those elements to get it right to really… I mean, it’s one thing to say that we’re going to end HIV, we’re going to increase testing, we’re going to increase treatment, but it needs to look at the whole person and look at all of society to make sure it really is going to happen.  

Connie: And you’ve mentioned the National HIV Strategic Plan, which is to be released imminently. And the recently reconstituted Office of National AIDS policy is in the process of updating that, they’ve characterized the approaches all of society, whole of society.  

At the most recent meeting of PACHA and your last meeting as co- chair of the PACHA, there was a great interest in this approach and several members including yourself had indicated you were very interested and eager to support efforts to engage private sector.  

And you expressed a willingness to lead some of those efforts. I’d like to give you a chance here to tell us how that work is going and what sorts of opportunities there might be for the private sector audience members.  

Carl: So this really came from a request from the White House that they wanted to include the private sector in the Ending the HIV Epidemic Initiative. It’s great to have your community partners, it’s great to have the federal government, but if it’s really going to be a whole of society approach, you need the private sector as well.  

So it was their idea to add these added resources to achieve the goals of ending HIV. And so we did do a subcommittee meeting, and then we had a full committee look at this as well.  

And we wrote a letter to the Secretary of Health saying,” We would like you to facilitate a private sector component of ending HIV.” And this is not just to bring in the companies involved in HIV, but all other companies involved in healthcare, pharmacies, health insurance companies, medical providers.  

But then we want to go further. What about all the people who have large employee bases that are impacted by HIV? What about influencers like Facebook and the other high- tech companies? They should all have a role in ending HIV, the media, other nonprofit foundation.  

And I really think their involvement could help with addressing the stigma as well. It would be great to have their resources, but I think if a large company is talking about HIV, I think that’s good and it helps address the stigma that we still have, so sadly associated with HIV.  

So I think this is going to be a component of the new strategy that’s coming out, and we called for a creation of a task force. So hopefully this will get started next year. And that private sector involvement in private sector players could get involved through this creation of the task force.  

So stay tuned. I think it’s really an exciting component. There’s so many opportunities. You could look at it at the national level, but what about the local level as well? Because we have these community plans to end HIV, but I think there’s a need for the private sector to play at the local level as well.  

Connie: I appreciate hearing you say that. As I have a background in state policy in particular around the Ryan White HIV AIDS program. So hearing the importance of addressing community engagement at all definitions of community at the local and state level is important as well.  

Are there any sorts of interesting policies, proposals, or things that you see happening or being considered right now that would be in support of the Strategic Plan?  

Carl: Yeah, so I have great praise for the way the direction is going right now. We need continued resources, but the one gap that I see is really a focus and a payer for PrEP.  

We have the Ryan White program for underinsured and uninsured people living with HIV, but we don’t have a corresponding program for PrEP for people at risk of HIV. We’re doing some funding through community health centers right now for PrEP, and it’s going really well and we need to expand that.  

But we really need a greater focus on PrEP. And as you mentioned, that’s one of the three pillars of the ending, the HIV epidemic. And there’s so many exciting things happening in the field of PrEP. There’s going to be new drugs on the horizon, but we need a greater focus for both education of the community because especially in certain communities, the uptake is very low.  

And we need provider education as well. It takes a provider to prescribe PrEP and particularly in the south, and the doctors are going to have to talk about some issues that they may not talk about with their patients, but it’s really necessary.  

And then we need payers for PrEP. Of course, if you have private insurance or Medicaid or Medicare, it should be covered. But what about people who are uninsured or underinsured? So several of us are working with members of Congress right now.  

There’s some bills that have been introduced to create a national PrEP program, and we’ve been talking to the administration as well. There’s things that they can do, they could put forth more funding. But PrEP is, even though one of the drugs has been around for 10 years, I still think that we’re at the infancy of PrEP and there’s going to be a lot more excitement on the horizon.  

But we need to make sure that the federal government is there to support these programs and amplify these programs so that people, the right people can gain access to PrEP.  

Connie: Great points. So one of the broader health policy issues that seems to be on a lot of people’s minds these days is drug pricing reform. And I’d be interested in hearing from you how you see that debate impacting not just HIV and treatment policy, but people who benefit from HIV treatments and prevention.  

Carl: Well, of course, we always want lower drug prices, and it looks like Congress is trying to address that. And there’s a lot of different components to what goes into a drug. I think what matters most to patients is how much they pay for their drugs.  

And that’s what I spend a lot of my time on is how much cost sharing, how much a deductible. I mean for a family it could be up to 15, $16,000 a deductible. And we have co- insurance, and it seems that always the HIV drugs have co- insurance.  

They’re always on the highest tier. And so I try to focus on those issues. I think PBMs have a role in this as well in the rebate situation. So I think yes, Congress is starting to look at some things, but I really think there needs to be reforms in all parts of the system.  

But I think transparency, there’s efforts to increase that with the PBMs and drug pricing. But I realize that we need a healthy, I think we’ve all realized we need a healthy pharmaceutical industry.  

Look what it’s done for HIV. Look what it’s still doing for HIV and the promises ahead with long- acting agents for both prevention and treatment, and look at the cures for Hepatitis C and so many other diseases.  

But it all comes with a cost. And I just think if people put out the facts and understand things, being a little more honest and looking at the whole equation, hopefully Congress and the administration can make some progress on this issue.  

But what matters most to patients is how much they pay at the pharmacy counter.  

Connie: Yep. And I think you made a very good observation that there’s been a lot of advances in the HIV treatment space, hepatitis C treatment space in a relatively short period of time.  

I remember all of these advances, and it’s very exciting to be a part of this work today. I guess I’d give you one last opportunity to share any parting thoughts for our audience, things that you might be reflecting on as we’re approaching world AIDS today.  

Carl: Well, I think Connie, you said it well, we’ve been through a lot the last 40 years with HIV, and then we’ve seen such great progress, and there’s so much more to have in the future. But it is going to take leadership, it’s going to take a concerted effort, and it’s just not the HIV community, it’s just not the government and let the national and state local levels, but the private sector as well.  

And so I think we may have some great technology coming our way. We have some right now, but we need to make sure we get it to the people. I mean, look at hepatitis C, you mentioned we have a cure there, but there’s still so many people that don’t even know they have hepatitis and let alone get cured.  

So there’s still a lot of work to do and I look forward to working with you and others to make sure that we achieve an ending HIV.  

Connie: Great. Well, thank you again, Carl for joining me today. And thank you to all of our audience for tuning in to Avalere Health’s Essential Voice. Please stay tuned for more episodes.  

And if you’d like to learn more, visit us at our website at www.avalere. com. Thanks.  

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