Elizabeth Kaplan and John Card work for Harvard Law School’s Center for Health Law and Policy Innovation (CHLPI) in its Health Law and Policy Clinic. Kaplan serves as the Director of Health Care Access and Card is a Staff Attorney. CHLPI aims to reduce health disparities and improve health outcomes for underserved communities and individuals – particularly those with chronic illnesses and disabilities. CHLPI recently hosted ‘A New Way Home: Medicaid & Reentry Symposium,’ which discussed opportunities and challenges in relation to Medicaid Reentry Section 1115 Demonstration Opportunity Waivers.
Medicaid Section 1115 Demonstration Opportunity Waivers (Section 1115 Waivers) are used for the purpose of waiving otherwise applicable Medicaid rules in narrow contexts—here, the Medicaid Inmate Exclusion Policy (MIEP). Section 1115 waivers allow states to design experimental, pilot, or demonstration projects to give eligible incarcerated individuals certain Medicaid benefits for a limited period before they reenter the community. In the content covered by this Q&A, Section 1115 waivers seek to improve the transition of incarcerated individuals back into communities by providing Medicaid coverage prior to reentry.
Q: What led you both to CHLPI, and more specifically to work focused on helping incarcerated individuals access Medicaid?
Liz: I had a background in direct legal services for people living with HIV in Washington, D.C., and in global HIV treatment access advocacy. I took some time away from HIV advocacy to gain litigation experience but was thrilled to come back to HIV-related work on the domestic policy side. It is especially exciting to work at CHLPI, where we’re thinking not only about HIV, but also related syndemics like hepatitis C and other chronic and complex conditions that disproportionately impact systemically marginalized communities.
For both HIV and hepatitis C, we have the tools to eliminate these epidemics. We know how to keep people with HIV healthy, how to cure hepatitis C, and how to stop transmissions. But if we’re serious about pursuing elimination, we have to focus on disproportionately impacted and marginalized populations. That means we need to center the needs of currently and recently incarcerated people, as well as people of color, LGBTQ+ folks, and people who use drugs. The momentum behind novel policy approaches like Medicaid access for people transitioning out of incarceration is encouraging, but we still have a long way to go to achieve health justice for these individuals, especially those living with or vulnerable to HIV and hepatitis C.
John: I was working in direct legal services at a medical legal partnership for people living with HIV. I had a special focus on people who inject drugs and were housing unstable. My prior work operated from a social determinants of health lens – we used legal advocacy in eviction cases, public benefits appeals, and criminal records sealing to reduce health inequities. During that time, I unfortunately saw a lot of overlap between my client population and people who were incarcerated. I saw how incarceration and reentry could be barriers to healthcare access and how they could potentially kneecap newer health interventions that were trying to be implemented. By the time I arrived, CHLPI was already actively participating in this space and looking into Section 1115 waivers.
I was very excited to work with Liz and expand that work. Like many of the other folks in this space, I see a lot of potential in these waivers – and I think they could be a powerful tool in decreasing health inequities that are caused by or exacerbated by incarceration. At the same time, I think we realistically have a very long road ahead of us. With any new policy, we want to be wary of the potential pitfalls that could undermine the success that we would love to see from these waivers.
Q: What issues or challenges do incarcerated individuals experience when they are attempting to access healthcare and why is it important to remove these barriers?
John: There are so many barriers that people who are either recently incarcerated or currently incarcerated face in terms of healthcare access. It’s helpful to think about the different competing priorities they may have as they reenter the community, including reuniting with family and other community members, and finding food, shelter, transportation, and hopefully income. All of that is quite a task. Additionally, these priorities are made very difficult by a multitude of collateral consequences such as bars to participation in certain programs for people who have been justice-involved. These combined factors create the perfect equation for somebody to place their own healthcare needs as secondary to these other needs — or to simply just view them as competing and decide to prioritize other needs.
It’s also helpful to think about some of the issues that the U.S. healthcare system faces outside of the reentry context, and how that might impact healthcare access for people reentering. Top of mind is trying to get an appointment with a primary care provider. I struggle to get appointments with a primary care provider on my own, and I don’t face these obstacles. We see staffing shortages as well. This can be worse depending on the locality someone is returning to. For example, rural healthcare access can be quite difficult in terms of identifying specialists or finding appropriate transportation to get to your appointments. Much of that impacts the ability of folks who are reentering to access appropriate healthcare.
In my own experience as an attorney, I often found that my clients were returning from incarceration and had to report some things that happened behind the walls – such as being diagnosed with a new condition. My clients were responsible for relaying those diagnoses to their providers on the outside. So, there is the expectation for people to act as their own advocates and relay healthcare information to get appropriate care, on top of the other competing priorities I mentioned before.
A critical aspect of all of this is that improving reentry is a matter of social justice. We know that communities of color and other marginalized communities are incarcerated at disproportionate rates, meaning that those same communities will go through the reentry process. Increasing access to healthcare and services to address health-related social needs during this vulnerable transition is one of the best tools we have for empowering communities and reducing the well-documented health disparities they experience.
Liz: One illustration of the challenges John describes are the incredibly high rates of negative health outcomes that people face in the weeks immediately following release from incarceration. Sadly, we see very high rates of emergency department visits, very high rates of overdoses, and very high rates of death immediately after people leave incarceration, due to the complex combination of unmet health and health-related social needs. That’s a driving force behind why this Administration and healthcare advocates are focused on the health needs of people who are incarcerated.
Q: The Medicaid Inmate Exclusion Policy (MIEP) has long restricted the healthcare needs of incarcerated individuals. How do Section 1115 waivers impact individuals who are living with HIV or viral hepatitis?
Liz: The MIEP has been around for decades, and it’s baked into the federal statute that creates Medicaid under the Social Security Act. It’s a statutory ban on allowing federal Medicaid funds to pay for most healthcare for incarcerated people, even if they would otherwise be eligible for Medicaid. Section 1115 waivers are an opportunity to waive this policy with respect to people who are within a period of time before they leave incarceration. Part of the theory behind waiving the MIEP during that window is to help facilitate a person’s transition from incarceration to the community by getting the person enrolled in Medicaid, thereby hopefully overcoming any administrative barriers that they may face to getting their Medicaid back when they leave. Ideally, it also allows for a warm handoff between care that they can receive while they’re still incarcerated and care that they can receive in the community once their incarceration has ended. The hope is that, by improving that transition, we can help improve health outcomes for this population.
It’s important to understand that not all Section 1115 waivers are equal, particularly with respect to coverage of HIV and hepatitis C care. The Federal Centers for Medicare and Medicaid Services (CMS) has issued guidance for state Medicaid agencies that identifies a limited set of services that must be included in the waivers. They must include medication-assisted therapy for people with substance use issues, case management, and at least 30 days of medications post-release back into the community. Beyond that, states have a lot of flexibility to determine who is eligible for these programs and what other benefits they want to include in the benefits package. Depending upon how states design the waiver, it can be designed in a way that’s very inclusive of HIV and hepatitis C care, or potentially less inclusive.
John: These waivers could be a funding source for HIV or HCV medications both before someone leaves and after – working towards continuity of care and increased medication adherence. At CHLPI, we specifically try to break down and explain to states that are interested in addressing HCV rates through these waivers that they should think about what a course of HCV treatment entails. In the best-case scenario, someone can complete an eight-to-twelve-week course of direct acting antiviral (DAA) treatment for HCV while enrolled in Medicaid under the waiver – because you potentially have a 90-day pre-release window of coverage and a 30-day post-release window. Theoretically, you could fit those eight-to-twelve weeks into 120 days if designed properly. We’re very excited about that window. It would be a great opportunity to connect people to care, and potentially cure them of HCV before they even reenter the community or shortly after.
Beyond just the coverage of HCV Direct-Acting Antivirals (DAA) therapy, there are opportunities to offer additional services like covering labs and radiology, depending on the Section 1115 waiver benefit package and how it is constructed. We’ve also discussed the possibility of covering HIV Pre-Exposure Prophylaxis (PrEP). This could be an argument for expanded eligibility groups. In some states, like Washington, all Medicaid-eligible folks can enroll under the waiver. In other states, we may have more limited eligibility. It is important to think about those nuances that might impact access to HIV prevention and treatment or HCV treatment.
Case management and health-related social need supports are a huge component of this. Folks are supposed to be receiving case management – including receiving scheduling for appointments, being connected to providers, and assessing someone’s health needs when they reenter the community. There should be coordination with community-based organizations to ensure they are getting access to those services and not just being screened for them. All those access components aid in folks being able to prioritize either HIV or HCV as something that they want to work with their providers to treat. Again, all of this is conditioned on building on that initial set of services and being intentional about how you want to incorporate HIV or HCV treatment into your Section 1115 waiver.
Q: CHLPI recently hosted ‘A New Way Home: Medicaid & Reentry Symposium.’ What were the main takeaways from this symposium, and how do they relate to the overall issue of Medicaid exclusion for incarcerated individuals?
Liz: We were excited about the interest in participation that we got from local stakeholders, community-based organizations, people with lived experiences, state Medicaid officials and CMS. There’s a lot of enthusiasm and policy momentum in this area. Currently, we have at least 23 states that have Section 1115 waiver proposals either already approved or waiting at CMS for approval. It’s great to have that enthusiasm and momentum, but to capitalize on that, we need a lot of ongoing collaboration, particularly between state Medicaid agencies and the various stakeholders within their states who are going to be interested in and impacted by this. Those stakeholders include the state carceral systems, whether that’s the state prison system or the county jails or both, but also providers in the community, people with lived experience of incarceration who are the ones impacted, and folks who work in the criminal justice and healthcare advocacy spaces.
Another takeaway relates to the importance of including people with lived experience in a meaningful way. They are the experts, and their voices must be heard. It’s important to learn from them what would be most helpful in terms of what people who are leaving incarceration need. There’s a lot of talk, including from CMS, about incorporating the voices of people with lived experience, which is a good thing, but there’s a difference between just bringing people to the table versus setting up an infrastructure where they can have a meaningful impact on the way that the program gets designed.
John: One of the groups that we’re really excited to see participating in these waiver conversations, and hopefully we see more of, is community-based organizations. Our sense, from the symposium, is that carceral folks, healthcare providers, and people who are more involved in everyday Medicaid activities have their ear to the ground about Section 1115 waivers, and they have some sense of what they are and how they operate, to varying degrees. But community-based organizations are doing a lot of the reentry work on the ground, and we really want to see them raised up as key partners in this work. To do so, there needs to be a decent amount of investment in those community-based organizations. It’s not just funneling additional funds to those organizations, but making sure that we are proactively thinking about what sort of technical assistance they might need, what sort of infrastructure they might need to build in. A big piece of that is going to be Medicaid billing. It’s something that some of these reentry services, whether they’re peer support programs or housing supports that allow people to receive housing search assistance — those organizations aren’t necessarily used to Medicaid billing. It’s a tall task to ask them to incorporate it into their operations. We want to be thinking about things like that well ahead of the curve to make sure that they’re able to leverage that expertise and experience that they already have, as well as making sure that we’re not unnecessarily leaving them out of the picture.
There will be several novel legal and policy issues that come up in this space. It’s one of the first times that we’re asking managed care organizations (MCOs), healthcare providers, carceral facilities, public health systems and community-based organizations all to be collaborating and operating in concert. One aspect that both gives me pause and makes me excited is health data privacy protections. There’s an opportunity to speak to issues regarding the expectation of patients to carry the burden of bringing their story from behind the wall to the community. Here, we can smooth some of that over. We could have communication from the carceral facility to the community-based providers, and that could be a wonderful tool for improving health outcomes. But it also brings up concerns around health privacy and the fact that you do have a particularly vulnerable population with people who are struggling with substance use disorders or other stigmatized health issues. We want to be careful about how and when that health information is used, especially when working in partnership with carceral systems, which have a duty of considering whether somebody is going to be able to successfully reintegrate into the community. We need to be careful about how we’re working with that sensitive health information.
One of the things that I’m truly most excited about with these waivers is the opportunity here for greater health justice. Historically, incarceration has not been a net positive for marginalized communities. There are disproportionate incarceration rates and disparate health outcomes for these communities as a result of that. These waivers have something called a reinvestment plan, which, at its most basic concept, would take savings from these programs and allow those savings to be funneled into other initiatives that support reducing recidivism or stopping people from being incarcerated altogether. It sounds easy and basic, but as we discussed at the symposium, that theory is going to prove very hard to accomplish in practice. So, we’re excited about the waivers, but we’re going to need to do a lot of work to make sure they’re able to achieve their full potential.
Earlier, Liz mentioned incorporating the lived experiences of people impacted in a meaningful way. Some of the tools that may aid in making that experience meaningful are as simple as making sure that people are compensated for their time, making sure we’re doing affirmative outreach to some of the reentry organizations that are led by people with lived experience, and making the power of lived experience clear.
Q: We know that states that have Medicaid expansion fare better than those that don’t when it comes to a number of health outcomes, including ensuring equitable PrEP coverage and access to HCV care. How does your work apply in states that haven’t expanded Medicaid? Do you see any persisting patterns between your work in states with Medicaid expansion versus states without Medicaid expansion?
Liz: Nationwide Medicaid expansion is the key goal. It’s central to the idea of national HIV and hepatitis C elimination. We need to find a way to help the remaining millions of uninsured people in the United States access healthcare coverage, which will allow them to access hepatitis C treatment, PrEP, and any other medical care that they may need. None of the non-expansion states have proposed Section 1115 reentry waivers yet. Waivers are often reflective of state and federal policy priorities.
As far as the value of these waivers in a non-expansion state, they would still have value because while the waivers can’t fill the Medicaid coverage gap that exists in those states, they could support people who are transitioning out of incarceration and who are eligible for Medicaid when not incarcerated. One group that I’ve thought about in particular is people who give birth while incarcerated or shortly thereafter, because there is Medicaid coverage for pregnant people, and most states have adopted 12-month continuous eligibility for people who have given birth. So, for those folks, a Section 1115 reentry waiver in a non-expansion state could be designed in a way that helps pregnant individuals access better healthcare while incarcerated.
Also, one requirement of a Medicaid waiver is that the state must incorporate an evaluation method into the waiver to see how well it works. The theory behind waiving the MIEP for 30 to 90 days prior to reentry is that the state will have an opportunity to test how well this helps improve people’s healthcare outcomes once they leave incarceration. Through that process, states will generate data about whether giving Medicaid access to people at least during the period right before they leave incarceration is actually helpful in terms of turning around some of the negative trends with respect to health outcomes right after incarceration.
John: These waivers, at their essence, are an opportunity to think about how we can improve these transitions. I’m hopeful that this is just the beginning of a larger conversation that we’re going to have about the intersection of health and incarceration. While we maybe won’t see one of these programs in a non-expansion state, it opens doors for us to think about other policy tools to address these challenges in the future. And we will get really valuable insights into what happens behind the wall in terms of healthcare. It’s going to give us additional data to work with, and hopefully all that new information is going to help us figure out how to translate those lessons learned into other settings using other policy tools.
Q: How can more states work towards requesting Section 1115 reentry waivers, so incarcerated individuals impacted by HIV and viral hepatitis can seek better treatment once they are released?
Liz: Designing a waiver is a multi-step process that is, for the most part, led by respective state Medicaid agencies. They get to decide who will be covered and what the benefit package will include. They write up the proposal, publish it for state comment, and submit it to CMS, which also holds a federal comment period that allows anyone throughout the country to comment upon the state’s proposal. After the federal comment period, CMS and the state negotiate over the terms that the state proposed, and eventually CMS issues a decision. The waiver approval dictates who will be covered, for how long, and which services will be offered. There is also a whole series of implementation steps that will translate the proposal into how it will be carried out. This is where a lot of the hard work is going to happen – and where we’re going to need a lot of collaboration between stakeholders.
For states that haven’t proposed waivers, advocates should reach out to their state Medicaid agency to discuss whether they have a proposal in the works. Some do, and they just haven’t been published yet. If not, there may be a specific reason why not, such as legislative or policy steps that need to happen in order for the state to undertake that process. Hopefully advocates can collaborate with Medicaid state officials to overcome those barriers and develop a proposal that the state is open to, and that CMS would be likely to approve.
John: Some of the asks that you can bring to Medicaid is pointing out how these are important tools for HIV and HCV. In our advocacy, we have been concerned that HIV and HCV are not being explicitly mentioned in proposals. They’re sometimes placed into larger categories of chronic conditions, but what truly defines a chronic condition? How does the state define it? In these initial conversations or even as a waiver is being developed, it’s critical that advocates bring up how this is an instrumental tool for these specific conditions.
There’s a lot of momentum behind this right now, but it’s creating a backlog at the federal level because CMS has a lot to work through in terms of these waivers. As we’ve stated, there’s a lot of discretion that goes into them, and CMS has created a floor for people to work off of, but there’s a lot of decision making that happens on top of that. In order for us to get through approvals for the waivers that have been proposed, approval of future waivers after they go through their initial three to five year approval, and to also potentially approve new states with waiver applications, CMS is going to need resources to be able to do that.
CHLPI is really excited about these waivers and educating more people about them. We have a 1115 101 webinar on our site if folks are just starting to get into this space or if they need a refresher because of how quickly its evolving – this is a great place to start. We also have a Healthcare in Motion newsletter. We’ve been releasing materials as we develop them, and we will continue to do so. We’ve also been working to put out HCV-specific resources.
