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HIV Care and the Affordable Care Act
A Conversation With Michael Saag, M.D., and Michael Wong, M.D.

By Myles Helfand

August 22, 2013

The Affordable Care Act: The name alone is enough to make the eyes of clinicians and patients alike glaze over. Yet the impact of the ACA (colloquially called Obamacare) has the potential to be massive when it comes to access to clinical care for HIV-infected people in the U.S. And with more ACA-related changes on the near horizon, the importance of staying informed has never been greater, particularly for health care providers who work in settings supported by Ryan White CARE Act funding.

To discuss the real-world effects of the ACA and offer guidance to HIV health care professionals, we spoke by phone with two leading experts: Michael Saag, M.D., a professor of medicine and the director of the Center for AIDS Research at the University of Alabama at Birmingham, as well as a former chair of the HIV Medicine Association; and Michael Wong, M.D., an associate professor of medicine at Harvard Medical School and the board chairman of HealthHIV, an education and advocacy organization for frontline care providers.

Inside This Discussion

HIV and the ACA: Primers

The following Web pages and documents make excellent starting points for learning more about the intersection of HIV care and the Affordable Care Act.

For Better or for Worse

Myles Helfand: Let's dive right in with a question that is probably unfairly binary, because this does not seem like the kind of issue that is easy to parse in yes-or-no terms. But from each of your perspectives -- and let's start with you, Dr. Saag -- is the Affordable Care Act ultimately a good thing for HIV patient care?

Michael Saag: I think, overall, it's a good thing. Number one, it will put, generally speaking, more people into insurance plans, be it Medicaid or some other kind of plan. And it creates more options. In essence, there's more money flowing to clinics and flowing to cover the costs of medications, so it will give some relief to the Ryan White CARE Plan -- and we'll get back to that, I'm sure, later. But the bottom line is, it's a good thing.

Myles Helfand: Dr. Wong?

Michael Wong: I have to agree with Dr. Saag completely. I think with some of the other experiments that other cities and states have been able to do to date, it's proven to be a really positive approach. I think the devil will be in the details of the transition from our current state of affairs into a full implementation of the Affordable Care Act across the country, though.

ACA Impact to Date, and the Massachusetts Example

Myles Helfand: Looking back over the past few years since the ACA was first approved, and the changes that have been implemented in that time, can either of you discuss how the ACA has already altered HIV care?

Michael Saag: You may want to take that, Michael, because you're in Boston and you guys have been experiencing something similar to it for quite a while now.

Michael Wong: For us in Massachusetts, it's not so much ACA; the state has been ahead of the health care reform game. We've had almost-complete, universal health care coverage -- either a combination of state-federal insurance or private insurance -- for over six years. And that portion of the coverage has been helpful.

But taking a step back a little bit: Even before this started, I think there were some fortunate decisions that were made, both legislatively and through our department of public health. Prior to our foray into health care reform and health care payment reform, certain conditions were recognized as being high-cost, high-profile conditions. And existing payment schemes, including safety net programs, weren't going to be quite sufficient to cover the population that was projected to exist. So, some of the things that Massachusetts did early on was to recognize HIV as a chronic condition and put it into the state Medicaid program so that it became covered under state Medicaid. This was probably a good seven or eight years before health care reform was even discussed in the state.

By doing that, the state opened the opportunity -- as Dr. Saag was referring to -- for patients, particularly those who were economically or medically disenfranchised, to actually have coverage, and have the opportunity to enter into care.


At the same time, the state started investing fully into the AIDS Drug Assistance Program. Actually, rather than calling it an ADAP, because of the inclusion of HIV into the state Medicaid program, they actually called it HDAP: the HIV Drug Assistance Program. It very quickly evolved to the point where they used that money, and leveraged that money, to help pay for insurance premiums and insurance copays. So, rather than just drugs, it actually managed the access-to-care portion, and had the medications paid for out of the plans that the patients enrolled in. By doing this, it really amplified the ability for that money to go far.

Then we moved into our equivalent of the Affordable Care Act: payment reform. And in doing this, it's been really impressive, in terms of how we've been able to keep patients in care -- actually reach out farther, engage patients and get them into care.

So I think, in the states that have been able to roll out their insurance programs, and critically looked at their payment coverage schemes and created programs that allow their insurances to be very portable -- but also looked at what they really want to include, in terms of important medical conditions with associated programs that need to be covered, and thoughtfully defined their essential health benefits -- those states are going to be moving ahead very nicely, and probably encounter relatively little pain in the process.

I think the smaller states, or those that have not been able to tackle this in any real, big-picture vision, are going to be the ones that are going to have some problems trying to implement. [Our next steps need to focus on] really trying to help bring those states along in a way that allows them to have more reasonable care across the board for their HIV-infected population, and their marginalized self-care population as a whole.

Michael Saag: If I were in charge, I would model a system after Massachusetts' experience. Oh, wait; that's what the Affordable Care Act is.

Massachusetts has been a great standard-bearer model for the actual basis of the Affordable Care Act. The success that's been there has been continued. If we can somehow depoliticize the whole implementation of the Affordable Care Act, I think everybody would be better off. That probably will never happen.

But even as recently as this week, more and more states are waking up to the benefits of having the federal government help underwrite the costs of adding these additional people onto the Medicaid rolls. That delta -- that difference between what they're currently paying for through their state coffers (in our case, it's about 20% of the federal poverty level) -- if we could get an additional 80% of people into the system, why is that a bad thing, especially with the federal government paying for it? If we can wake up and depoliticize this a little bit, we could go a long way to helping people who really need the help.

Myles Helfand: And you're saying this in the context of your practice in Alabama, where I believe the last word was that the governor did not want to expand Medicaid with the Affordable Care Act because the money wasn't there.

Michael Saag: Yeah. That was one reason. Later, this shifted to: "We didn't have the right infrastructure within Medicaid." And actually, that's a true statement. So, at the last legislature session here -- not to get too much into the weeds in Alabama, but I think it does speak to a lot of other states -- Medicaid was revamped structurally. Now, I think it is in a position, or will be in a position, to participate in the ACA. Hopefully, other states will act and, ultimately, come around.

If we think back to the implementation of Medicare in the '60s, there was probably equal resistance to implementation in several states. Ultimately, folks came around, because they saw the benefit of it and stripped away the politics more and more. Hopefully, that will happen here.

Michael Wong: I'm sitting here, silently nodding my head up and down.

Michael Saag: [Laughs.] I saw that.

Implementation in Alabama, and the Hospital Gap

Myles Helfand: Dr. Saag, have you seen, in the interim, an impact on HIV care in your area? Have you seen more people getting into care? Have you seen the quality of care improve?

Michael Saag: I can't say that I have, yet, because it's been kind of slow. The types of things that have been implemented so far are very incremental, such as increasing the coverage of people's children to age 26.

Frankly, our basic health care to HIV patients in the state of Alabama is mostly carried by the Ryan White CARE Act. There are several Part C clinics very nicely distributed across the state. We get some support from our Part B money -- that is, beyond ADAP -- to help support these clinics. There are also a few community health centers that are participating, but it's mostly the Ryan White CARE clinics. So there hasn't been a lot of change yet. Over the next two to three years, there will be some changes, and I think that will play out.

One other thing I forgot to mention: All of the patients who are seen as outpatients in the Ryan White CARE clinics, that's working OK. But when those patients need hospitalization, the Ryan White CARE Act does not cover that. And that's where Medicaid coverage will help enormously.

One of the leverage points to the states is this notion that it's expected that the states will implement the Medicaid expansion -- and, therefore, that disproportionate share payment to certain hospitals for taking care of a large number of indigents will be ratcheted down. That's part of the way that the Affordable Care Act pays for itself. For places like Birmingham -- and I'm sure there are several other hospitals around the country, especially in the Southeast, who are really dependent on disproportionate share funding to their hospitals -- that will start going away. It's been delayed because the implementation has been a little slower. But ultimately, that's the leverage point.

I can promise you that the state of Alabama cannot afford, for example, UAB Hospital to go out of business. And I'm not saying they for-sure would do so without disproportionate share, but we take care of a lot of indigent patients. The biggest difference, I think, that the Affordable Care Act brings to the table for HIV -- and for all types of care to indigent patients -- is hospitalization coverage.

Michael Wong: I couldn’t agree with Dr. Saag more on that, too. As the Chapter 224 Payment Reform bill went through a couple of years ago, some of our safety net hospitals had real concerns that they were going to go bankrupt. Some of these are big institutions that are well-known across the country.

Fortunately, with reform -- and, as he had mentioned, the indigent care population that previously were what we refer to in this state as "free care" -- they got either into the state or the federal government's insurance programs, or actually managed to get into some of these private/public partnership insurance programs. It offset a lot of the "free care" dollars; those actually ended up getting freed up. The payments to the hospitals continued. And they haven't closed.

Preparing for the Future

Myles Helfand: We've got a number of provisions in the ACA that are due to take effect over the next several months. Does that change the game?

Michael Saag: Again, for us in Alabama, I think it's not going to be terribly impactful. But let's look down the road a little further.

I think lessons can be learned from contrasting, say, Massachusetts versus California. Not to get into too much detail, but the bottom line is that Massachusetts, because they were ahead of the game, understood how to integrate the payments coming to them through the Affordable Care Act equivalent. Medicaid, etc., was nicely managed by their health department and whoever else was in charge of distribution of finance in the state. They anticipated changes, and they got ahead of them.

California has been a little bit more chaotic. Not because of anybody's particular fault; but I don't think it was carefully thought out at the beginning about how Ryan White CARE Act funding dollars would interact with people now coming into insurance coverage.

I think the take-home point from all of this is that, as each state moves forward on the HIV front, there needs to be really good coordination between the state Medicaid office and public health departments or Ryan White clinics, to smoothly transition folks from indigent status to insured status, and to make sure that Ryan White CARE Act dollars are filling gaps in coverage that otherwise won't be covered.

Michael, you may want to comment about how you guys have done that successfully in Massachusetts.

Michael Wong: For us, a lot of it has to do with the integration of the key players at the table. The medical director for our state Medicaid program speaks with the bureau chief of infectious diseases at DPH [the Department of Public Health] who oversees the Division of HIV and AIDS. The Ryan White office: It's right in CMS's [Centers for Medicare & Medicaid Services] office.

It's very nicely integrated. That started a good 10, 12 years ago: Our state legislatures, they've been working out the road map for this process. They've made a very good point of making sure that all of this was well integrated, that the appropriate councils and committees were in place before they actually tried to push through any big reform process, so things would be as seamless as possible.


How HIV Care Providers Should Prepare

Myles Helfand: As we look to the future and see large policy changes that ideally result in new patients transitioning to care, and new policies in place with how you have to arrange reimbursement and the level of care you're providing to patients: Does a provider just need to hope that there is good leadership at the top? Is it a matter of sitting there and praying that your clinic is going to be able to make the transition properly? Or are there things that a clinician -- that any care provider -- can do to prepare, to educate and to get involved?

Michael Saag: That's a great question. I would say, at a minimum, each provider needs to keep their eyes and ears open for what's happening in their state, and to continue their usual practices of screening, asking questions to patients as they come in on each visit about what their insurance status is, and adjusting based on them picking up new coverage. That's the minimum.

But for those who have time -- and I would advocate that people do commit some time to becoming involved, to make sure that their voice is heard at the table, and that each clinic knows who their state movers and shakers are with regard to making decisions -- [it's important] to get involved and to understand this, and to be brought up to speed as much as possible on not only what the Affordable Care Act is going to be doing in each staging of implementation, but understanding how it works in their state. The more that we are involved as providers in these decisions, the easier it will be for us.

Let me make this other comment: The thing I hear most among Part C Ryan White providers is the concern that Ryan White funding will go away as the Affordable Care Act is implemented. You can do the math and see that, without the Ryan White CARE Act, if everybody had Medicaid -- or Medicare, for that matter -- and you collected 100% of what you're owed, there's still going to be a tremendous shortfall to cover all the services that are provided typically in the average Ryan White clinics.

I can tell you, from multiple conversations with people at HRSA [Health Resources and Services Administration] and HHS [Department of Health and Human Services]: Ryan White is not going away. What's going to happen, though, is there's going to be a change in what it's going to be covering as more people come on to care. Medications, for example: There likely will be much less of a demand for ADAP -- or, at least, funding for ADAP. Not because they're trying to keep people from getting access to drugs, but rather, Medicaid will be covering much more of the cost of drugs.

What I'm hoping is that as some of that money is no longer allocated for Part B ADAP, it could be redirected to pay for those services that assure testing, linkage to care, retention in care, psychological services, counseling, substance use, etc. -- that all those very vital services that keep people in care continue to be made available. I don’t have a lot of concern that dollars to support that type of activity are going away.

Myles Helfand: Dr. Wong?

Michael Wong: I totally agree. As far as the point of keeping your eyes open and your ears open and becoming as involved as possible in some of the state decisions: I think that turns out to be a really key issue, and something that helps definitely lead to success. Most of our legislators actually do want to hear from their constituents, one way or another. And here in this state -- and when I was in Virginia, as well -- I found the legislators were very interested in hearing from physicians, physicians' groups and nursing groups, as long as the message that we were bringing to them was something that was really data driven, educational, clearly streamlined -- they have limited time, as well -- and with some reasonable leave-behinds.

That kind of advocacy -- that's not a politically bent advocacy -- is something that I think a lot of legislators really appreciate.

Michael Saag: There's one other thing that providers also need to do, and I think we alluded to this earlier: There is this term called "essential community provider." That applies to anyone who is a Ryan White medical provider. We are automatically eligible for that, but by law [within the ACA], we have to let people know that we are essential medical providers. That makes us eligible to participate in all types of health plans as essential community providers. That will open up the door for a lot of opportunities for all the clinics.

The second thing we need to make sure that we do is, as we're participating in these discussions -- at the state level or whatever it might be -- it's very important that we ensure the health benefits package for HIV meets the HIV standard of care. I think that was one of the things that got a little bit off balance in California's transition. This notion of integrating the HIV providers with models of care delivery; that's very important.

Michael Wong: Yup.

How Might HIV Care Change?

Myles Helfand: Is there any risk that the standard of care is is going to change as the ACA evolves, and as funding potentially shifts around in the health care community as a whole?

Michael Saag: I don't know; I can't predict the future about what the ACA is going to be specifically implementing in terms of things. But we have pretty good standards of care for HIV patients. Most people who are doing HIV care, especially through Ryan White programs, know those well. I think keeping our eye on that, and matching what those standards are to what is being covered by the Affordable Care Act, is very important.

Where we identify a gap -- where we see, well, the Affordable Care Act is covering this, but they're not covering something else -- then the Ryan White CARE Program becomes -- this term is used a lot -- the payer of last resort. And in that case, we are totally free to apply those dollars that we get through Ryan White to cover those gaps in services.

Examples might be: some home health care that isn't covered; some nutrition therapy; hospice services; palliative care; medical case management for treatment adherence. Those types of things. Or oral health care. It's not an essential health benefit of the Affordable Care Act, but they are, I think, very important standards of care for most Ryan White CARE clinics.

So we just need to keep our eye on that, and not stick our head in the sand and let this change pass us by, then find out later that something is not being covered, or there's some chaos going on around us because we didn't keep up.

Myles Helfand: Does this speak to the importance of the greater development of comprehensive care centers, as opposed to specialized care?

Michael Saag: That's a really good point. I think for most Ryan White CARE centers, you might call them "specialized care," but in fact it's pretty comprehensive. What most providers that I'm talking to want is to more or less continue the outstanding care we're able to provide now.

I think everybody, for the most part, is very proud of the level of care and services they give to their HIV patients. In the really high-functioning clinics, the proportion of patients with viral loads less than 50 copies is somewhere over 75% to 80%, sometimes 90%. Well, that's outstanding. That's what we want everywhere. That not only helps the patients, obviously; it helps with public health, as well.

So, whatever we've figured out, we need to continue to do. It's up to us to keep track of all this new terminology and all this implementation as we move forward.

Michael Wong: I think a lot of the implementation that's going to happen really has to be on the ground and specific for the communities in which the physicians or the clinics are working. I agree with what Dr. Saag said about the existing Ryan White or HIV clinics. They may be viewed as being sub-specialty care, but at the same time, they really are very comprehensive, with multidisciplinary approaches within those clinics. In some ways, they might actually be good models for some of the approaches on medical homes.

That said, even as these medical home models -- or ACOs [Accountable Care Organizations], or whatever the newer terms are that are being used today -- are developed more fully, those are all unique experiments that are being done within specific settings. They may be medical, or they may be economic. Whichever ones end up succeeding will be the ones that become the model for that area, or for that state.

Within that, we have a number of physicians who are very adept at what they need to do. Others, who are learning through programs -- good, strong educational programs that help get their initial foot on the ground, but still keep the linkages to the HIV experts and hep C experts in the field -- within their own network that will allow for the continued standard of care that we are all expecting.

Myles Helfand: In a way, this is a deeply empowering statement. Because what you're saying is that there's not going to be a one-size-fits-all approach here. There's not going to be one thing that works for everybody. And this puts the power with --

Michael Wong: When you read the ACA, or at least the newer interpretations and versions, it's pretty clear they're looking for ways to allow states and individual jurisdictions to create what works best for them.

Myles Helfand: It really speaks to the importance of self-education and self-advocacy that you both referred to earlier.

Michael Wong: Mm-hmm.

Michael Saag: Yeah, that's right.

Myles Helfand: I think we should leave it at that. Any closing thoughts from either of you? Dr. Saag?

Michael Saag: I think this is a real opportunity, just like we were saying. But what it requires is effort on the part of all of us to learn at least the basics of what the Affordable Care Act is going to provide; understand how our individual states are embracing these changes, or how they're planning to implement them -- or not -- for now; and advocate within our states for the programs that will work best for our clinics.

One thing that HIV providers have that a lot of other primary care providers don't is a [level of] organization. We have been at this for a while, and have really good outcomes through years of experience of delivering high-quality HIV care. We have a lot to bring to the table, and it's up to us to make that happen.

Myles Helfand: Dr. Wong?

Michael Wong: I couldn't have said that better.

Myles Helfand: All right, then. Thank you both deeply for this conversation.

This transcript has been edited for clarity, grammar and length.

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