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An Interview With Steve Bailey: How Virginia Kept the Pills Coming to ADAP Clients on Its Waiting List

September 24, 2012

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There's another thing that we were involved with, actually two. I think everybody agrees, accessing medications through pharmaceutical assistance programs is not the best method, because of the need to coordinate several companies at once. But certainly, when there's nothing else, it's been fortunate to have that as something to fall back on.

So two initiatives occurred over this past year, that I think will help other states that have been in our situation. One is a system that is similar to Welvista, but a little more developed, a Clinton Foundation project called HarborPath. It's a system that helps coordinate all the patient assistance programs that a client needs, through one computerized system. So a client applies once, and then HarborPath coordinates all those applications to make sure every one of them is approved. They actually have staff to make sure all those applications are approved and medications are shipped to the client or medical provider. So it's very similar to Welvista. What's nice about HarborPath is that both of these systems working together will be a great help to states in this situation. What's really nice about HarborPath is they have staff doing what we used to do, ensuring that each application is approved, and not just hanging out there, but it was beyond our resource capacity to do that. And we were involved with the development of that system, and we were able to help pilot that system for the Clinton Foundation to make sure it would be usable by both state ADAP programs and people in the community who would be interfacing with the system, such as case managers and other people in physicians' offices. So that system has started, and it's interesting, because we were involved with helping pilot the program, and we're just now reaching the point where we won't need to rely on it -- which is good for us, but it means the system will be able to help other states as well.

The other initiative we were involved with is that the National Alliance of State and Territorial AIDS Directors (NASTAD) convened a group of pharmaceutical industry partners that produce HIV medications, several states that have or have had ADAP wait lists, and members of Health and Human Services. We convened a couple of months before the International AIDS Conference to begin discussion of how we could come up with one coordinated application for all the pharmaceutical companies. So that clients and staff, that is, case managers, would not be having to coordinate so many applications to ensure a person received a complete HIV medication regimen. And, through those efforts, a form has been developed and now has been released. It's one form, and it lists all the medications available through the pharmaceutical companies that are participating in this. This one form still has to be faxed to the various companies you need, but you don't need to submit different types of documentation, you don't have to fill out ten forms as opposed to one. It's just a way to coordinate the application process, so you could help better coordinate the receipt of the medical regimen on behalf of clients. This was one of the first successful partnerships, I think, between the pharmaceutical companies, states, HHS, and NASTAD, that we all recognized that we have various goals and various ways of doing business, but we all have the same goal of trying to simplify the process of helping clients get their medications. So we feel good about this. Again, it's not ideal, because ultimately you would want anybody to be able to get medications whenever they needed in the easiest way, but it was one way to streamline the application process for multiple medications.

One question at this point, Steve: what happens to people who have been taking HIV medications for a really long time, veterans -- survivors, really -- of serial monotherapy, which means at this point that they have formidable lists of drug resistances. In some cases, there may be only one specific combination of drugs that still works. What happens if one of the elements of that combination isn't in the list?

I can tell you what Virginia did in this situation. When we developed this wait list, we analyzed if there were any medications needed for HIV treatment or opportunistic infection (OI) treatment, and were there any medications not available through pharmaceutical assistance programs. The way we approached that is, on a case by case basis, we actually provided those medications through ADAP. We felt the best we could do, we needed to sustain our program, but as a state we made a decision that if there truly was no other source, that we would prioritize that for ADAP. So we had a small number of people who were accessing medications that were not available through any other source that we were able to identify.

The other thing we did to help with that dilemma was we managed our wait list a little differently from other states. We did more of a clinical model. What a lot of states do is, first on the wait list, first off the wait list, so everyone gets a number and you enroll according to that number when there are additional resources. We took a different approach. We decided that our commitment was to help people who were more advanced in disease -- none of this is ideal, just let me say that, this was not a perfect system, but when you have limited resources, you have to make hard decisions -- we decided we would prioritize clients who were more advanced in disease, as indicated by CD4 counts, for medications. And so, as we began opening enrollment, we actually did it by CD4 groups. As we built up capacity, first we took in all clients with a CD4 count below 200. And then were were able to identify more resources and open enrollment, and then began enrolling every client already on the wait list or presenting new with a CD4 below 350. And once we stablized that, our next step was to enroll all wait list clients and new clients with CD4 counts of 500 or below. So then we were feeling pretty good, and starting to look at additional resources and revamping our systems, and now we're actually at the point where, in addition to eliminating the wait list, we're able to enroll all clients regardless of CD4 counts. That's where current treatment guidelines are, hit hard, hit early. We don't want to restrict treatment based on funding. Nobody wants to do that. So our criteria is, open to everybody regardless of CD4.

So it sounds like this has not been a good experience, having this shortage of resources, but we learned some useful things from it, and we've built important new partnerships. One final question for you: what is the current ADAP income eligibility cutoff in Virginia, and where would you like it to be?

Our current income eligibility limit is 400% of Federal poverty level (FPL) or below, and we have no CD4 count restrictions. FPL depends on family size, and we use a definition of family that includes legal spouses and those who identify as a family unit, and we incorporate that into our FPL calculation. Ideally, we would like to continue increasing our FPL for ADAP. We actually have a disparity between ADAP and other Ryan White services providing medical care. In Virginia, if you want to obtain Ryan White Part B services, you have to meet an FPL of 300% or below, or 333% if you live in northern Virginia. So the next thing we'd like to look at is eliminating that disparity and seeing how we can increase eligibility for people needing care, and at that point we want to look at incrementally increasing eligibility for people needed both medications and services.

There's one final thing I'd like to say. We're very clear that we've been working with very limited resources, and we could only do so much as a state, and what made this work -- again, not an ideal system, but it worked -- was the efforts of people living with HIV in the Commonwealth, who were very vocal and very collaborative as we started announcing these changes and talking about what would need to happen for people to obtain medications. We communicated with our community frequently, we attended many meetings -- consortium meetings, consumer meetings, community meetings, state management meetings -- to try to keep people informed as much as possible, and I know it was not easy for the community, but we do appreciate the collaboration. And the other main group that helped us was our case managers and medical providers, because they took over a lot of the burden of the administrative part of the patient assistance program application processes -- the paperwork, the tracking, the prescriptions, all of that, it's been an extreme time burden for people. But I will tell you, no one has ever complained about doing it. And what I've seen through this is a reminder of the commitment to the people of the Commonwealth, both by the clients and by those receiving treatment, to do whatever we need to do together to make sure people get the medications and care that they need. So, as you said, it's been a really hard thing, and painful for everybody to go through something like this, but it really brought out the strength of our community, and it brought out the fact that we are going to continue to work together as a community, no matter what challenges face us in the future.

Steve, thank you so much!

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This article was provided by National Association of People With AIDS. It is a part of the publication Positive Voice.
See Also
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More News on ADAP Funding and Activism

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