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ICAAC 2006; San Francisco, Calif.; September 27-30, 2006

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The Body Covers: The 46th Interscience Conference on Antimicrobial Agents and Chemotherapy
U.S. HIV Policy Update With Gregory Smiley

September 30, 2006

Listen (8.3MB MP3, 24 min.)
I'm here with Greg Smiley, the director of public policy with the American Academy of HIV Medicine, arguably the largest group of HIV specialists. Greg is going to tell us a little bit about what he does in his job. Can you tell me about the Ryan White CARE [Comprehensive AIDS Resources Emergency] Act, for instance?

Gregory Smiley, American Academy of HIV Medicine, Washington, DC
Gregory Smiley, American Academy of HIV Medicine, Washington, DC
Sure. The Ryan White CARE Act is the largest discretionary funded source of public care for people with HIV and AIDS in the United States. What that means is that people who don't qualify for other public assistance, like Medicare and Medicaid, can rely on Ryan White CARE Act services for their treatment, supportive health services and other ancillary service needs that supplement their care, and that they don't otherwise receive through public or private insurance. The Ryan White CARE Act is funded with about $2 billion a year right now, which is quite a long way away from when it was originally enacted in 1990. The law was passed overwhelmingly back in 1990 by both Democrats and Republicans to help people that weren't otherwise accessing HIV care. Because of the exponential expansions in available treatments and the number of people with HIV in this country, the program has also really exponentially grown since 1990. It's certainly an anchor of care for people in this country.

Medicare and Medicaid may be slightly larger programs for people with HIV, but because the CARE Act is funded annually by Congress and has to be written by Congress every five years, it gets a lot more attention than the Medicare and Medicaid programs do. It ends up being much more in the public's consciousness, much more in the minds and hearts of advocates, of physicians, and patients. They see the program being changed and being funded every so often, as opposed to the entitlement programs of Medicare and Medicaid.

The Act was supposed to be reenacted on September 30, 2005, I understand, and it still has not been reenacted. What's taken so long?

Well, Congress certainly is not known for getting things done on time. They tend to be procrastinators on a number of different issues, certainly not just on the Ryan White CARE Act. The Ryan White CARE Act has certain authorization periods, just like other laws do. Anything that's funded by the government has to be authorized to be funded. Even other agencies that we are much more familiar with, such as the CDC [US Centers for Disease Control and Prevention] and the NIH [US National Institutes of Health], have to be written into law by Congress. Congress likes to be significantly hands-on or in touch with how agencies are run. So, when they set up agencies they authorize them for a finite period of time. The Ryan White CARE Act is no exception.

Now, Congress has two functions. Not only do they write the laws, but then they fund those programs that are authorized. So, Congress' two aims, authorization and appropriation, are both extremely important, but they are also different. The NIH, for example, hasn't been reauthorized since 1993. Obviously, it's a very popular program and it's not in any danger of going anywhere or being not funded from year to year. So, although technically it's illegal or not appropriate, Congress certainly does fund these programs year after year without any worries that they are going to go away.

The last time the CARE Act was reauthorized was in 2000 [when it was reauthorized] for another five year period. The fiscal year for the federal government begins in October, so the law technically expired in September of 2005. But, like I said, it's in no danger of going anywhere or not being funded. Congress has been funding it annually with their appropriation bills. The law always has -- except for in 1990 when it was passed -- it always has a certain level of interest among members of Congress in terms of how they want to have it redone. I think as the years have gone by and the partisanship in Washington has increased and as the HIV disease prevalence has increased and the funding levels haven't gone at the same rate as HIV prevalence has gone, people are starting to be much more concerned about how the law is written and how it's been funded. It's become a little more of an interest for folks because these services are life saving and they really do have an impact on people. People become much more invested over time. Because the funding hasn't necessarily matched the needs, it has become much more of a political firefall.

How involved is the Academy in lobbying or working to get this reenactment? How much time have you spent on it and do you spend on it?

Well, the Academy is an organization that's only been around for about six years. For the first two or three years of its existence it didn't have any kind of public policy arm to it. Just to clarify what the Academy is -- It's an organization of about 2,000 medical providers throughout the country who credential as HIV specialists. They are about 30 percent infectious disease docs. Many are internal medicine docs. But we also have family practitioners, general practitioners, [and] nurse practitioners as well, because HIV care isn't housed under any one subspecialty of medicine. You could be any different type of medical provider and specialize in HIV care. What the Academy does is bind those people together through regular education and credentialing programs to keep medical providers up-to-date. What they found in 2003 was they really wanted to get much more involved in advocating on behalf of their patients. So, they hired me to design and create and run a public policy program. Certainly, this is one of the most popular programs we offer and share. So, the Ryan White CARE Act has certainly been one of the top priorities of my work over the last few years. Certainly, there's been other things I've focused on, such as the Medicare Part D prescription drug benefit, the cuts that Medicaid has been facing both on the federal and state level, the NIH, but Ryan White has tended to be the anchor of our public policy program.

We co-authored a position paper, a white paper, on what our feelings were on the Ryan White CARE Act reauthorization, with the HIV Medicine Association. The HIV Medicine Association is another organization of HIV specialists, specifically those physicians that specialize in infectious disease. But the two organizations work arm and arm when it comes to many public policy issues, and the Ryan White Act is certainly one, we are quite proud to have worked together on.

We came out with a white paper that talked about the prioritization of medical services, which we fairly broadly defined to encompass much more than the conventional wisdom on what medical care is. It's certainly much more than doctor's visits, lab tests and prescriptions. We recognized that there are other things that make up what health care is for people. We advocated for the addition of substance abuse services, mental health services, a lot of other arms of health care services, to be included in the prioritization of medical care when Congress looked to reauthorize the CARE Act.

We also made suggestions on the AIDS Drug Assistance Program -- that all states adhere to a certain level of basic medications that they include on their formularies. We asked the federal government to guarantee that for every individual in states that were 300 percent of the federal poverty level or below. Prescription drug availability really does vary from state to state. Some states barely cover much more than the antiretrovirals that we know and depend on. Other states, such as New Jersey, Massachusetts and New York, do a great job of augmenting those basic formularies that people depend on. So, what we are hoping to do is make sure that every individual that doesn't have access to medications, has access to a clinical standard of care, both under the AIDS Drug Assistance Program and through the other arms of the Ryan White CARE Act. So, we have advocated for the prioritization of medical services, which we broadly defined.

Actually, Congress listened to what we had to say about those medical services and came out with a definition of medical services that pretty closely mirrors the language that the HIV Medicine Association and the Academy came out with. They also endorsed a minimum formulary. They didn't necessarily guarantee it the way that we would have liked to, with appropriation, but they did recognize that folks around the country need a certain clinical standard of care under drugs.

We also were quite supportive of bringing in new language that would help bring in new HIV medical providers. We would like to use the Ryan White CARE Act to demonstrate the fact that people aren't going into HIV medicine like they used to. Without taking any dollars [away from other] programs, we did want the Ryan White CARE Act to look at new ways that we could bring new folks into care.

So, we've been quite active in working with Congress, with the administration, with the White House on revising the CARE Act to the best that they could. I think that, like any other advocacy organization, we won some battles, we lost some battles. The patients concerns have always been in the forefront of the physicians' mind, and they've been excited to work on it. It's been exciting to work on their behalf.

Did you have a white coat day? You brought a lot of physicians to Washington?

We did. It's been interesting. In the 25 years of the epidemic, the level of advocacy among medical providers has always been fairly -- I don't want to say weak, but it certainly hasn't matched the levels of what the patients and the community groups have done. It's nice to see medical providers advocating on behalf of their patients and becoming more involved in state advocacy and federal advocacy and so forth. In 2003 we brought in a number of our members to lobby Capitol Hill and wear their white coats and storm the capital like Mr. Smith -- or Dr. Smith -- Goes to Washington. We've done that three years in a row now and we certainly do enjoy it now. It's one of our signature events that is very beneficial both from our members' standpoint and to those on the hill. Members of Congress have been quite appreciative of that fact that that the stakeholder community of the docs has been coming in and voicing their opinion. It's obviously been very rewarding for the doctors themselves to see advocacy in motion and to see some results from it.

So, what's the status of the CARE Act today? I understand that certain states, like California, New York, and New Jersey, are very worried that they are going to lose money because of the way that it's been changed. Could you tell us a little bit about that -- where we are today and whether physicians or patients need to worry?

Well, the biggest problem always comes down to money. Unfortunately, in the last few years, [the way that] members of Congress have looked at appropriating money for programs hasn't always been a rosy picture. The assumption -- or not even the assumption, it's a stated fact -- is that health programs and other discretionarily funded programs really aren't going to see major increases any time soon. With that being the framework that we are working under, there are, unfortunately, going to be winners and losers. It's not how we would like to shape the debate; it's just the reality of the situation, which is unfortunate. It's difficult to recognize that, but in some ways it has to be dealt with and accepted. The unfortunate fact is that under this bill, or under law, either way, there are going to be winners and losers -- with the Ryan White CARE Act being reauthorized as it's currently drafted or without it being reauthorized and currently law being kept in place. If you would like me to go a little bit into how that works I would be happy to do that.

Yes, please.

When the CARE Act was last reauthorized in 2000, funding for states and for cities was based on a weighted band, an average of AIDS cases over the past 10 years. How that was done might get a little technical and complicated, but suffice it to say that it was based just on AIDS cases.

[Lawmakers] recognized that HIV is not just AIDS and that people need to get care earlier on in their infection. So, they said, we want to start documenting where HIV cases are as well as AIDS cases because the funding should recognize that and follow the epidemic accordingly.

Let me interrupt. I think we should clarify that when you say AIDS rates (and not HIV rates), this reflects the older population of infected people and not the newer people. Don't those statistics reflect infections 10 years ago rather than today?

Yes. For example, in 2002 to find out how much they would give you they would say that for the cases that were diagnosed in 1992, we'll give you $10 for them and for those diagnosed in 1993 we'll give you $15 and so on. For those cases that were diagnoses last year we'll give you $90 per case. [The formula] was weighting the cases based on your most recent infections but at the same time was counting those cases that were diagnosed eight, nine, 10 years ago in your formula for your funding. This was commonly known as "counting dead people" because people diagnosed in 1992 were still being counted in their formulas. A lot of those folks had died, but [states were] still getting the money for them.

Congress said, let's count HIV as well as AIDS and have money disbursed based on HIV prevalence and AIDS prevalence. That was to take place by October 1. They said they would only count those HIV cases if the CDC recognized them as being truly identified HIV cases, meaning the cases were reported to the CDC in a way that the CDC could accept the information. This is commonly known as names-based versus code-based reporting. When this law came into effect in 2000, a lot of the states throughout the country that had code-based reporting started to recognize that they were going to lose out come October 1 unless they started to switch over to a names-based system. California is the last big state known to have switched over from code-based reporting to name-based reporting just earlier this year. There still are 11 or 12 states, including the District of Columbia, that do not diagnose and report cases of HIV infections by a patient name and report that to the federal government.

So, on October 1, those formulas for the next fiscal year, which again, begins on October 1, will be based on what the CDC has in their database for HIV cases and AIDS cases. If you don't have HIV cases in the system that they recognize, you're not going to get the dollars for [them].

Now, there are protections within the way the CARE Act is funded. It's a very complicated program. It's funded first, on the front end, through your "formula allocation," and then later, at the back end, later in the year, through what's known as your "supplemental award." The supplemental award is there to protect those localities that may not have gotten everything that they needed. So, those states that don't have HIV case reporting in place by October 1, won't get a very strong formula award in the front-end of the fiscal cycle but, in theory, will get the priority of the supplemental dollars that are awarded later in the year because they will see that they haven't gotten significantly less money and they will need to be "made whole," as Congress calls it. In order to make those grantees "whole" those supplemental dollars will be prioritized to those states that lose out.

Under the draft bill of the reauthorized Care Act, states that have newer epidemics, states such as Tennessee, Alabama, perhaps, and Oklahoma and so forth would get more money up-front to recognize that HIV has grown in those locales. Unfortunately, in a fairly flat- funded scenario those dollars have to come from somewhere. States like New York, New Jersey, California and other places may lose out. Again, there are supplemental dollars, which in theory makes those states whole. So, there are winners and losers whichever way you go.

We wrote a letter to Congress just last week restating what we feel. This isn't the best bill in the world. The Democrats and the Republicans in both the House and the Senate have all been working with one another to make a compromise. In some senses it's a very delicate house of cards, that has a lot of things that nobody likes, that has all these different parts trying to please different constituency groups. It's a very complicated bill. But because it does prioritize care that people need, because it does more evenly distribute funds throughout the country, and because it does involve a $70 million increase under the Title II awards for the states, it's better than current law. It's not head and shoulders above current law, but at the end of the day if your choice is between current law [and the new version], this new bill is better. We are in support of it. It's kind of putting your arms around a pig and giving it a kiss. You don't love it, but you've got to do it.

Does this mean that patients or physicians living in New York or California or New Jersey, are going to see something happen if this bill is passed? Is something concrete going to happen within a year? Will services change? Will patients suddenly lose the ability to get transportation to their physicians?

The devil is always in the details. There is the possibility that services could be interrupted. There won't be anything immediate. There won't be anything so certain that it would go from day to night. There's nothing that people have to be panicked about, or worried about, by any stretch of the imagination.

In the beltway there's a term, "to hold-harmless." What that means is that from year to year states should be held harmless from drastic funding reductions. If you were to base your funding on your HIV incidence -- this is completely hypothetical -- if I were to give you a million dollars for every case you had, if one year you had fifty cases and another year you had ten, you would see someone's funding go up and down like a zig-zag. That's not any way to fund a clinic, to retain state and so forth. Held-harmless provisions are there to keep the access to care provision of care relatively stable, and I think we'll see that. Whether or not this bill is passed because the held-harmless language keeps programs fairly intact and stable, it will be a while before there's any major reduction in services.

The hope is that adjustments will be made, either by the state legislatures, by private organizations, by other community-based organizations to contribute more dollars, to supplement these services, so that hopefully no one will go without. That is the hope.

Well, thank you very much, Greg.

See Also
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Please note: Knowledge about HIV changes rapidly. Note the date of this summary's publication, and before treating patients or employing any therapies described in these materials, verify all information independently. If you are a patient, please consult a doctor or other medical professional before acting on any of the information presented in this summary. For a complete listing of our most recent conference coverage, click here.

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