Q&A: Expanded HIV Screening: Are Public Programs Prepared to Pay? November 2010

Expanded HIV Screening: Are Public Programs Prepared to Pay?

An Interview with Erika Martin
Institute Fellow

Erika Martin

Q: What does the U.S. Centers for Disease Control and Prevention now recommend for HIV screening?

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Erika Martin is an Institute Fellow and an assistant professor at the Rockefeller College of Public Affairs & Policy. Martin and three other experts have published a paper on the budget impact of expanded HIV screening, as recommended by the U.S. Centers for Disease Control and Prevention. Their work, which appears in Value in Health, shows that public programs may not be financially prepared to cover care for all the people screened under the guidelines who test positive for HIV. Here, Martin discusses the public policy context for this research and its findings.

A: In 2006, the CDC revised its HIV screening guidelines.

Previously, the CDC emphasized testing in high-risk populations, such as at STD (sexually transmitted disease) clinics, and also among high-prevalence areas, such as Washington, D.C. There were also recommendations for separate written consent to be tested. Historically, some states have required separate written consent for HIV testing because receiving an HIV diagnosis used to be seen as a death sentence, and there was a lot of stigma around HIV testing.

A couple things changed with the 2006 guidelines.

First was the testing frequency. The CDC recommended that rather than focusing primarily on high-risk populations and high-prevalence areas, that everyone, regardless of risk, should be tested as part of routine care. Everyone should be screened at least once. High-risk populations and individuals in high-prevalence areas should have repeat annual screenings.

The second major change to the guidelines is with the consent procedures. The CDC recommended that there should no longer be a separate written consent, and that HIV prevention counseling should not be required as part of HIV testing.

Q: You’re referring to these as guidelines and recommendations. Do they have the force of mandate?

A: No. They’re just that — recommendations. Ultimately the decision on how to screen and how often to screen is between the provider and the patient.

Q: Do these recommendations have support from doctors’ groups and other health advocacy groups?

A: Since the recommendations have been made, several professional groups have endorsed them. The biggest contention, as I understand it, has to do with the consent guidelines — removing the separate written consent and moving from opt-in to opt-out testing.

Q: So under the recommendations, a person getting tested would not have to sign, “Yes, it’s OK for me to get this testing right now.” Instead, he or she would have to actively make a request to forgo testing.

A: That’s correct. This came about from the concern that, particularly in an emergency department, it was really cumbersome and administratively difficult to administer separate written consent, along with specific HIV prevention counseling, in a crowded and time-restricted setting.

Q: What was the rationale for the change in recommendation in 2006?

A: There were quite a few reasons for this. Most important is the idea that past HIV testing policies, which have focused on high-risk populations and high-prevalence areas, aren’t working as well as we’d like them to. Notably, a fifth of HIV-infected Americans are unaware of their infection. This represents about a quarter of a million people who are unaware that they’re infected.

Data have shown that about 40 percent of newly identified cases receive an AIDS diagnosis within a year of being infected. The general course of infection for someone who is untreated is about 10 years from the time of infection to development of AIDS. If two in five people who test positive develop AIDS within the next year, that indicates that people are being tested and identified very late in their infection.

Some studies have shown that targeting high-risk groups might miss a pretty significant proportion of cases. Investigators in a Chicago emergency department did a study in which they offered tests to all patients, regardless of their reported HIV risk factors. They found that half of the newly diagnosed cases would not have been classified as high-risk. This suggests that if we’re exclusively focusing on high-risk populations, we might miss a lot of cases.

There are current debates that expanded testing might be a way to reduce transmissions. Despite our best efforts to educate the public about HIV transmission and encourage people to change their behaviors, HIV transmission still occurs. Getting people identified and linked to care might reduce future transmission. First, there’s some evidence that people may change their risky behaviors if they know about their infection – so just being aware that you have HIV might reduce your likelihood of transmitting the infection to others. In addition, getting people into care and onto antiretroviral medications can reduce their viral load. Clinically, reduced viral load decreases infectivity and the likelihood that someone can transmit their infection in any given encounter.

And finally, some researchers and HIV advocates have argued that making HIV testing part of routine care may decrease the social stigma of HIV testing. Currently, HIV testing is perceived as something that’s typically done in an STD clinic, at a needle-exchange program or at another high-risk setting. Revising HIV testing procedures so that they become routine medical tests in general healthcare settings may reduce the social stigma of being tested.

Q: How is HIV care financed through public programs?

A: HIV finance is quite complicated and managed through a very fragmented system of care. Most of the costs are funded through the government programs Medicare and Medicaid, which are entitlement programs. This means that as need expands and as more people become eligible for the program, the budgets automatically expand in response to increased need. The other main payer is the Ryan White HIV/AIDS Program. Other payers include the Veterans Administration and local uncompensated care pools.

Q: Can you remind us who receives Medicare and who receives Medicaid?

A: HIV-infected individuals generally qualify for Medicaid and Medicare through low-income and disability criteria. Those who are low-income and have advanced-stage HIV would qualify for Medicaid. People qualify for Medicare generally by attaining age 65, with sufficient prior work experience, or else through documentation of a permanent disability. An individual who has been on Medicaid for an extended period of time may later transfer to Medicare funding.

There’s a catch-22 with HIV funding. Clinically, you want to get someone into care before they progress to advanced-stage disease. Antiretroviral treatment can delay the progression of HIV disease and prevent acute opportunistic infections. However, people might not be eligible for enrollment in Medicare and Medicaid until they’ve become sick enough to qualify for disability. In the early 1990s, the Ryan White HIV/AIDS Program emerged as a payer of last resort for individuals who are uninsured or underinsured. The Ryan White program specifically targets those who have not yet progressed to AIDS. In contrast to Medicare and Medicaid, it’s a discretionary grant program. This means that Congress has to budget for it annually. One of the issues with the Ryan White program is that it’s been flat-funded for the last decade.

Q: It’s been flat-funded, but demand has increased in that time?

A: Exactly.

There are some general financial issues with HIV. First, HIV care is expensive — over $20,000 a year per individual. This is rising as the cost of prescription drugs increases.

Second, HIV case management is becoming increasingly complex. HIV medications have successfully reduced morbidity and mortality. In other words, individuals taking antiretrovirals are healthier and live longer. Obviously, this is a good thing. The problem is, as people are living longer, and the annual number of new infections remains constant, an increasing number of individuals are currently living with HIV. This is a challenge for Ryan White budgets — the program is flat-funded, but demand is increasing.

Q: Is that something that the CDC took into account when considering the cost-effectiveness of its recommendations?

A: In making its recommendation, the CDC carefully considered the cost-effectiveness of expanded HIV screening. Cost effectiveness analysis focuses on efficiency and relative value. In layman’s terms, this can be thought of as a program’s “bang for the buck.” This is calculated by assessing a program’s likely long-term costs and benefits, and comparing them to other programs. A cost-effective program is one that has a good relative value, compared to other ways in which we could invest our public health resources. Cost effectiveness analyses generally take the societal perspective, which does not consider who will finance the program.

Although the CDC did an excellent job of assessing the economic evidence for expanded HIV screening, they didn’t consider the program’s budget impact. Whereas cost effectiveness analysis assesses relative value and efficiency, budget impact analysis assesses whether or not a program is actually affordable. In other words, are public payers prepared to pay for expanded HIV screening?

Both cost-effectiveness and budget impact analyses would consider that earlier case identification and linkage to care makes individuals healthier, in turn reducing their immediate chances of developing complications and requiring hospitalization costs. A cost-effectiveness analysis would consider an individual’s stream of costs and benefits over his or her lifetime, and how this compares to other health programs. It would not consider which programs will pay the costs and receive the financial benefits, and how this may change over time. In contrast, a budget impact analysis takes a payer perspective. It projects the dollar outlays for specific programs — such as Ryan White, Medicaid and private insurance — over several years. The time horizon is tailored to the appropriate budget cycle for the programs of interest. The budget impact analysis can be used to assess whether a program is affordable, and to identify which payers will be disproportionately affected. Even if a program is deemed to be “cost effective,” it is rarely cost-neutral or cost-saving. A cost-effective program may not necessarily be affordable, if payers are not prepared to finance its costs.

Q: What are the projected additional costs of this newly recommended screening, for people who are covered by the government programs that you’re talking about?

A: My colleagues and I conducted some extensive simulation analyses on the budget impact of expanded HIV screening. We calculated that for people who would be eligible for government care — excluding individuals covered by private insurance or the Veterans Administration — this policy would cost $2.7 billion over five years.

A lot of the public discussion around how should we pay for expanded HIV care — or thinking about the best ways to finance this policy — is about how to pay for the cost of testing. In other words: Who will pay for testing costs? What is the most efficient way to identify new cases? And is there enough money in HIV prevention budgets to finance more aggressive testing? We found that less than a fifth of the $2.7 billion that may be incurred over the next five years will be due to testing. Most of the cost will be for downstream care. When someone is identified as HIV-positive, they should get linked to medical care, and receive antiretroviral therapy according to clinical guidelines. These downstream care costs will represent the majority of the costs of expanded HIV screening. Most of the public discussion on expanded HIV screening has not focused on who will pay for medical care, which is the most costly component of expanded screening.

Q: Is there funding available to support this expanded testing and treatment?

A: My colleagues and I found that based on our budget projections, public programs may not be financially prepared for this policy. This is for two different reasons.

First, President Obama pledged $53 million to fund HIV prevention efforts in 2010. This is a great start. However, when we consider our findings, this may not be enough money to finance the testing costs of this policy.

The second issue is that the most significant cost increase will be to discretionary care programs — in particular, the Ryan White program and other uncompensated care pools. However, the Ryan White program budget is set annually by Congress, and as I mentioned earlier, its budget has been flat-funded for the past decade. If the program’s budget appropriation is not increased in proportion to the number of newly identified cases, individuals who have been recently identified may not be linked to care. Some states have recently implemented new waiting lists for AIDS Drug Assistance Programs, which are financed through Ryan White. If expanded HIV screening leads to a significant increase in demand for Ryan White, and the program does not receive higher federal allocations, then these wait lists may increase or else programs may be forced to take cost-reduction measures such as limiting their prescription drug options.

Q: What happens to these recommendations if public funds continue to come up short to meet the demands of the recommendations — to cover people both for the testing and the care that’s needed afterwards?

A: I don’t think the recommendations are going to change. Some recent research has suggested that testing has not increased significantly in response to the new recommendations. It will probably take a while to educate providers on the new recommendations, and it may also take time to change public perceptions of HIV testing. I doubt that potential budget shortfalls will change the guidelines themselves.

However, we think that our results are important and timely for policymakers to consider how we might want to alter or revise future budgets for programs such as Ryan White. For example, several activists have voiced concern that if we don’t have sufficient funds to treat newly identified cases, then individuals will be tested but unable to access care. Hopefully our findings can contribute to this debate.


The Nelson A. Rockefeller Institute of Government, the public policy research arm of the State University of New York, conducts fiscal and programmatic research on American state and local governments. It works closely with federal, state, and local government agencies nationally and in New York, and draws on the State University’s rich intellectual resources and on networks of public policy academic experts throughout the country.