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the new thinking on hiv testing

In this e-mail exchange with three individuals at the forefront of the battle against HIV/AIDS, FRONTLINE explores the implication of the Centers for Disease Control's recommendation, expected this summer, that HIV testing be expanded in the United States.

Participants:

  • Dr. Timothy Mastro, Acting Director, Division of HIV/AIDS Prevention, Centers for Disease Control (CDC)
  • Frank Oldham, Jr., Executive Director, National Association of People With AIDS
  • Dr. Judith Auerbach, Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

FRONTLINE asked the following questions. Click on each one to read responses and follow-up comments.

  • Related Facts/Stats
  • · The CDC estimates 25 percent of the roughly 1 million Americans with HIV don't know they're infected. Worldwide, 90 percent of people infected with HIV don't know they're infected. Every day, 12,000 individuals worldwide are infected with HIV.
  • · Former President Clinton supports mandatory HIV testing in countries with high HIV rates, provided they're willing to participate and can provide antiretroviral drugs access to all.
  • · Lesotho (29 percent HIV rate) is the first country to launch a universal testing program, sponsored by the Clinton Foundation. In 2006, it will spend $100 million to buy 200 million tests, costing 49 to 65 cents each.

In coming months, the CDC is expected to recommend that every American between ages 13 and 64 be tested for HIV at least once and it should be made a standard part of medical care regardless of an individual's risk factors or HIV prevalence in the community. What's behind this decision? What are your thoughts on it and the status of HIV infections in America today?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

As you mentioned, CDC is in the process of drafting its "Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health Care Settings." The recommendations are currently in draft form and have resulted from an extensive consultative process with representatives from professional organizations, state and federal agencies, community-based organizations, people living with HIV/AIDS, health departments and academia, among others. We expect that these recommendations, which only address health care settings, will be published in the summer of 2006.

An increasing number of studies document that many HIV-infected persons access the health care system but are not tested for HIV until late in the course of their disease -- too late for them to benefit from the effective HIV treatments that are available today. CDC estimates that roughly 1 million Americans are living with HIV in the United States, but approximately one quarter of those do not know that they are infected. In a recent five-city study among men who have sex with men, 25 percent were HIV-positive, and nearly half of those infected did not know it. The proportion that were unaware of their infection was closer to two-thirds for black men, and nearly 80 percent for men aged 18-24. A separate national survey found the HIV prevalence among African Americans ages 18-39 to be over 1 percent, and nearly 4 percent among African Americans ages 40-49.

CDC data also show that persons who are tested late in the course of their HIV infection are more likely to be heterosexual, less educated, and African American or Hispanic. Making people aware of their HIV status is critical -- both for those who are infected and for prevention efforts. Knowledge of one's status allows for earlier access to effective treatment that results in a longer, healthier life span. We also know that when people learn they are infected, they take steps to protect their partners, reducing risky behavior with uninfected partners by about 68 percent.

We've seen that routine testing has already led to remarkable success in preventing mother-to-child transmission of HIV, and these changes can further that progress. Universal testing for pregnant women has long been recommended, and has helped lead to an approximately 80 percent reduction in mother-to-child HIV transmission in the United States -- from about 1,600 HIV-infected children born each year during the early 1990s to fewer than 300 in more recent years. HIV testing has become a standard part of prenatal care for pregnant women, without the need for a separate, specific consent form. We hope to build upon these successes and extend them to other adults as well.

In 2005, three separate analyses also showed that routine HIV screening in health care settings is cost effective, even in settings where only 1 in 1,000 persons is infected. Screening is a well-established public health tool that benefits both persons who are HIV infected, by facilitating their access to treatment, and their partners, who will be much less likely to become infected.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

The National Association of People with AIDS (NAPWA) has always supported the idea of Americans knowing their HIV status. We started National HIV Testing Day in 1995 to bring this issue to the forefront. We fully support CDC taking this bold step. NAPWA has always wanted to ensure that confidentiality and respect for the individual are maintained regardless of whether the testing is done in a private physician's office, a public health clinic, or a community testing site.

Minorities now constitute over 70 percent of new HIV diagnoses in the United States, according to CDC data from 2001-2004, drawn from 33 states with long-standing, name-based HIV reporting.

This data shows African Americans comprise 13 percent of the population, but account for over 51 percent of new HIV/AIDS diagnoses. Latinos only comprise 12 percent of the population surveyed but account for 18 percent of new diagnoses. African American women are 20 times more likely to become diagnosed with HIV than white women. These statistics should be alarming to every American.

We must never forget that over 500,000 African Americans and Latinos have been diagnosed with AIDS and over 250,000 have died. We must never forget that over 250,000 gay men of all ethnic backgrounds, white, African American, Latino, Asian/Pacific Islander and Native Americans have died of AIDS in America.

Dr. Judith Auerbach
Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

According to the surveillance data we have, it appears we have not made sufficient progress in stemming the number of new HIV infections in America in the past 10 years or more. Some populations, including racial and ethnic minorities, young people and women, are seeing increased infection rates. Other groups, including gay men and injecting drug users, are seeing either lower or stable rates. But what some might call a relatively stagnant rate of 40,000 [new] infections per year is 40,000 too many. The CDC estimates that as many as one-quarter of all HIV-infected individuals do not know it.

amfAR believes that increasing the number of Americans who know their HIV infection status is a good thing. The question is how can we expand testing in an environment in which infection is highly stigmatized and people with HIV face discrimination. HIV/AIDS is a disease that frightens people because it remains incurable and is associated with sensitive sexual and drug-using behaviors.

Making HIV testing a standard part of medical care might go a long way to eliminate the stigma. But this will only be true if people are given sufficient information about both the disease and the test. People need to know what it means to test positive and to test negative with respect to both treatment and prevention options and responsibilities. Also, it is essential that people are provided access to, not just information about, appropriate care and prevention services once they get their diagnosis. So the question about how this information will be provided, by whom, and when, remains a sticking point for many people in the debate about HIV testing.

Follow-Up Comment from Dr. Mastro:

I think it's important to remember that we have made substantial progress in the fight against HIV in the United States since the beginning of the epidemic, due to a combination of education and prevention efforts undertaken by CDC, state and local health departments and grass-roots community-based organizations. New infections have declined from a peak of approximately 150,000 each year in the mid-1980s to approximately 40,000 new infections annually, where it has remained stable since the early 1990s.

HIV counseling and testing for persons at high risk for HIV has long been a cornerstone of prevention strategies. CDC's strategies emphasize the use of proven public health approaches, including appropriate routine screening, identification of new cases, partner notification, and increased availability of sustained treatment and prevention services for those infected.

In CDC's proposed changes to the testing guidelines for health care settings, pre-test counseling would not be required. Providers should still provide information about HIV and HIV testing to all patients but focus counseling services on those who test positive. While counseling is still an essential part of HIV prevention, it need not be explicitly linked to HIV testing. There is now less need for extensive pre-test counseling because many more people are knowledgeable about HIV, and the evidence for prevention benefits from typical counseling for persons who test negative is inconclusive. However, CDC continues to recommend counseling together with HIV testing for high-risk persons in non-clinical settings and encourages all providers to incorporate the provision of prevention information into the routine primary care for all sexually active persons.

 

Essentially the CDC's new position is saying we can't stop the spread of AIDS without making testing widespread. True?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

Until recently, CDC has mainly targeted its prevention efforts at reducing sexual and drug-using risk behavior among persons at risk of becoming infected. Most HIV testing was also targeted, focusing on persons with behaviors that placed them at risk for HIV. The changing demographics of the HIV/AIDS epidemic in the United States since the 1980s -- increasing proportions of infected persons among women, minority races and ethnicities, and heterosexual men and women -- have eroded the ability of testing based on risk behaviors to identify many HIV-infected persons. CDC estimates that most new HIV infections in the United States are transmitted by the 25 percent of people with HIV who do not even realize that they are infected. Many people who are infected don't even suspect they might be at risk for HIV, and so they do not seek testing. We hope that by expanding access to HIV testing by making it a standard part of medical care, we will be able to more effectively reach those Americans who are unaware they are infected with HIV -- particularly because we know that once people learn they are HIV infected, they take steps to protect their partners.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

The CDC estimates that between 25 percent to 30 percent of people who are infected in this country are unaware of their status and therefore are unknowingly transmitting the virus. It is also known that once a person is aware of their status they tend to practice greater care when having sex or sharing needles, so knowledge of one's status is always a good thing. NAPWA supports any effort to encourage voluntary testing that is confidential and respectful of the individuals being tested and that appropriate counseling is available to those who need it.

Dr. Judith Auerbach
Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

Increasing HIV testing is necessary, but not sufficient, for stemming the HIV/AIDS epidemic. amfAR feels strongly that appropriate prevention and treatment information must be provided, as must access to services for people who are infected and people who aren't. Both infected and uninfected people must adhere to prevention with whatever behavioral change will keep them from acquiring or transmitting the virus. HIV-infected people will, at some point, need a treatment regimen to last the rest of their lives, and this, too, requires support from communities, health care providers, family, employers and others.

Once testing is expanding, there have been no assurances by the U.S. government that prevention and care services will be available for all people who need them. In the absence of this, it's reasonable to ask what good massive HIV testing will do.

 

Why has it taken this long to take this step? We've had drug therapies for a decade now to treat those with HIV.

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

CDC has recommended HIV testing for inpatients and outpatients in acute care hospitals since 1993. Unfortunately, many provisions that were put into place early in the epidemic, when HIV was new and unfamiliar (such as risk assessments and extensive counseling before and after HIV testing) made routine HIV testing impractical in busy health care settings with increasing demand and limitations on resources. CDC advocated making HIV testing a routine part of medical care when it announced its Advancing HIV Prevention Initiative in 2003. Demonstration projects conducted since that time have convincingly shown that expanded screening in health care settings consistently identifies many persons with undiagnosed HIV infection. Lessons learned from these demonstration projects, and from the successful screening of pregnant women, form the basis of the revised recommendations proposed for expanded screening.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

Stigma has always been one of the greatest obstacles to testing. Even today in many communities, finding out you are HIV positive can lead to discrimination and loss of the very support structures that individuals need in a time of crisis, such as their family and church. Because of this, many organizations have been hesistant to promote testing. NAPWA believes a strong anti-stigma campaign should be conducted across the country to address this issue and is working to develop one with some of our community partners.

 

How big a step is it, if this testing will remain voluntary?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

There is no doubt that voluntary HIV testing, regardless of setting, is the most effective way to engender the trust and cooperation needed to ensure that testing provides a pathway to prevention and care. CDC recommends that all HIV testing, including in health care settings, be voluntary. No persons should be tested without their knowledge and consent. Several studies have demonstrated that more rigid measures to enforce testing are more likely to drive people away, both from HIV testing and from much-needed care. Preventing the spread of HIV will always require voluntary cooperation and trust, and coercive measures to enforce testing are the surest means to destroy that trust.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

It is a huge step to bring testing into the routine health care arena. Even with testing still being voluntary, suggesting to all health care practitioners to begin offering testing as a routine part of medical practice represents a sea change of belief about HIV counseling and testing. It will reduce HIV infections and save lives.

 

Do you see a consensus growing on the issue of testing?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

While support for these approaches is by no means unanimous, consensus is growing. In the past two years, an increasing number of experts have called for expanded, routine HIV testing, and CDC efforts to jump-start this process with demonstration projects have already proven to be successful. Increasingly, health departments and hospitals have joined forces to expand HIV testing: Examples include emergency departments in New York, New Jersey, Boston and Miami, to name a few. According to the National Health Interview Survey, as of 2002, 16-18 million Americans were tested for HIV annually, and two-thirds report the source of their most recent test was in a health care setting: private doctors, HMOs, hospitals, emergency departments, and outpatient clinics.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

We do see consensus growing about this issue. Many cities and communities throughout the country are following the lead of the CDC. The cities of New York, San Francisco and Washington, DC have come out publicly in support of routine counseling and testing.

Dr. Judith Auerbach
Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

I think that consensus does not yet exist. One has to define clearly what is meant by "testing." As I said earlier, amfAR believes that having more people know their HIV status is a good thing. But there is great diversity in opinions about what kind of testing, under what circumstances, we should adopt. Some proposals at the state and federal level would eliminate pre-test counseling; others would eliminate written informed consent. Many HIV/AIDS and human rights groups oppose these changes, but some medical groups and HIV/AIDS activists support them. Some proposals are for mandatory testing in certain populations, which many people still oppose. So it is important to specify exactly what version of HIV testing is being discussed before assessing responses to it.

Follow-up Comment from Dr. Mastro:

Recently, a number of editorials in newspapers across the country have debated CDC's proposed recommendations for testing in health care settings. These have expressed some differences in opinion about exactly how testing should be implemented, but almost all have supported expanded testing as timely and necessary.

 

What about the concerns over privacy and confidentiality? Isn't AIDS still a stigmatized disease, unlike other infectious diseases?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

CDC anticipates that making testing routine will help reduce the stigma that is still associated with HIV testing. Research has also shown that more patients accept HIV testing when it is offered routinely to everyone, rather than to individuals who are singled out for testing on the basis of some perceived stigmatized risk behavior. Efforts will continue to reduce that stigma and prevent discrimination.

Privacy and confidentiality are paramount, especially when persons with HIV access health care or undertake therapy. Decades of experience have shown that health authorities can be trusted to keep information about HIV test results confidential. Due to the Health Insurance Portability and Accountability Act of 1996 (HIPAA), there are more protections on this information than ever before, as this act prohibits health care settings from using or disclosing an individual's health information, including his or her HIV status, without permission.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

NAPWA believes that regardless of whether or not testing becomes a part of routine medical care, a person's confidentiality needs to be maintained. With testing becoming more routine, protocols around confidentiality need to be even more closely observed.

Yes, in many communities being HIV positive or having AIDS is greatly stigmatized. Making a comparison to other diseases is difficult for several reasons: 1) HIV is not casually transmitted, and 2) the long term impact of HIV can have much greater adverse consequences. Sharing one's HIV status can result in violence -- especially for women. It is for this reason that NAPWA is working to develop a strong anti-stigma campaign with our community partners.

NAPWA has always supported comprehensive and balanced HIV prevention education, which is the only way to stop the spread of HIV from one person to another. Because of this, we believe the CDC must have increased funding to accomplish this.

Dr. Judith Auerbach
Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

As my colleagues have already said, routinizing testing can go a long way towards removing the fear factor and even some of the stigma associated with HIV infection. But again, privacy and confidentiality must be protected because revealing one's HIV infection still in many cases can lead to discrimination and even violence. Therefore, amfAR continues to believe that changes in HIV prevention and treatment policies must be attentive to social, cultural, and human rights concerns of both HIV-positive and HIV-negative people.

 

What will be the financial impact on the health care system? Who pays for this?

Dr. Timothy Mastro
Acting Director, Division of HIV/AIDS Prevention, CDC

While some questions remain, this guidance will be a step forward in ensuring reduced transmission and early treatment. Data suggest that screening the general population once, and those persons at higher risk more regularly, is as cost effective as other routine health screening programs, such as Pap smears for cervical cancer and mammograms for breast cancer.

As with many other services in the U.S. health care system, paying for these services will likely depend on a combination of sources, including private health insurance, Medicaid, and public funds. We hope that these revised recommendations will move us forward in the process of addressing financing for routine HIV screening in health care settings. Linking those who test positive to care and treatment is essential, and CDC will continue to work with other federal partners to help ensure that every HIV-infected person who is identified through routine testing has access to quality care, treatment and prevention services.

Frank Oldham, Jr.
Executive Director, National Association of People With AIDS

This is one of the hardest questions to answer, especially when looking at the communities that are disproportionately impacted by the disease. It is those same communities that are more likely to be uninsured, which puts a greater strain on the public health system. It is for this reason that NAPWA supports full funding for the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

It is for this reason that most Americans want "high quality" universal health care, as is the case in most industrialized nations in the world.

Dr. Judith Auerbach
Vice President, Public Policy and Program Development, amfAR, The American Foundation for AIDS Research

Our current health care system is in no way prepared to provide HIV care and treatment to all who will likely need it. HIV medications remain very expensive, and for now, people who start taking them must continue with them for the rest of their lives. Many people simply will not be able to afford this. We must also not forget that the medications don't work for everyone and they don't work forever. So many people with HIV infection eventually will progress to AIDS and will require serious medical care, including hospitalization, which is even more costly. The question of who will pay for all this has not been answered by the very governmental agencies and policymakers who are advocating for increased HIV testing and diagnosis.

Follow-up Comment from Dr. Mastro:

All persons who are HIV infected will eventually require testing and treatment, so it is not so much a question of what the impact will be on the health care system, but when. In the long run, reducing the number of new HIV infections will reduce the demand on the health care system.

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posted may 30, 2006

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