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HIV Prevention in America

Why is HIV prevention needed in America?

HIV prevention is the best way to stop people becoming ill and dying of AIDS, because although there is treatment for HIV, there is no cure. As the first nation to identify AIDS, the United States of America quickly recognised the need for effective approaches to prevention. However, American prevention strategies have not always been successful, and today there are over one million people living with HIV in the USA.

HIV prevention can take different forms, and the method chosen will usually depend on the particular group being addressed. Some of the most common prevention methods used in the USA include the distribution of condoms, the prevention of mother-to-child transmission, and to a lesser extent harm reduction among drug users. Integral to all of these programmes is education, which also features strongly as a prevention method in itself in the US.

Education is used to increase people’s understanding of HIV and the way it is transmitted, and can also dispel myths and reduce stigma. It enables people to understand the prevention tools at their disposal and make more informed choices. Education may also be used to target certain groups and inform them of the risks that are specific to them.

The concept of educating people about AIDS so they can make informed choices is central to the main government HIV prevention strategy – Advancing HIV Prevention¹. It also features strongly in the US Centers for Disease Prevention and Control (CDC) HIV Prevention Strategic Plan to 2010.² The CDC is the main organisation coordinating prevention activities in the USA.

Prevention efforts can work. Measures taken in the early years of the epidemic helped to reduce the annual incidence of HIV infection in America from more than 150,000 cases per year in the mid-1980s to approximately 40,000 cases per year since the late 1990s.³ This said, much of the reduction is thought to be due to people changing their behaviour because of fear of AIDS, and it is difficult to assess the role played by direct prevention interventions. Whatever the cause of the drop however, much more needs to be invested in prevention to ensure annual infection rates start to go down again, rather than up. In 2006, just 5 percent of the domestic HIV/AIDS budget was spent on prevention, and this included prevention research and programmes.⁴ While this is in part a reflection on the high cost of AIDS treatment in America, it also reflects a fundamental failure to recognise the necessity of preventing new infections to reduce subsequent treatment costs. In December 2007, Congress announced it would be cutting the federal AIDS prevention budget by US$ 3 million for the 2008 fiscal year, to US$ 692 million.⁵

US prevention planning, targets and goals

The United States does not have a comprehensive plan on AIDS, and prevention efforts, which may be carried out by a wide range of groups and people (such as doctors, counsellors, CDC staff or community organisations), can seem ad-hoc and unlinked. The CDC’s HIV Prevention Strategic Plan through 2010⁶ is a temporary update of the CDC’s last major strategic plan, that ran from 2001 until 2005. The plan maintains the CDC’s focus on reducing the number of new infections, increasing knowledge of HIV status and promoting linkages to care, treatment, and prevention services, but does not lay out any firm strategies and practical plans for achieving these ambitions. These are intended to be conveyed through the CDC’s various HIV prevention programs (see ‘Advancing HIV Prevention’ below for an example).

Nevertheless, the Plan does set four major goals (or ‘milestones’) to be achieved by 2010:

• Decrease by at least 10% the number of persons in the United States at high risk for acquiring or transmitting HIV infection by delivering targeted, sustained and evidence-based HIV prevention interventions.
• Through voluntary testing, increase from the current estimated 75% to 80% the proportion of HIV-infected people in the United States who know they are infected.
• Increase from the current estimated 50% to 65% the proportion of newly diagnosed HIV-infected people in the United States who are linked to appropriate prevention, care and treatment services.
• Strengthen the capacity nationwide to monitor the epidemic, develop and implement effective HIV prevention interventions and evaluate prevention programs.

The plan also increases the emphasis on prevention work with African Americans (who represent nearly half of all HIV and AIDS diagnoses) and men who have sex with men (diagnoses have risen considerably in the gay community in recent years). The CDC’s ability to achieve the goals that they have set will require a considerable scale-up and improved coordination of prevention efforts, and a large increase in funding - many of the target indicators linked to the milestones in the 2005 plan were not met.

A more comprehensive prevention plan that will take the country through to 2020 is planned, though it is not clear when this will be released.

Tools for Prevention in America

HIV prevention work cannot take place without certain ‘tools’ – things that can be used by those at risk of HIV to prevent infection. A key tool in the US HIV prevention strategy is HIV testing – by ensuring people know their status, they can take measure to protect their partners if they are HIV positive. Other key tools include condoms, harm reduction, mother-to-child transmission, and education.

Condoms

Apart from avoiding sex altogether, using condoms consistently and correctly is the most effective way of preventing HIV transmission during sexual intercourse. Despite attempts to undermine the benefit of condoms by some members of the ‘religious right’, condom use in America has increased significantly in recent years. Between 1982 and 2002, the percentage of women who had ever had a partner using the male condom rose from 52 percent to 90 percent.⁷ Similar increases have been seen among young people.^{8 9 10}

Much of this increase can be attributed to the fear caused by AIDS in the 1980s, when all sexually active Americans were instructed to use condoms during sexual intercourse to avoid HIV. However, sex education and other initiatives among young people are also thought to have contributed.¹¹

Condoms have played a particularly important role in preventing HIV among men who have sex with men. Research looking at nine separate studies of condom-promotion work among gay American men found that these interventions collectively resulted in a 26% reduction in the incidence of unprotected anal intercourse.¹² This has in turn reduced HIV incidence levels overall since the 1980s, although some studies have found that condom use is becoming less common among gay men (particularly young gay men) than it once was.¹³

Condoms in America are available through a number of sources, including drug stores, supermarkets, family planning clinics and sexual health centres. Some schools also make condoms freely available. When schools don't offer such programs, it can be difficult for young people to access condoms - a 1996 survey found that condoms were sold from behind the counter in 83% of all convenience stores, and that young females asking for help in locating or purchasing condoms encountered resistance or condemnation from clerks on 27% of occasions.¹⁴ Recently, some stores have even taken to locking condoms in glass cases to prevent theft, meaning an assistant has to be called to access them.¹⁵

It can also be difficult for people to access reliable information about condoms. Some have been taught untruths in school - for example that HIV is small enough to 'pass through' the pores in latex - in an effort to get them to abstain from sex altogether. Even the CDC has not been immune to ideological interference. In October 2002, a fact sheet on the CDC website that included information on proper condom use, condom effectiveness, and studies showing that condom education does not promote sexual activity, was replaced by a document that highlights condom failure rates and the effectiveness of abstinence.¹⁶

The impact that such a change in attitude will have remains to be seen, but many HIV and AIDS organisations are concerned that a reduced emphasis on condoms could ultimately lead to higher rates of HIV transmission¹⁷.

Harm Reduction

HIV transmission among injecting drug users (IDUs) is a serious problem in America because of the risks posed by sharing injecting equipment. In 2006, there were approximately 338,000 current heroin users in the USA, and around 3.8 million Americans over the age of twelve were thought to have used heroin at some point in their lives.¹⁸ While heroin is not the only drug that can be injected, heroin users do make up the majority of IDUs infected with HIV.

As early as 1988, studies were finding that one in four persons with AIDS in the United States had used illicit drugs intravenously¹⁹ and, while drug use may not have led to their infection, it could certainly have led to that of someone else if they shared needles. By 2005, 20% of adult AIDS diagnoses were in people who had probably been infected by using needles.²⁰

Despite the high proportion of AIDS cases still attributable to drug use, HIV incidence (i.e. the rate of new HIV infections) has declined considerably in recent years, and consequently, so has the actual number of people being diagnosed with HIV. In 2001, 7,606 people in the 33 states with confidential name-based reporting were diagnosed with HIV following injecting drug use. In 2005, this figure stood at 5,292.²¹

The reductions are principally due to an increase in the number of programmes that aim to reduce harm amongst drug users. Syringe (or ‘needle’) exchange programmes (where users can hand in their used needles in exchange for clean, sterile ones) have proved vital in stopping onward transmission of HIV.^{22 23}

Because syringe exchange programmes do not attempt to break an IDU’s powerful addiction to drugs (though harm reduction workers will often help people into detoxification programmes), they are usually considerably more successful in preventing HIV transmission than heroin substitution programmes alone. IDUs are often very aware of the risks of sharing injecting equipment, and do not do so through choice, but through a lack of alternatives. When they are able to access clean equipment, they do so.

Nevertheless, syringe exchange programmes are very controversial, and face considerable barriers in the USA. Because such programmes reduce harm to the user, rather than trying to stop illegal drug use altogether, many conservative politicians have strong objections, and claim such schemes condone and encourage drug dependency. This has never been proven (indeed the opposite is usually the case), but barriers remain.

It is illegal in the USA for any federal funding to be given to organisations that run needle exchange programmes and other harm reduction strategies (such as safe injecting centres or ‘clean’ heroin provision). Some states have drug paraphernalia laws that make it a crime to possess or distribute needles or syringes²⁴, and for a time, a number of U.S. states imposed total bans on sales of syringes in pharmacies without a prescription (although this rule has now been removed in all states except New Jersey)²⁵. Until recently, the federal government also made it illegal for public funds generated by the District of Columbia to be used for syringe exchange, despite a very large population of IDUs in the US capital. This rule has since been overturned, and funding has greatly increased.²⁶

Although many organisations have overcome legal restrictions by securing funding from local or state governments (where legal) or by running covert operations and relying on public donation, the impact of the federal funding ban and state restrictions should not be underestimated. The scale of the drug problem in the USA is vast, and many people still miss out on initiatives that could save their lives.

Mother-to-child transmission

The prevention of mother-to-child transmission (PMTCT) is one area in which the US has responded very well to the HIV epidemic. By the end of 2005, there had been a cumulative 8,460 cases of AIDS in children under 13 years that occurred because of HIV infection during pregnancy, birth or breastfeeding. However, annual numbers have fallen dramatically in recent years, and in 2005 only 67 cases of AIDS were reported in children infected by their mothers across the whole of the USA. ²⁷

With the correct treatment, the chance of a mother passing HIV to her baby can be reduced to less than 2 percent. This of course can only happen if the mother knows she is infected.

The CDC has recommended an 'opt out' approach to the testing of pregnant women since 1995. This means that an HIV test is offered to a woman as a standard prenatal test, but she has a right to refuse it if she wishes.²⁸ In some US states a baby may also be tested soon after birth if a mother has refused an HIV test or her HIV status is unknown for some other reason. Questions have been raised over this practice, with many arguing it violates a mother’s right to refuse an HIV test (as her own HIV status is revealed as well as her child’s). However, others have argued that the potential preventative benefits for the baby outweigh the harm to the mother.

Preventing children from becoming infected with HIV is obviously very important for the family of the child concerned, and for the child itself. However, on a wider scale, cases of mother-to-child transmission represent only a very small proportion of annual HIV infections. PMTCT is comparatively easy to implement as a prevention strategy, as most pregnant women will access healthcare services at some point during their pregnancy, and almost all will have a strong desire to protect their unborn children. This strongly encourages uptake of testing and acceptance of PMTCT drugs and other interventions.

Some have argued that the prominent position occupied by PMTCT in the USA’s Advancing HIV Prevention strategy (see below) is not helpful, and that greater focus should be placed on areas where prevention is failing (such as among young gay men, and the African American population). Others warn against complacency, and insist it is vital to continue focussing on the importance of PMTCT for the sake of future generations.

Further discussion of PMTCT in the USA can be found on our testing in pregnancy page.

AIDS Education

AIDS education is absolutely vital in any prevention programme. Without knowledge of what HIV is, how it is transmitted, and how transmission can be prevented, it is much harder for people to protect themselves and others from the virus. Education is also vital in correcting misconceptions and myths about HIV and reducing stigma.

Ongoing discrimination against HIV positive people, and a high number of annual infections suggest that AIDS education in the US is not as effective or as widespread as it could be. A 2006 survey for example found that 10% of Americans thought that there were drugs that could cure HIV, and 29% thought HIV could be transmitted through kissing. ²⁹

AIDS and sex education in schools

In American schools that teach about HIV and AIDS (not all schools do), AIDS education usually comes as a part of the general sex education program. Sex education in schools generally falls into one of three categories - abstinence-only, abstinence-plus or comprehensive.

• Abstinence-only education is based on the Christian belief that sex before marriage is wrong. It therefore teaches students that they must say no to sexual activity until they are married. This approach does not generally teach students about how to protect themselves from STDs and HIV, or about pregnancy and contraception, as it is assumed that young people who abstain from sex will not need this information. Sometimes, factually inaccurate or biased information is given to strengthen the abstinence-only argument.³⁰ Homosexuality and masturbation will usually not be discussed, except to say that they are wrong or unnatural. Those who favour this method of education claim that teaching young people about sex will make them want to try it - thus increasing their risk of contracting HIV, and other infections.
• Abstinence-plus education still places a firm emphasis on abstinence, but will also teach about contraception for those who do not abstain. People who champion this approach believe young people should be taught to remain sexually abstinent until marriage, but that there will always be some who won't - and that they must be provided with the information to enable them to protect themselves.
• Comprehensive sex education will also often teach about sexual abstinence, although the emphasis may be on abstaining until a person is older or ready for sex, rather than until marriage. Comprehensive education will also include other ways a young person can protect themselves from HIV transmission, STDs and unwanted pregnancy. Some schemes will encourage open conversations about sexuality, masturbation, abortion and other controversial subjects omitted or condemned in other approaches to sex education.

Although comprehensive sex education in schools is generally considered the best context in which to teach about AIDS, only around 60% of teachers report using a comprehensive (or abstinence-plus) system. About 34% teach strict abstinence-only programmes, while at least 6% teach absolutely nothing at all³¹. The exact content of what is taught can also vary considerably, and many have reported that even in schools where comprehensive education is theoretically taught, a lot of important information can be missed out or glossed over. ³²

“The closest thing I got to HIV education in school [was a] little segment in health class on what they called at the time STDs, that's about it. We didn't focus on HIV and AIDS in school, which to me is sad.” - Carl, HIV Positive Teenager, Maryland³³

In 1981 Congress passed the Family Life Act which funded educational programs to promote 'self-discipline' and emphasized sexual abstinence until marriage as the best form of protection from unwanted pregnancy and sexually transmitted diseases. While abstinence is undoubtedly very safe, for many young people it is an unrealistic or undesirable option.

In 1987, President Reagan advocated a modest federal role in AIDS education, "as long as they teach that one of the answers to it is abstinence - if you say it's not how you do it, but that you don't do it".³⁴ Ever since, the ideological message of sexual abstinence until marriage has played a key role in sex education across the USA, particularly during the presidency of George W. Bush.

In 1996, Congress made federal funding available for a five-year period to teach abstinence-only education in schools. Federal funding for any other type of sex education was not (and still is not) made available. By 2007, over $1.5 billion had been spent on abstinence-only programmes and the amount allotted to these programmes is increasing each year. The federal government spent approximately $176 million on abstinence-only education programmes in 2007 alone, nearly twenty times the amount spent in 1997. ³⁵

“The closest thing I got to HIV education in school [was a] little segment in health class on what they called at the time STDs, that's about it. We didn't focus on HIV and AIDS in school, which to me is sad.”

Carl, HIV Positive Teenager, Maryland³⁶

Abstinence-only money goes both to schools directly, and to community organisations that have active roles among youth. The funding of organisations that promote abstinence-only has proved controversial, as US laws state that federal money cannot be spent on groups that promote any one religion. In 2005, this led to the suspension of federal funding to ‘The Silver Ring Thing’, a Christian organisation that asks its members to sign a pledge to remain abstinent in front of ‘God Almighty’ so that they can receive a silver ring inscribed with a passage from the Bible.³⁷

Despite a number of studies proving that abstinence-only education is ineffective (including one ten-year study funded by the government itself)³⁸ an increase in funding has been proposed for 2008.³⁹ Much of this may go to waste however, as fourteen states have now rejected federal funding for abstinence-only education because of the lack of evidence showing it to be effective.⁴⁰

AVERT has further discussion of the pros and cons of abstinence-only and comprehensive sex education in our abstinence, sex education and HIV prevention page.

AIDS education and awareness for adults

In 2005, around 83% of HIV/AIDS diagnoses made in US states with HIV reporting were among people over the age of 25.⁴¹ Though some may have been infected before the age of 25 (diagnosis often occurs several years after infection), this figure does suggest that young people are not the only ones who need information about AIDS.

In theory, information learned about AIDS should stay with a person for life. However, adults who may have missed out on AIDS and sex education classes at school, or who have forgotten what they learned, may need further education. Some federal money is spent on providing abstinence-only education to young unmarried adults in their twenties, but as over 90% of the US population has had sex by the age of 29, the value of such work is highly questionable.⁴²

More productive education may be provided through intensive CDC-funded prevention programmes that target those most at risk of HIV infection (such as sex workers, gay men or drug users)⁴³. Such ‘comprehensive risk counseling’ aims to help people understand the risks of HIV through a series of intensive counselling sessions, and ultimately change their behaviour.

AIDS organizations that support HIV positive people also carry out education and awareness work. Some of the campaigns carried out within the gay community in the 1980s (such as those of the San Francisco AIDS Foundation) have been credited with greatly increasing condom use and contributing to bringing down HIV incidence across the country.^{44 45 46} More recently, organisations have been formed to work specifically with African Americans, who make up around half of new AIDS diagnoses, despite only comprising 12% of the overall US population.⁴⁷

More widespread education efforts that aim to generally raise awareness, reduce stigma and inform people of their risk of infection have not been attempted since the government’s “Understanding AIDS” brochure campaign in 1988.

Most adult education therefore occurs at the local or state level, and most adults will tend to receive information on AIDS from either the media or from their local community groups or churches.

AIDS education and HIV positive people

The USA has recently increased its focus on positive people as a target for HIV prevention strategies, and is currently trying to encourage as many people as possible to be tested for HIV. Testing allows those that have positive results to be educated about how to avoid infecting others, thus reducing onward transmission of HIV. For people who test negative, particularly those at an increased risk of acquiring HIV, further information can also be given to help reduce their chance of infection in the future.

Post-test counselling for both HIV positive and HIV negative people is usually performed based on detailed CDC guidelines^{48 49}. However, the extent to which the risks of HIV and other issues are discussed will vary depending on state regulations and individual circumstances (i.e. who is being counselled, who is doing the counselling, how much time is available etc.).

Routine HIV testing for everyone aged 13 – 64 in a wide range of healthcare settings has recently been introduced across the USA.⁵⁰ Further information about this strategy can be found on AVERT’s HIV testing in the USA page. This routine testing strategy has developed from a wider government plan known as Advancing HIV Prevention.

Advancing HIV Prevention

In 2001, the CDC set a goal to halve the number of people infected with HIV each year in America, from 40,000 to 20,000. The CDC originally aimed to achieve this target by the end of 2005, but by 2003 it was already clear they would not be successful. The number of new infections showed no sign of declining and there were even reasons to suspect a slight increase.

In light of this setback, in April 2003 the CDC announced a major change in its approach to HIV prevention. The new initiative would be called Advancing HIV Prevention: New Strategies for a Changing Epidemic – or AHP for short.⁵¹

AHP consisted of four strategies recommended by the CDC to state and local health departments, individual clinics, and community-based organisations that received federal support.

These were:

1. Make voluntary HIV testing a routine part of medical care
2. Implement new models for testing people for HIV outside medical settings
3. Prevent new infections by working with people diagnosed with HIV and their partners (through Partner Counseling and Referral Services – PCRS)
4. Further decrease the rate of HIV transmission from mother to child through opt-out testing for the mother and routine testing of any baby whose mother was not screened.

Previously, the CDC had aimed “its prevention efforts at persons at risk of becoming infected with HIV by providing funding for … programs aimed at reducing sexual and drug-using risk behavior”.⁵² In contrast, AHP focused mainly on people who already had HIV. A substantial amount of funding has been made available for programmes that prioritise AHP strategies, and although the strategy is not often referred to by name today, Advancing HIV Prevention continues to greatly influence approaches to HIV prevention nationwide (such as in the recent universal routine testing recommendations).

Since its launch, some experts have voiced concerns about AHP strategies, with many saying that they are motivated more by politics than science.

Some key concerns include:

• The focus on HIV positive people. Critics have warned that a concentration on HIV testing programmes might detract from other initiatives, especially community-based health education and risk reduction programmes aimed at those who do not yet have HIV. Others have said that the insistence on identifying HIV positive individuals at all costs reflects a government desire to ‘keep an eye’ on those with HIV, rather than prevent the spread of the illness. Evidence showing that HIV positive people are the best targets for prevention work has also been found to be lacking⁵³.
• The lack of focus on prevention strategies for injecting drugs users. Drug users accounted for around 20% of reported cases of AIDS diagnoses in 2007, yet AHP does not explicitly call for more syringe exchange programmes, and neither does it advocate a change in federal and state laws to improve access to sterile syringes. Many regard this as a critical weakness.
• The increased emphasis on Partner Counseling and Referral Services (PCRS). The basic principle of PCRS is to encourage recently diagnosed individuals to disclose the names and contact details of all previous partners; both those who may have infected them and those they may have infected. These partners are then contacted, are given counselling on the risks and nature of HIV, and are encouraged to get tested. Questions have been raised over the confidentiality of this process, the freedom of clients to refuse to have their partners contacted, the possibility of partner violence or rejection following notification, and the cost-effectiveness and value of the strategy in general.
• The lack of consultation. When the AHP initiative was first announced, representatives of people living with HIV voiced frustration at not being consulted. Many said that AHP was something being done “to them” rather than “with them”. There were also fears that the initiative may increase discrimination against people living with HIV, by seeming to blame them for the spread of the virus.⁵⁴ Since announcing AHP, the CDC says it has consulted with various groups on the best way to implement its strategies, including people living with HIV.⁵⁵
• The cost effectiveness. One group of researchers investigating the value of AHP compared to more traditional prevention strategies concluded that AHP would prevent around 7,300 new HIV infections annually given a $400 million budget. However, if the same money was put into a more comprehensive programme then nearly 21,000 infections could be averted.⁵⁶ According to their study, the most cost-effective strategies to prevent HIV transmission include community mobilisation efforts targeting men who have sex with men, syringe exchange programmes, mass media campaigns and free condom distribution.

 

It is difficult to assess how effective AHP programmes have been so far, as progress data have not been released since 2005, when most programmes and ‘demonstration projects’ were still in their infancy. However, the most recent statistics on the US AIDS epidemic demonstrate that in one area at least – mother-to-child transmission of HIV – prevention efforts continue to be effective.

Conclusion

With HIV incidence remaining at a relatively stable 40,000 cases per year, some have argued that prevention efforts are working. As stable as the incidence may be however, 40,000 annual infections cannot be considered a success. Despite prevention efforts among drug users and pregnant women proving successful, work amongst gay men and ethnic minority communities is still a dire necessity. Recent reports on HIV infection have indicated that annual HIV and AIDS diagnoses are beginning to creep up again, and among certain sectors of the community (particularly African Americans and young gay men) the AIDS epidemic is reaching alarming proportions. Furthermore, the barriers that remain to harm reduction amongst drugs users are still seriously hampering prevention work in many areas.

Prevention work is being conducted with many high-risk groups, but clearly, it doesn’t always work, and it is often far from universal. Moreover, more general prevention in the form of school-based education is often woefully inadequate. The issues surrounding abstinence-only education may receive the most media attention, but the fact that many students are also receiving inadequate ‘comprehensive’ education, or no education at all is an equally serious problem.

As for prevention for adults, only time will tell if the current focus on testing and prevention among HIV positive people will pay off. The US is relatively unique in making this their primary prevention strategy, so comparisons are hard to make. However, with a number of other countries now considering the adoption of the USA’s universal testing strategy, the programme’s success is going to have very important implications, not just for Americans, but for those affected by HIV across the globe.

The USA now needs to invest far more in HIV prevention, and develop a comprehensive strategic plan on AIDS that makes prevention a priority. If it does not, the AIDS epidemic will continue to expand, and thousands, if not millions more will become infected with HIV in America.

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