ONCE it was perceived as a death sentence people would rather not know whether they had. Now, every American between 13 and 64 could be advised to take a voluntary HIV test, regardless of whether or not they are at high risk of contracting the virus, according to guidelines expected to be published by the US Centers for Disease Control (CDC).
The tests would be offered every time an individual visited a doctor, with the ultimate aim of every person taking at least one test in their lifetime. The World Health Organization is expected follow suit by recommending routine voluntary testing in any country where being HIV-positive isn’t punishable by law. Lesotho and Botswana have already introduced such schemes (see “Blazing a trail for Africa”).
The recommendations reflect a turning point in the perception of the disease, from death sentence to chronic condition that can be readily treated with drugs. However, the possibility of routine screening also raises a raft of issues about the availability of such drugs, as well as concerns about privacy and the rights of the individual versus what is in the interests of public health.
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Up to 25 per cent of the estimated 1 million HIV-positive Americans don’t realise that they have it. In many African countries this figure is closer to 90 per cent. It is statistics like these that have prompted some health workers to argue that routine testing is the only way to confront the disease.
The problem right now is that many of those diagnosed with HIV don’t find out until it is too late to begin treatment. According to CDC figures, nearly half of HIV-positive Americans only found out that they were infected with the virus in the year before they were diagnosed with AIDS. “They are therefore unable to benefit from prevention and care services that can reduce morbidity and mortality,” says a CDC spokesperson, adding that they may unwittingly contribute to the continued transmission of HIV (see “Stats from the states”).
Previous research suggests that those who don’t know they are infected are responsible for 65 per cent of all new HIV infections in the US. Meanwhile, Americans who do know that they have HIV are 50 per cent less likely to transmit the virus than those who don’t (Â鶹´«Ă˝, 12 November 2005, p 16). Such figures make the case for testing seem obvious, both for society and for individuals too, but many still have their doubts.
One of the main problems with the CDC’s guidelines is that they provide no means of ensuring that people who test positive gain access to treatment, says Michael Weinstein, president of the AIDS Healthcare Foundation, a US HIV/AIDS medical provider. A federal government programme called the AIDS Drug Assistance Programs (ADAPs) has been in place since 1990 to help bring drugs to those who can’t afford them, but Thomas Coates, director of the Program in Global Health at the University of California, Los Angeles (UCLA), says that there is still a large gap between policy and reality. “The people most likely to get HIV are the least likely to have access to healthcare,” he says. “We know that African Americans are more likely to die younger, die of AIDS, and to not get tested.”
That’s not all. A California Supreme Court decision earlier this month has raised additional concerns about privacy and the possibility of details about HIV status and a person’s sexual history becoming public. In the case, a man known as John B unknowingly infected his wife with HIV. In order to determine whether or not he was negligent in infecting her, a six-month period of his sexual history and medical records were opened up to scrutiny by the court.
If a person’s sexual history and medical records can be made public, even on a limited scale, some doctors fear that people will shy away from getting tested. According to Edwin Bayrd, associate director of the UCLA AIDS Institute, who supports the new CDC policy, the Californian ruling will make people less inclined to accept the entire testing plan. “We need to destigmatise testing,” he says. “The effect of this ruling will be to make that task harder. Just imagine all these retrospective lawsuits surrounding inadvertent infections brought by people who felt wronged.” General paranoia also lingers in the US about the existence of a large database of names of people with HIV that could be opened up to scrutiny by officials, or worse, hacked into.
However, Kenneth Mayer, director of the Brown University AIDS Programme in Providence, Rhode Island, suggests that although some of these concerns may be valid, individuals’ privacy needs to be balanced against large-scale health concerns. “Some people think it’s not good to have all of this testing information around for anyone to potentially get their hands on. On the other hand, the public health risk of not having testing is significant.”
Currently, 44 US states require that people diagnosed with HIV be reported by name to their county and state health departments. That information is then passed on to the CDC for statistical purposes, though with the names themselves removed. All name-based records are kept strictly confidential, but even this low-level exposure worries Paul Cates of the American Civil Liberties Union. “As a minimum, people should be informed,” he says. “Even with high levels of confidentiality, there have been breaches.” In 1996 the names of 4000 HIV-positive people were stolen and mailed to local newspapers around Tampa Bay, Florida, for example. Many are also concerned about health insurance premiums going up if they test positive for HIV, since companies are entitled to restrict coverage or make a decision about premiums based on any such pre-existing condition.
Since any programme of routine screening for HIV in the US will be voluntary if approved, the success or failure of such a policy will rest in the hands of the American public.
Stats from the states
- 25 per cent of the estimated 1 million Americans infected with HIV don’t realise they carry the virus.
- During 2000, 31 per cent of people who tested positive for HIV did not return to learn their test results.
- 42 per cent of people who test positive for HIV seek the test because they are already ill.
- African Americans make up 12.3 per cent of the US population, yet accounted for 51 per cent of the estimated 157,000 HIV diagnoses recorded between 2001 and 2004.
- In a study of 1363 HIV-positive men and women, 78 to 96 per cent of those who were sexually active in the previous 12 months said they used a condom with a partner they knew was HIV-negative, while 52 to 86 per cent reported using condoms with a partner of unknown HIV-status.
Source: US Centers for Disease Control
Blazing a trail for Africa
If the WHO does decide to introduce widespread routine HIV testing, especially in “high-burden” parts of Africa where more than 30 per cent of the population is infected, then Botswana is providing a useful test run.
Botswana – where one in three people has HIV – introduced universal access to antiretroviral therapy (ART) in 2002, and routine voluntary HIV testing in early 2004. But while a US analysis of Botswanans’ attitudes to routine testing has produced some grounds for optimism, it has also raised some concerns (PLoS Medicine: DOI: 10.1371/journal.pmed.0030261).
Led by Sheri Weiser of the University of California, San Francisco, the study of 1268 adults found that 68 per cent of those questioned felt they couldn’t refuse to have the test. “Some people may feel an element of coercion,” says Weiser. “So informed consent needs to be protected as these new testing policies are rolled out.” Meanwhile, almost half the respondents hadn’t heard of the routine testing programme, and 43 per cent thought that fear of the test would discourage people from visiting their doctor.
Overall, though, there was widespread support for the policy. Four-fifths of respondents were “extremely” or “very much” in favour, and 93 per cent thought it would meet the WHO’s objective of increasing access to ARTs. Sixty per cent thought that it would destigmatise HIV infection.
However, that success might not translate to other African countries, where access to ART is not readily available. “The biggest inducement to test is the availability of effective treatments,” says Lisa Power, policy director at UK-based AIDS charity the Terence Higgins Trust. “If you can’t treat it, the stress level of knowing you’ve got the virus is intolerable. I think the WHO would have an uphill struggle to push it in countries where there are no treatments available.”
In developing countries, the rationale behind routine testing is similar to that being pushed in the US (see main story). “We’re trying to avoid people being diagnosed too late,” says Lori Heiber-Girardet, a technical officer with the WHO’s HIV/AIDS programme. She says the tests would only be offered in clinical settings such as health centres and hospitals, where many patients are likely to have the virus anyway.
In high-burden countries an estimated 90 per cent of people are unaware of their HIV status. Even if they were diagnosed, often there simply wouldn’t be the drugs available to treat them. Yet there are benefits to testing even in countries where ARTs are in short supply, says Heiber-Girardet. “You can still be offered measures that prevent progression, such as prophylaxis for opportunistic infections, better nutrition, information on having safe sex, and access to support groups.”
Nonetheless, the WHO is expected to accompany its recommendations on testing with a plan for increasing access to treatment. That includes addressing not only issues of drug supply, but also the problem of personnel, says Heiber-Girardet. “The problem is a lack of healthcare professionals,” she says. “HIV is treated as very specialised disease, but there’s no reason for that. We don’t need doctors and nurses to do the testing. We can have lay volunteers do it.”
By training nurses’ assistants and volunteers to do most of the work, much of the burden associated with increased testing will be shifted off the doctors, Heiber-Girardet says, enabling them to devote their time to those who are severely ill. She stresses that routine testing would also be accompanied by a programme of counselling for those diagnosed with the disease.
