Public health and not civil liberties should now guide HIV testing policy, says JAMA commentary

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The interests of communities most affected by HIV will be best served by shifting from a civil liberties approach to HIV testing to a public health approach, according to a commentary in the October 25th edition of the Journal of the American Medical Association. The author, an expert in law and public health with positions at two of America’s leading universities, writes that advances in HIV therapy combined with the individual and public health benefits of early HIV diagnosis justify the adoption of a new, “opt-out” approach to HIV testing.

In September this year, the US Centers for Disease Control issued revised guidance on HIV testing in healthcare settings. These guidelines recommend HIV screening for all individuals aged between 13 and 64 as part of their routine medical care, irrespective of lifestyle factors, perceived risk, or local HIV prevalence rates. HIV tests can now be performed in both public and private healthcare facilities unless an individual explicitly opts-out. Furthermore, there is no requirement for patients to receive counselling before an HIV test is performed. This marks a departure from a decades-old approach to HIV testing that involved individuals receiving counselling before an HIV test, which could only be performed once written, informed consent was provided.

The civil rights approach to HIV testing originated in the early 1980s when, the author argues, the medical and social context for HIV were significantly different to those that exist today. There were few benefits for the individual from HIV testing at this time, as there were very limited treatment options and these had only a marginal impact on prognosis. HIV testing could also involve the risk of stigma and discrimination. The author argues that these factors resulted in a “civil rights” approach to HIV testing being adopted, designed to “safeguard personal autonomy and privacy and to proscribe discrimination.”

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

consent

A patient’s agreement to take a test or a treatment. In medical ethics, an adult who has mental capacity always has the right to refuse. 

cost-effective

Cost-effectiveness analyses compare the financial cost of providing health interventions with their health benefit in order to assess whether interventions provide value for money. As well as the cost of providing medical care now, analyses may take into account savings on future health spending (because a person’s health has improved) and the economic contribution a healthy person could make to society.

prognosis

The prospect of survival and/or recovery from a disease as anticipated from the usual course of that disease or indicated by the characteristics of the patient.

informed consent

A patient’s agreement to continue with a clinical trial, a treatment or a diagnostic test after having received a full written or verbal explanation of the risks, benefits and the possible alternatives. 

This approach my no longer be justified. The author stresses that potent anti-HIV therapy has both individual and public health benefits and justifies the adoption of a new, public health approach to HIV testing. Appropriate anti-HIV treatment can mean a longer, healthier life for HIV-positive individuals, and as it lowers viral load, can also reduce the infectiousness of an individual receiving therapy. In addition, the counselling that accompanies HIV testing has been shown to lead to a significant reduction in HIV risk-behaviours. The cost-effectiveness of HIV testing has been demonstrated, even in low prevalence areas.

Although the author concedes that HIV is still a stigmatised condition and that HIV-positive individuals continue to experience discrimination, he suggests that these do not occur to the same degree as in the early years of the HIV pandemic. He also argues that privacy and anti-discrimination laws now provide important legal protections for HIV-positive individuals at both a federal and state level. The author therefore believes, “in th[is] new milieu of personal therapeutic benefit, societal benefit, and fewer social risks, a public health strategy for the HIV epidemic seems warranted.”

Epidemiology is also used by the author to support the argument that a shift from a civil rights to public health approach to HIV testing is justified. He emphasises that as many as 250,000 Americans are living with undiagnosed HIV infection and that late diagnosis of HIV is widespread, and that this represents “lost opportunities for linking people with medical care, reducing infectiousness, and encouraging safer behaviour.” Universal testing would also be less stigmatising “because it does not single out vulnerable populations and applies equally to all socio-economic classes and racial groups.”

But barriers exist to the CDC’s recommendation, particularly laws in the individual US states regarding testing.

Opt-out HIV testing is part of a wider move by the CDC towards a public health approach to HIV and the author cites the CDC’s support for names-based HIV reporting and universal screening of pregnant women as evidence of this. He notes that new guidance on partner notification is due to be issued by the CDC in 2007, and he implies that this will give primacy to public health over civil rights.

Despite his overall support for opt-out testing, the author does have some reservations about CDC’s guidelines, writing that they may allow HIV testing without consent, and do not guarantee access to anti-HIV therapy for individuals who test HIV-positive. Furthermore, even in the era of potent and effective HIV therapy, the author acknowledges that receiving an HIV diagnosis can be traumatic and that patients need support after being told that they have HIV, support which the CDC guidance does not mandate.

“For vulnerable communities,” the author concludes, “it may not be enough to focus absolutely on their rights, but also on their health and collective well-being. That may be the message for the evolution toward a public health model for combating HIV/AIDS.”

References

Gostin LO. HIV screening in health care settings: public health and civil liberties in conflict?. JAMA 296: 2023 – 2026, 2006.