In the monthly "Ethical Inquiry" series, we examine ethical questions, highlighting a broad array of opinion from journalism, academia, and advocacy organizations. Our intent is to illuminate and explore the complexity of some of the most vexing ethical questions of our time.
Ethical Inquiry: June 2010
Normalization of Testing for HIV: Should Everyone Be Tested?
What Would We Gain? What Would We Lose?
There are approximately 33 million people with HIV in the world, 14 million of them in immediate need of treatment. It is estimated that for every 100 people who begin treatment, there are 250 other infected people who are not receiving treatment. Without change, the major epidemic will still not have peaked by 2031.
June 27th, 2010 is National HIV Testing Day. In this installment of "Ethical Inquiry" we discuss the push to make HIV testing universal (starting at age 13), or “normalized.” Traditionally HIV testing has been given a special status among medical screenings, a phenomenon referred to as “exceptionalism.” People receive extra counseling and cautions, are required to give written consent (versus the more typical verbal consent, or simply being informed of the tests regularly conducted for their health) and allowed to refuse testing despite clear medical indications of full-blown AIDS.
This in turn has impacted the level of knowledge of the incidence and prevalence of HIV/AIDS (i.e. the surveillance data essential for infectious disease control activities by the public sector). The fact that the global HIV/AIDS pandemic has not yet peaked calls into question the policy of exceptionalism and lends support for the introduction of universal HIV testing. At least in the United States there seems to be an emerging consensus in support of universal HIV testing, but AIDS advocates continue to express concern about ongoing stigma and rights violations of persons with HIV/AIDS.
Before treatment was available, and even now, many people suffered ostracism from family, friends and colleagues after learning they were HIV-positive. They also suffered loss of jobs, health insurance and housing in some cases.
To deal with this stigma, legislation was passed that required written consent for testing, and mandated pre- and post-testing counseling.
Psychologists and other professionals have also written against mandatory HIV testing and for the balance between rights and public health approaches because of the mental health impacts of receiving an HIV-positive diagnosis. In their 1988 American Psychologist article "AIDS antibody testing. Will it stop the AIDS epidemic? Will it help people infected with HIV?" Thomas Coates and colleagues cite several studies that suggest significantly negative mental impacts and contrast that with mixed evidence that knowledge of HIV status changes risk behavior. Availability of treatment and reduction of stigma have improved since then, but Lawrence Gostin raised the issue again in 2006 in The Journal of the American Medical Association, citing especially the risk of suicide in their article "HIV Screening in Health Care Settings: Public Health and Civil Liberties in Conflict?"
Without the exceptionalism tactic, advocates say the funding for AIDS would never have reached current levels.
Indeed, there is an astonishing contrast between the genetic accomplishments around HIV/AIDS and those related to tuberculosis (TB), despite both diseases being responsible for approximately two million deaths each in 2008.
- There are thousands of entirely sequenced HIV genomes – and only six sequenced for TB (which has been around for much longer than HIV/AIDS).
- HIV test kits can be used at home in 20 minutes, while TB diagnostics take days and in-depth expertise. And no tissue bank for TB exists, inhibiting the development of a quicker, point-of-care dipstick diagnostic test.
- Between 1990 and 2009 there were more than 30 new anti-HIV agents approved and not a single one for TB.
Perhaps none of this would be true if activists had not made extraordinary efforts when faced with an exceptional disease.
Despite this massive effort and multiple treatment options, the HIV pandemic peak has only just been reached.
This is striking when compared to the global TB pandemic, which peaked under a public health model before antibiotics even arrived on the scene -- though, unfortunately, neglect and the prominence of HIV/AIDS later caused a global resurgence of TB and drug-resistant TB.
Unintended Consequences: Critiques of Exceptionalism
Some have blamed AIDS exceptionalism of diverting funds from other critical (and more cost-effective) disease interventions. (See: "Global HIV/AIDS Policy in Transition", Science, 2010; and "HIV Testing, Human Rights, and Global AIDS Policy: Exceptionalism and Its Discontents", Journal of Health Politics Policy and Law, 2009.)
Others, including Stephen Lewis, the former UN Special Envoy on AIDS in Africa, refute that claim as an expression of professional jealousy of the AIDS community based on the false assumption of single-sized “pie” funding disease-related research ( See also: "From HIV to Tuberculosis and Back Again: A Tale of Activism in 2 Pandemics", Clinical Infectious Diseases, 2010.)
Nonetheless, funding priorities are beginning to change. The Bill and Melinda Gates Foundation, the Obama Administration and the British government have all announced a shift in priorities to maternal and child health. There has also been significant criticism of the focus on AIDS to the exclusion of the most prevalent and deadly co-infection/opportunistic disease, TB. Some have pointed out lost opportunities for controlling the TB/HIV co-pandemics and have advocated for joint efforts. (Also see: “Living with HIV, Dying of TB”, a report from ACTION - Advocacy to Control TB Internationally.)
Normalization: What is Gained and What is Lost?
Health status, not just HIV status
Advocates such as novelist, human rights activist and judge on the Interim Constitutional Court of Kenya, Unity Dow of Botswana, see how those most affected by HIV/AIDS are harmed by an over-emphasis on individual rights and point out that people go to the clinic to know their health status. Why then, they ask, should someone have to fill out extra forms and potentially suffer other barriers to finding out that status?
Phill Wilson, CEO and Founder of Black AIDS Alliance, put it this way, “Whether we're talking blood pressure or diabetes, cholesterol levels or HIV serostatus, it is important to have as much information as possible about our healthfulness so we can make informed decisions. Everyone should have access to HIV testing regardless of their ability to pay, and each of us should take responsibility for knowing our own and our partners' HIV status. Knowing our own status and that of our partners gives us choices denied when we don’t have that information, including the option of whether to have sex or unprotected sex.”
Testing and Transmission?
On December 1, 2008, the American College of Physicians urged doctors to routinely screen everyone for HIV starting at age 13, a broader recommendation than that of the CDC and the US Prevention Services Task Force. The justification is that “most people do not tell their doctors about risky behavior,” which inhibits a physician’s ability to screen based on risk factors.
From a pragmatic point of view, it is estimated that one in four people with HIV in the US do not know their status.
Even physicians cannot always identify those who are at risk because they themselves may lack knowledge about all of the conditions that might suggest HIV as a co-factor or cause.
Public health experts point to the fact that approximately a quarter of those who do not know their status have already progressed to AIDS and are in immediate need of antiretroviral therapy. (See also: New York City Department of Health and Mental Hygiene, HIV/AIDS Information.)
Research has shown screening to be cost-effective, which is significant if we are to expand testing broadly, beyond only those with confirmed risk factors.
Gillian Sanders and colleagues estimated from their findings that routine testing would reduce the HIV-transmission rate by 20 percent annually. Treatment begun earlier rather than later is associated with better clinical outcomes and increased life expectancy. (See also: “It’s Time to Normalize Testing for HIV”, editorial, Jeffrey Kirchner, American Family Physician, 2007.) Earlier treatment is now being heralded as a way to prevent spread of the disease as well.
It may be the case that the only way to get to “early” testing is to make it universal, or at least normalized for key demographics.
In fact, the CDC has changed its recommendations including the elimination of mandatory pre- and post-test counseling and written informed consent.
Interestingly, written informed consent and full post-test counseling is still required by the New York State Department of Health, contrary to the CDC’s revised recommendations. New York is not the only state with laws passed in the 1980s and 1990s that prevent implementation of the new public-health-oriented CDC recommendations. Again, the extra requirements around testing contrast with consent requirements for hepatitis C (i.e. consent need not be written), which also carries stigma (it is contracted through injection drug use and sexual behaviors) and can be deadly.
Patient opinions have also been elicited, and findings from studies conducted in places as diverse as San Francisco and Botswana suggest that routine medical care should include normalized, but not mandatory, HIV testing. (See also: Lo, B., Meacham, S., & Milliken, J. (1988, June). "AIDS screening: Who is willing to be tested?" Paper presented at the Fourth International Conference on AIDS, Stockholm, Sweden.)
A breach of confidentiality
What might be given up if HIV testing were normalized? Would individual rights be sacrificed? Of particular concern is breach of confidentiality.
One example of a “failed” attempt at universal testing while at the same time protecting rights comes from the southern African nation of Lesotho. Its national effort toward community-based testing was criticized for poor training and supervision of lay counselors, breaches of confidentiality of test results, and lack of post-test resources for those with infection.
On the other hand, Botswana implemented a nationwide “opt-out” policy, in which people were tested unless they actively choose not to be, with great success and without reports of rights violations.
Others worry that rights violations are not being adequately tracked to begin with, and view risking additional rights violations by normalizing testing in a negative light.
What About Treatment?
Ultimately, this debate is about how best to turn the tide of the HIV epidemic, which points to a subsequent debate: immediate treatment vs. couples voluntary testing and counseling (CVTC) as the best form of prevention. The former is critiqued for being unrealistically expensive and guaranteed to cause more drug-resistance; the later is critiqued as denying chemotherapy to persons with HIV/AIDS.
As CVTC is both popular and cheaper than treatment, (UNAIDS, WHO: AIDS Epidemic Update: special report on HIV/AIDS: December 2006 Geneva: The Joint United Nations Programme on HIV/AIDS and the World Health Organization 2006, [PDF]), it may be able to help bridge the growing funding gap (“As the Need Grows, the Money for AIDS Falls Far Short”), (“Punishing success? Early signs of a retreat from commitment to HIV/AIDS care and treatment”). It is important to note that advocates of CVTC do not advocate for no treatment, but rather for a more cost-effective intervention for those not clinically sick. A proposal for moving forward is to expand both CVTC and treatment.
The issues involved with the HIV testing debate highlight the failures of an all-or-nothing policy and point to the need to balance critical concerns. A thoughtful approach in this case, taking into account ethical considerations, the public’s health and new medical findings, could have benefits now, and if a new threat to public health emerges, in the future.
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This installment of "Ethical Inquiry" was written by Cynthia A. Tschampl, Ph.D. candidate in Health Policy at the Heller School for Social Policy and Management, Brandeis University.
For more information on this topic:
- Centers for Disease Control and Prevention (CDC)
- Act Against Aids
- The Office of National AIDS Policy
- Center for Global Health Policy
- Harvard School of Public Health, Program on International Health and Human Rights
- Doctors Without Borders (Medecins Sans Frontieres) Report
- Black AIDS Institute
- Gay Men’s Health Crisis