Say What You Like, An HIV Diagnosis is Anything But "Routine"

by Joseph Sonnabend, M.D., CHLP Medical Resource Specialist, and
Ashley Burczak, CHLP Program and Development Associate

With little attention to the concern of patients and their advocates, the medical establishment has largely taken up the aggressive push of the 2006 CDC recommendations on HIV testing in clinical settings as a tool to eliminate informed consent to diagnosis and care. This is truly unfortunate, and contrary to patients’ best interests. The embrace of “opt-out” HIV testing, in which patients essentially are told they will be tested unless they object, is at odds with hard-won advances in physicians’ ethical requirements for dealing with patient interventions with potentially serious health implications.

For informed consent to be present, potential risks as well as benefits must be disclosed based on a respect for the autonomy of the individual and the seriousness of the possible diagnosis or procedure at issue. That means we accept that people should be able to decide for themselves whether or not to agree to something that is proposed to be done to them, and that they are sufficiently informed about the risks, benefits and any implications connected with the outcome of the procedure so that they are able to make a meaningful decision. Respect for individual autonomy means that we take care to avoid explicit and even more subtle forms of coercion in performing any action that may pose a risk of significant harm.

When AIDS was regarded as an almost uniformly fatal disease for which there was no treatment, obtaining a positive test result was almost uniformly a traumatic experience, even driving some patients to suicide. So the need for informed consent to be tested seemed quite obvious then. Therefore, a change in whether an HIV test is treated as a “routine” procedure, and therefore not warranting truly informed consent, must be preceded by a significant change in how a diagnosis of HIV infection is viewed.

According to the CDC, the introduction of potent antiviral therapy has changed the way we, as a society, view HIV. Everyone knows it’s no big deal, they say. It’s a chronic manageable condition, like diabetes or high blood pressure. So taking a test for HIV is like having your blood pressure checked or checking your blood glucose levels. We certainly don’t bother people with written informed consent for things like these.

This view of AIDS is absurd. While antiviral drugs have indeed transformed the lives of infected people, AIDS is still a very serious, incurable disease. The stigma still associated with HIV also distinguishes it from the category of chronic manageable diseases. To say it is—which is exactly what the CDC is arguing to justify the elimination of documented consent to be tested—is to mislead people. Indeed, the near-hysterical reaction of many health care providers following an exposure to patient blood, followed by an unwillingness to take AIDS drugs as a post-exposure prophylaxis against the small risk of infection due to the drugs’ toxicity—still appear in current news reports, coupled with demands for mandatory patient testing. Is that how most people react to high blood pressure, or even exposure to other sexually transmitted diseases?

AIDS remains a serious disease. Unlike the drug advertisements that show robust HIV infected individuals climbing mountains, the reality is very different for many infected individuals. In fact, there are several factors that make an HIV diagnosis quite serious, such as:

• HIV medications are often accompanied by serious adverse effects that make it extremely difficult for patients to continue treatment consistently. The side effects can be quite common, and include diarrhea, changes in fat distribution, an elevated risk for heart disease, bone disease (including serious hip disease), depression, and loss of libido -- and these are only some of the things that may happen.
• Every three or four months, patients experience the anxiety of having themselves tested to see if treatment is still working. Often the treatment is found to no longer be effective and the drugs must be changed.
• Individuals may have difficulty obtaining adequate medical care. Depending on their location, it is possible that not all drugs will be available. They may not be able to afford insurance, may not qualify for free care, and may be disqualified from other life insurance or private disability coverage.
• · Some individuals will no longer be able to work, may find themselves excluded from families and intimate relationships, or will experience unsupportive and discriminatory reactions from employers and others.

An HIV diagnosis is a life-transforming experience. It is the day you learn you have a serious, incurable infection that probably will require lifelong treatment with significant adverse effects. As such, it most definitely fits into the category of procedures that require informed consent. To remove the requirement for informed consent to be tested is in effect saying that the government no longer regards AIDS as a serious disease, beset with uncertainties and a multitude of problems, both medical and social. 

Equally important, the benefit of obtaining informed consent is that it sets up a framework for delivering a result that can provide appropriate support in the event of a positive result, and also an opportunity for counselling in the event of a negative result. This will allow for more patient trust, improved treatment compliance, and better outcomes. If clinicians focus on patient need rather than provider preference, it’s hard to see a different conclusion.