Legislative Memo: HIV Testing

This legislation purports to address important public health objectives: facilitating a large-scale increase in the numbers of people who are tested for HIV; encouraging access to early treatment; and reducing exposure to HIV/AIDS.

However, in seeking to accomplish these objectives, the proposed legislation would eliminate important protections currently in place that ensure people who choose to be tested for HIV do so with the full knowledge and understanding of the meaning and implications of either a positive or negative HIV test result.

New York health care providers serve the highest concentration of persons at risk for or living with HIV in the nation. It is therefore important to remove unreasonable administrative and other burdens that compromise efforts to make HIV testing widely available and efficiently administered.

However, the streamlining of HIV testing procedures need not – and should not – require abandoning the guarantee of informed consent to individuals regarding the nature and consequences of providing that consent.

Great strides have been made in reducing the stigma associated with HIV/AIDS and in treating those with the virus. But a positive test for HIV is a life-altering event, with ramifications unlike those for any other type of medical test.

In this sense progress has not been as great as suggested by those who propose eliminating the requirement that people affirmatively consent to HIV related testing.

People diagnosed with HIV are still subject to harassment and discrimination in the workplace and in health care settings; still subject to prosecution under criminal laws because of their status; and still subject to extreme social aversion.

In light of these facts, the failure to inform and counsel persons tested for HIV is not only unwise, it is irresponsible. Legislators must keep in mind that testing is not an end in itself, but rather a diagnostic intervention that is intended to prevent and treat disease.

A well-designed HIV testing protocol will educate the public regarding the importance of being tested; prevent infection and high-risk behavior; and encourage compliance with treatment programs.

In short, the goal of such a program is not merely to test, but to reduce the incidence of infection. And this objective may be subverted if HIV testing procedures fail to require informed consent before administering the test.

For these reasons, the NYCLU opposes A.4813-C/S.7529-A, and urges legislators to include in any HIV testing bill (1) a requirement that test subjects affirmatively consent to testing for HIV; and (2) a requirement that essential information regarding the nature and consequence of the test is provided in writing before an individual elects to be tested.

Informed consent requires that a patient affirmatively agree to be tested for HIV

Public health authorities estimate that nearly one-quarter of New Yorkers with HIV do not know that they have the virus. It is appropriate, then, that the current debate over HIV testing has centered on removing barriers to testing. But the analysis of this issue has been flawed by misinformation and distortion.

The proponents of eliminating the current requirement that health care professionals obtain specific written informed consent from a patient before administering an HIV test cite the revised testing guidelines published by the Centers for Disease Control (CDC) in September 2006.

However, the majority of experts, including the CDC’s experts, maintain that HIV testing must remain voluntary and informed. As a practical matter there is a tension between these two important objectives: efficiency versus effective pre-test counseling. In the proposed legislation efficiency trumps informed consent.

The amended law would permit the use of a medical consent form authorizing general medical care and testing, provided that the patient can “opt out” of receiving an HIV test.

It is well known that when engaging an individual in a contractual or similar administrative relationship, the most effective way to gain passive acceptance – or inaction – is to offer an individual the choice of “opting out.” Performing HIV testing based upon a general medical consent – that is, except when the individual affirmatively says “no” – creates an unacceptably high risk that testing will be performed without meaningful consent.

Indeed, according to a 2002 study conducted by the CDC, nearly 16 percent of pregnant women tested in Arkansas under an opt-out procedure with not written consent requirement did not even know that they had been tested for HIV.

The AIDS Coordinating Committee of the American Bar Association cautions that “[t]he risks and benefits of an HIV test . . . involve complex physical, emotional, social and legal consequences, and thus cannot be encompassed by a general medical consent.”

The American Academy of HIV Medicine agrees: “[A] general consent to care does not meet the legal standard of informed consent for agreeing to have an HIV test in most instances.”

Finally, policy makers should be aware that a preoccupation with eliminating informed consent may be misguided. Simply requiring health care providers to offer HIV testing would dramatically increase the numbers of people who choose to have the test performed.

Under an Illinois law that required an offer of voluntary testing in correctional facilities without eliminating specific informed consent and pre-test counseling requirements, nearly 35,000 HIV tests were conducted (following counseling and informed consent) – an increase of 475 percent in the number of persons tested between 2004 and 2006.

Pre-test counseling is critical to informed consent

A.4813-C/S.7529-A would eliminate the requirement that health care providers give those who are considering being tested for HIV critical information about the test itself, the benefits of early diagnosis and medical intervention, the availability of anonymous testing, and about confidentiality and anti-discrimination protections that exist for those who test positive.

The legislation has been amended to require counseling, but only after an HIV test has been administered and only in the event of a positive result. This scheme only creates a new risk to public safety.

The argument for eliminating the obligation to provide pre-test counseling is based on the premise that this process is unduly burdensome. However, there is little if any evidence to support this assertion. Several studies have shown that health care professionals do not find pre-test counseling prior to obtaining written consent to an HIV test is a barrier to efficiency. The CDC has acknowledged that there are successful models for expanding testing that do not abandon safeguards that ensure testing is voluntary.

Indeed, New York City’s Health and Hospitals Corporation (HHC) was able to increase the number of patients tested in its hospital system by 63 percent in 2006 by expanding the number of staff trained to do pre-test counseling – and by providing pre-test counseling information in educational videos and pamphlets.

Reports of this nature are not unique to New York City. Making testing more routine and streamlining consent procedures (which often involves committing pre-test counseling information to writing), has been shown to increase the rates of testing in other states that require written informed consent.

The expanded use of HIV testing makes effective pre-test counseling all the more important. Providers unfamiliar with such testing – affiliated with the myriad of health care institutions that will now be offering HIV testing – may lack the qualifications and experience they need to provide information about HIV and HIV related testing to their patients that is medically accurate and unbiased.

Without requiring standardized pre-test counseling memorialized with the patient’s signature, we will simply have to trust that providers will be able to provide accurate information to each patient who is tested for HIV. This is not a responsibility that should be left to blind trust.

Conclusion

It is the position of the NYCLU – a position shared by most health professionals with experience in treating HIV/AIDS – that it is possible to increase the number of people who are tested for HIV without eliminating long-standing protections that guarantee that people affirmatively consent to HIV-related testing with full information about what the test means.

This involves providing clear, accessible information that treatment is available for those who test positive, that testing is voluntary and can be done anonymously, that the law protects the confidentiality of HIV-related test information, that the state Department of Health has access to HIV-related test information when a person tests positive, that the law prohibits discrimination based on HIV status, and that services are available to those who experience discrimination.