Op-Ed: Eliminating Patient Safeguards Not The Way To Fight AIDS

By Elisabeth R. Benjamin and Sharon M. McGowan — Too many people -– as many as 20,000 in New York City alone -– are believed to be unaware that they are HIV-positive. Public health experts at the federal, state and city levels are right to call for increased HIV testing by health providers. But New York City Health Commissioner Thomas Frieden’s proposals are based on an old-fashioned public health surveillance model, and his prescription for curing the HIV crisis –- eliminating counseling and informed consent -– is based on a crucial misdiagnosis of the problem.

Last spring, Commissioner Frieden led an effort in Albany to amend the Public Health laws to eliminate pre-test counseling and informed consent. These, however, are the only safeguards that ensure that patients will ever be told that their personal medical information will be reported to, and maintained in, a government data base.

As the legislative leaders in Albany recognized, pre-test counseling is not a barrier to care. On the contrary, it empowers patients to make decisions about how to access quality HIV care and services. Furthermore, it is one of the only opportunities for educating people about the disease. Many people still lack basic knowledge about HIV and how it is transmitted. In fact, a recent survey found that almost 25 percent of Americans wrongly believe that you can get HIV from sharing a glass of water. Without pre-test prevention counseling, we risk losing a critical opportunity to educate people about HIV.

Informed consent is also no barrier. If medical providers routinely offer testing and explain its benefits, patients are better able to take care of themselves and others when they receive their results.

Testing people without consent, on the other hand — and then requiring mandatory reporting of personal medical information to the government — is likely to deter people from getting the care they need. If the state is going to collect the names and deeply personal information of people with HIV from their health care professionals, at a very minimum, people deserve to know that this information is being collected and how it is going to be used.

Commissioner Frieden’s outdated approach does not address the contemporary and much more complex problems that people who are HIV-positive face.

First, according to the United Hospital Fund, as many as one out of every four adults in New York City has no health insurance. Uninsured New Yorkers face serious barriers to accessing quality health care in their communities. Commissioner Frieden’s proposals do nothing to help enroll the estimated 600,000 New Yorkers who are eligible for, but still unenrolled in, available public insurance programs.

Second, Commissioner Frieden’s proposals do not address the need to make HIV testing and counseling available in key non-medical settings, such as community-based organizations, drug treatment programs, homeless shelters and prisons.

Instead of addressing these needs, Commissioner Frieden has tried to take an easy way out. This is a mistake.

Everyone wins when patients are willing and informed partners in the decisions about their health care and medical information.

Elisabeth R. Benjamin, MSPH, JD, is Director, Reproductive Rights Project, New York Civil Liberties Union. Sharon M. McGowan is Staff Attorney, AIDS Project, American Civil Liberties Union.