Testing, Testing...HIV: Taking the Stigma Out of AIDS Testing

Noelle Swan
Spare Change News

“College-educated black women who live in the suburbs and date lawyers don’t get HIV and AIDS. This just doesn’t apply to you,” Kimberly Wilson remembers her doctor saying back in 2004.

That was the first time she asked her physician for an HIV-test.

Four years, seven bouts of shingles and five requests for an HIV-test later, Wilson was admitted to Boston Medical Center. She had stopped in hoping to get some prescription cough syrup. Emergency room doctors ordered a chest X-ray.

“The technician who took the X-ray of my lungs thought the machine was broken, because the lung was so black, ” Wilson recalls.

The machine had not malfunctioned; Wilson’s lungs were coated with thrush, a yeast infection common among patients with compromised immune systems. Soon, she was diagnosed with Pneumocystis carinii pneumonia (PCP), an opportunistic infection commonly associated with HIV.

Four years after she first requested an HIV-test, Wilson learned that she was HIV-positive. Today, she manages her condition through a myriad of medications and describes her health as excellent. But she believes that an earlier diagnosis could have eliminated years of pain and suffering.

Since her diagnosis, she has become a self-described poster child for HIV-testing, working as a peer advocate for AIDS Action, routinely sharing her story with the media and serving as a delegate at a recent international conference on AIDS and HIV in Washington, D.C.

“I think everybody should get an HIV-test,” she says. “It should be part of your physical. It should be a part of your whole entire care.”

Recent Massachusetts legislation targeting consent requirements for HIV-testing aims to normalize the process and potentially improve testing rates.

Until last month, state law required that patients interested in receiving an HIV-test had to sign a form giving written informed consent. The new law allows patients to provide consent verbally in a move that doctors, advocates and policymakers hope will normalize the process.

According to the Centers for Disease Control, over 1 million Americans are living with an HIV-positive status. However, as of 2006, one in five of those patients were unaware of their condition. In response to this data, the CDC issued new guidelines for the management and care of HIV, calling on states to streamline the testing process.

Many physicians and advocacy organizations in Massachusetts, such as the AIDS Action Committee, have petitioned the state Legislature to remove the requirement for written informed consent, which they consider to be an unnecessary hurdle for testing.

“Many states early on had this [requirement for written consent] because of the discrimination and stigma surrounding HIV, but also because in early years it was a death sentence,” explains Rebecca Haag, President and CEO of AIDS Action Committee in Massachusetts.

In recent years, HIV treatment protocols have improved dramatically. Many patients with an HIV-positive diagnosis are able to successfully control their condition with medication and do not develop AIDS. Wilson’s story illustrates how effective treatment can be, once the diagnosis has been confirmed.

“HIV testing has been encumbered for about 25 years, since we first developed the tests in 1984,” says Stephen Boswell, President and CEO of Fenway Health in Boston and former HIV policy advisor to the Clinton Administration.

“Over the years, [written consent] has been felt by many clinicians to be more and more of an impediment to people’s willingness to be tested,” Boswell says. “Not only did it continue to stigmatize the patients but made the testing process more complicated.”

By removing the formality of written informed consent, legislators and physicians hope that HIV-testing can become part of routine conversation between patients and their doctors.

“Patients will still be informed of what the test means, they will not be tested without their knowledge and they have the right to opt out or opt in of getting tested, but it won’t add paperwork to that process,” says Rep. Carl Sciortino (D) of Medford.

Once an HIV-positive diagnosis has been confirmed, strict laws govern how that information can be shared with other providers.

“If a patient has an HIV-positive result, their test results cannot be shared with anybody else without their written informed consent; and I think that’s for good reasons,” explains Sciortino.

Boswell recognizes the need to protect patients’ privacy. However, he worries those strict requirements for sharing information could compromise patient care.

“For example, if my patient is seen at an ER, I could not relay any HIV testing information without first obtaining the written informed consent from the patient who might be unconscious,” he explains.

Boswell says that while he and his colleagues are celebrating the removal of one impediment to care, they are left struggling to understand what is required of them in terms of sharing information in the age of electronic records.

“Most of the institutions are struggling to figure out how to comply. If we have to get written informed consent every time we ask another clinician for assistance, it would dramatically complicate the process of providing care to patients who are HIV-positive.”

In the final days of the 2012 legislative session, Sciortino sought to address this issue by adding language into the health care payment reform law that allows patients to extend overall consent to information sharing. The health care payment reform law placed heavy emphasis on the use of electronic medial records to streamline healthcare. However, Sciortino’s language did not make it into the final wording of the bill signed by Governor Patrick earlier this week.

NOELLE SWAN is a Spare Change News writer and editor.