In a sweeping revision of federal guidelines, the Centers for Disease Control and Prevention (CDC) recommended in September that doctors include HIV tests in routine medical care for all Americans between the ages of 13 and 64, regardless of patients’ risk.
The aim is to identify the nearly 250,000 Americans believed to have HIV who don’t know they are infected.
The guidelines recommend screening all patients ages 13 to 64 at least once, and annual screenings for high-risk patients.
The CDC previously recommended “routine testing” for high-risk groups: intravenous drug users, homosexual males, and people living or working in areas where more than 1 percent of the population is infected with HIV. It also recommends testing for all pregnant women.
Although the CDC said it supports voluntary testing, under the new guidelines the HIV test is an “opt-out” screening–meaning a patient will no longer have to sign a separate consent form for the test.
Instead, if a patient signs a general consent for care and doesn’t expressly decline the HIV test, the physician can order the test as part of a standard battery of blood tests.
“We hope these changes will reduce the stigma that surrounds HIV testing,” CDC spokeswoman Jennifer Ruth said prior to the release of the final recommendations.
CDC officials also expressed hope that expanded testing will allow HIV-infected Americans to benefit from earlier treatment after diagnosis.
While the guidelines are not legally binding, they inform the way health care providers practice medicine and which services insurance companies cover.
Patients should be wary of the “march of mandates” coming from the CDC, said Twila Brase, president of the Citizens’ Council on Health Care, a watchdog organization promoting free-market health care policy.
“This is an example of the government practicing medicine though its power,” Brase said. “The CDC is taking medical decisions out of the hands of patients and doctors.”
Brase fears the new guidelines will lead to privacy breaches.
Despite the implications of its title, Brase noted, the “privacy rule” of the Health Insurance Portability and Accountability Act (HIPAA, passed in 1996) actually allows the government to collect and share citizens’ health care information without their knowledge or consent.
Furthermore, Brase noted, HIPAA’s privacy rule does not regulate disclosure of data once the government or law enforcement agencies have obtained it. Data could be used to build regional and national immunization or disease-specific databases. It can be shared with medical researchers, public health officials, public policy researchers, and organ transplant coordinators, among others–all without patient consent.
Patients tested for HIV under the new CDC guidelines should know who will receive their results, Brase said. At least 43 states require health care providers to report to state health agencies the names of patients infected with HIV.
Rose Saxe, staff attorney for the American Civil Liberties Union’s (ACLU) AIDS Project, shares Brase’s concern about patients’ privacy. While the ACLU supports expanded HIV testing, Saxe said the group believes states should require health care providers to get patients’ consent before turning over information about their HIV status to state health agencies.
Saxe noted most states use a standard reporting form that includes private information about HIV patients–including names, racial demographics, and details of their sexual behavior or drug use.
“People think this information they give their doctors is [strictly] confidential,” Saxe said. “In reality, it’s mostly confidential.”
The ACLU is also concerned the new guidelines could prompt caregivers to eliminate pretest counseling and a separate consent form for the test, Saxe said. If a patient suffers a gunshot wound and needs emergency care, Saxe pointed out, the form he signs for general medical care would be sufficient consent to test him for HIV under the new guidelines.
The ACLU fears patients will hesitate to tell their doctors key information about their HIV risk factors if they know their information will be sent to state governments.
“We need greater transparency regarding government surveillance in public health,” Saxe said.
Brase hopes transparency will come in the form of patient-consent laws that return control of private information to patients themselves.
In the meantime, Brase advised, “When a doctor takes blood from your arm, you should know what you’re [being] tested for and where [the results] are going.”
Hilary Masell Oswald ([email protected]) is a freelance writer in Evanston, Illinois.