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Why the United States Needs Better Confidentiality Laws for Minors with HIV/AIDS

At the beginning of the International AIDS Conference held in Washington, D.C. in July, Secretary of State Hillary Clinton renewed the United States’ commitment to an “AIDS-free generation a call to action that would reverberate throughout the rest of the conference.This ambitious goal stems from recent outstanding advancements in biomedical research on treatment and prevention, including the FDA’s approval of the antiretroviral medication tenofovir/embitricitabine (Truvada) for pre-exposure prophylaxis.

But the realization of this goal will take much more work, including evaluating and changing laws that keep people from getting tested and staying in treatment and ramping up supportive services that help low-income people remain in care and access their medicines. This combined effort will require first and foremost identifying the sub-populations in which the epidemic is growing the fastest and in which barriers to testing and treatment are most profound. Young people, and especially adolescents, represent one of these key sub-populations.

Health organizations and city and state governments across the United States have sounded the alarm bell about the rising rate of HIV among adolescents. The U.S. Office of National AIDS Policy estimates that half of all new HIV infections in the U.S. occur in people younger than 25. In 2010, there were 2, 266 new HIV infections diagnosed among individuals in the U.S. between the ages of 13 and 19. In 2008, an estimated 29,056 adolescents and young adults were living with HIV in the U.S. Although the CDC does not distinguish between minors under the age of 18 and young adults for surveillance purposes, high risk sexual behaviors have been shown to be prevalent among adolescents under the age of 18 and rising rates of HIV in this population have been associated with these behaviors.

Adolescents are also less likely than adults to be tested for HIV, indicating that the scope of the problem may be even larger than currently estimated. While it is estimated that between 66% and 80% of adults with HIV in the U.S. are aware of their status, only about 16% of adolescents living with HIV in the United States are cognizant of their illness.

What can be done to curb rates of HIV among adolescents in the U.S.? Moving away from abstinence-only sex education is one part of the solution. But another, and less frequently discussed, part of the solution is to change state laws that restrict the ability of minors to consent to testing and treatment for HIV.

Although Iowa is the only state that requires parental notification when a minor tests positive for HIV, the laws in many other states are confusing. In many states, there is no specific indication that a minor may independently consent to testing for and treatment of HIV. In a state like New York, minors may consent to HIV testing but only if the provider assesses that the minor has the capacity to consent. On what basis the clinician is to make that determination is not clear in the law. At the same time, a minor may not consent to treatment for HIV in New York, even if he or she may receive confidential testing. In effect, if a minor tests positive for HIV and wants to seek treatment in New York, parental notification becomes necessary.

Part of the confusion in many states about whether minors are eligible to consent to HIV testing and treatment has to do with the difficulty of classifying HIV. In some states, HIV is clearly defined as a sexually-transmitted infection (STI), covered under the same confidentiality and consent laws as any other STI. In other states, HIV is not classified as an STI but may have a specific law pertaining to it. State-to-state variability in the classification of HIV as an STI often confuses healthcare providers and adolescent patients, leading to situations in which minors may assume they are not eligible for confidential testing and treatment for HIV. Preliminary evidence demonstrates that minors are deterred by the perception that testing and treatment for HIV will be revealed to their parents or guardians.

A commitment to an AIDS-free generation means a commitment to protecting those most vulnerable to the disease. States should clarify their laws on minors’ right to consent to treatment for HIV and the confidentiality of HIV-related information. HIV should also be explicitly included in laws already in place in many states that allow minors to consent to testing and treatment for STIs. Allowing adolescents to consent to confidential testing and treatment may go a long way in reducing infection rates among youth in the U.S., bringing us one small step closer to realizing the dream of an AIDS-free generation.

  1. Some states, like Pennsylvania, may not have specific statutory provisions for confidential testing and treatment of HIV, but have statutes that provide for such confidential services under circumstances that encompass HIV infection.

    Since HIV is a “reportable disease” in Pennsylvania, for example, minors should be provided with confidential testing and treatment under the state’s Minor’s Right to Consent to Medical Treatment Act:

    Any minor may give effective consent for medical and health services to determine the presence of or to treat pregnancy, and venereal disease and other diseases reportable under the act of April 23, 1956 (P.L. 1510), known as the “Disease Prevention and Control Law of 1955,” and the consent of no other person shall be necessary.

    Medical providers have legal and ethical obligations to acquaint themselves with the laws of their jurisdiction and to counsel their patients accordingly.

    Working to eliminate disincentives for minors to obtain HIV testing is crucial, and supported by most professional medical organizations, including the Society for Adolescent Medicine and the American Academy of Pediatrics.

  2. Thanks for your comment. I think a large part of the problem is the fact that a doctor, administrator, or patient might have to search in various codes and statutes to determine whether HIV/AIDS testing and treatment are confidential for adolescents. This may be a deterrent to testing for some. In fact, some evidence suggests that even in situations in which confidential HIV testing and treatment are available for minors, they might not be aware of it.

  3. Definitely so. There is a morass of state legislation about which even lawyers often are confused.

    Too often, in training health care professionals, we run across policies and procedures created by a misunderstanding of that jurisdiction’s law.

    Two good (but not flawless) internet resources for clinicians on the state laws of HIV testing are the National HIV/AIDS Clinicians’ Consultation Center’s Compendium of State Laws:

    The other is Kaiser Foundation’s various HIV testing fact sheets and tables:

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