Intersection of Policy and Law

From the October 2010 Of Counsel

Almost three decades have passed since the first HIV cases were identified in the United States, but the unfortunate reality is that there is still significant stigma associated with HIV. Too often, disclosure that a person has HIV wreaks havoc on that person's life. And worry about stigma has been linked to failure to get tested for HIV, delays in seeking medical care, restricted access to medical care, failure to adhere to medical treatment and faster disease progression. Allowing individuals to retain control over disclosures of their confidential HIV records therefore remains exceptionally important.

Yet breaches of HIV confidentiality continue to occur. We recently learned that the California Department of Health Care Services illegally disclosed the names and contact information of approximately 5,000 HIV-positive individuals eligible for the state's Medicaid program, Medi-Cal, without their consent. The information was released sometime between 2007 and 2009 to a third-party service provider, the Los Angeles–based AIDS Healthcare Foundation, which then solicited people with HIV to enroll in its services.

In response, Lambda Legal, along with the American Civil Liberties Union of Northern California and the HIV & AIDS Legal Services Alliance, sent a letter on September 9, 2010, to the California Department of Health Care Services, demanding a full explanation for the unauthorized and illegal disclosures and seeking assurances that further such disclosures would not occur. We explained that the state agency's actions violated both California statute, which prohibits the unauthorized disclosure of an individual's HIV status, and the California Constitution, which protects the right to privacy.

Laws prohibiting the unauthorized disclosure of HIV status exist for good reason. Based on the hundreds of calls Lambda Legal receives each year from affected people nationwide, we know first-hand of the discrimination and harm that often follow disclosure of a person's HIV-positive status. We received 454 complaints of HIV discrimination in 2009 alone, and 403 in 2008. Breaches of confidentiality consistently rank among the three most common forms of HIV-related problems that prompt requests for our help.

The cases we litigate similarly confirm that HIV-positive people whose serostatus is known still frequently encounter bias in a broad, troubling range of settings. Our client Robert Franke, a retired university provost and minister, was evicted from an assisted living facility in Arkansas. Another Lambda Legal client, Bob Hickman, was fired from his job as a restaurant manager. Melody Rose was denied gallbladder surgery.

It is especially appalling when government breaches the confidentiality of personal medical information, thereby creating the risk of discrimination. For instance, Stanmore Cooper, a pilot who disclosed his HIV status to the Social Security Administration (SSA) in applying for long-term disability benefits, had to seek redress in court after his HIV status was wrongfully shared among the SSA, the Federal Aviation Administration, and the U.S. Department of Transportation, all without his consent, in violation of the Federal Privacy Act.

In this latest instance, the large-scale, unlawful release of confidential patient information by the California Department of Health Care Services not only violates patient privacy and autonomy, but also undermines public health. People are more likely to get tested for HIV when they know that their test results will remain private. Patients are more likely to comply with a medical care regimen when their privacy rights and personal autonomy are respected. That is particularly true with respect to chronic illnesses such as HIV, where health outcomes commonly rely upon patient adherence to a long-term medical care regimen.

Yet it is difficult to imagine a more off-putting start to medical care than learning that one's HIV status has been revealed to a total stranger—and by the very entity that is supposed to protect public health. The fact that the stranger here is a service provider does not make the unauthorized disclosure legal, nor does it make the privacy invasion any less shocking. It is hard to believe any of us would want private clinics or pharmaceutical companies personally soliciting us in the privacy of our homes, urging us to purchase treatment after having targeted us using information about intimate health conditions that the law requires be kept confidential.

Finally, while Lambda Legal works hard to ensure HIV confidentiality rights are respected, it is important to remember that our goal is to ensure respect for the choice of the individual regarding this deeply personal information—and that many people choose to be out as HIV-positive. Having control over one's medical information involves both the right to keep information private and the ability to share it when and with whom one chooses. One of the most powerful and transformational things we can do to reduce discrimination and stigma—whether on the basis of HIV status, sexual orientation or gender identity—is to live our lives openly and courageously, and to show by our dignity, competence and respect for others that the biases are unfounded. Of course, doing so can subject one to discrimination. Our work aims to ensure that, whatever a person's decisions about privacy and openness, they remain within the control of the individual, and not of the government or third parties.