Gay and Lesbian Medical Association

Marj Plumb

Director of Public Policy
Gay and Lesbian Medical Association

RE: CONFIDENTIALITY OF PATIENT MEDICAL RECORDS

On behalf of the Gay and Lesbian Medical Association, I appreciate the opportunity to present to you our concerns regarding the issue of privacy and medical records confidentiality. The Gay and Lesbian Medical Association is an organization of more than 1,800 lesbian, gay, bisexual and transgendered physicians, medical students, and their supporters in all 50 U.S. states and 12 countries. Founded in 1981, GLMA works to combat homophobia within the medical profession and in society at large and to promote quality health care for lesbian, gay, bisexual, and transgendered patients.

The issue of medical records confidentiality is an important element of our mission. As physicians, our members have a responsibility to protect individual patient information. As an organization, GLMA has a responsibility to ensure that health care policies are enacted that improve access to competent, quality, bias-free health care for lesbian, gay, bisexual, and transgender patients.

Many of our member physicians provide health care and psychiatric services to a diverse population of lesbian, gay, bisexual, and transgender patients. Additionally, a significant portion of our membership provides care to large numbers of HIV-infected individuals. Our members' concerns regarding patient confidentiality is born out of this day-to-day experience of caring for a patient population that is shunned, stigmatized, and often overtly discriminated against by society, health care institutions, and homophobic medical providers.

GLMA?s 1994 national survey of lesbian, gay, and bisexual physicians underscores the catch-22 lesbian, gay, and bisexual patients face in the health care environment and highlights the need for protections that ensure confidentiality. Of the physicians surveyed, 98% believed that lesbian, gay, and bisexual patients have medical concerns that might be overlooked if they do not disclose their sexual orientation. Yet, 67% of providers surveyed reported knowing of lesbian, gay, or bisexual patients who have received substandard care or been denied care because of their sexual orientation.

GLMA believes that the relationship between the patient and the medical provider must be open, forthright and based on trust for appropriate medical care to be provided. Trust, however, is often an elusive concept. For many lesbians and gay men, trust within the medical system is difficult to obtain - and for good reason. The survey of our member physicians documented that when a patient's sexual orientation and/or HIV status are made known, she or he runs a serious risk of encountering discrimination.

The following paragraph highlights some examples of bias and discrimination from the 1994 survey as reported in "Anti-Gay Discrimination in Medicine: Results of a National Survey of Lesbian, Gay and Bisexual Physicians:"

"Many respondents told of physicians and medical students referring to LGB (lesbian, gay and bisexual) patients as faggots, dykes, sissies, fudgepackers, homos, queers and other epithets. In several cases, respondents recalled physicians actually calling patients these terms directly to their faces. In others, it was literally behind their backs: A Massachusetts resident reported that, when she treats gay male patients, her attending physician routinely stands behind them and mouths the word 'sissy.' Reports of substandard or denied care for LGB patients were numerous and varied. A medical student described seeing an emergency physician refuse to care for a patient with colitis once the patient identified himself as a sexually active gay man. A urologist wrote of a young man denied appropriate surgical therapy for his testicular cancer because he was gay and therefore perceived to be at risk for HIV. A Michigan family practitioner personally witnessed an anesthesiologist let a man he knew to be gay labor with airway obstruction after surgery. A Massachusetts physician worked with a colleague who singled out a gay patient with an anal abscess and refused to give him routine pain medication when draining the site. And a Wisconsin psychiatrist reports that, while he was a resident, he heard another resident boast that he had sent away a 'crying fag who came in all upset because his lover had broken up with him.'"

These case studies of the discrimination lesbian, gay, and bisexual patients have experienced at the hands of an often homophobic medical system are supported by additional research on medical provider homophobia. In an article published in the recent edition of the Journal of the Gay and Lesbian Medical Association (1997, Vol. 1, No. 1) Dr. Katherine O?Hanlan and colleagues discuss several research studies which found astounding levels of homophobia among nurses, physicians, and medical students. One study cited reports that of 930 physicians in a Southern California medical society "fully 40% surveyed reported being uncomfortable providing care to gay or lesbian patients."

Fear of discrimination has very real consequences for the health and well-being of lesbian, gay and bisexual patients. Dr. O'Hanlan and colleagues report that several studies revealed that 67-72% of lesbians withheld information about their sexual behavior from their health care providers, citing a fear of sanctions or repercussions if they revealed their homosexuality. As a result, 84% of lesbians in one study said they were hesitant to return to their physicians' office for new ailments, and were less likely to return for indicated medical screening tests, such as Pap smears, blood pressure, cholesterol, stool blood assays, and so on.

The affect of stigma associated with HIV/AIDS can not be over-emphasized within the context of medical records confidentiality. As Dr. Alvin Novick reports in "Stigma and AIDS: Three Layers of Damage," (JGLMA, 1997, Vol. 1, No. 1) while few exceptions exist, "over 95% of persons with AIDS in the United States belonged to social groups whose fundamental human rights had been truncated long before the arrival or appearance of HIV infection...gay and bisexual men, injection drug users, African-Americans, Haitians, Hispanics, and sex workers. All of these people had been, by tradition and by law, isolated, ostracized, or constrained from occupying full citizenship and social equality."

As we have stressed repeatedly, having it be known that one is lesbian, gay, bisexual, or HIV-infected leaves one open to being openly despised and potentially discriminated against. Within the medical system, this discrimination can lead to loss of access to care, inappropriate or inadequate care, and loss of insurance, employment and/or housing. Current state and federal legislation does little to protect the confidentiality of patient medical records or information, and discrimination based on sexual orientation and gender identity is still legal and commonplace throughout our society. And although discrimination based on health status (including HIV status) is protected by laws such as the Americans with Disability Act, discrimination still continues to occur.

Lesbian, gay, and bisexual patients, and those with HIV, are acutely aware that when meeting a health provider for the first time disclosure of sexual orientation and HIV status should be done cautiously. This committee can probably do little to thwart discrimination that lesbians, gay men, and bisexuals fear as a result of contact with the initial health provider. However, you can ensure that disclosure of patient information (including secondary disclosure) is strictly limited and appropriately protected. The risk of inappropriate disclosure of confidential patient information has the potential to increase with the more widespread use of electronic medical records and we urge you to establish the strongest guidelines possible to protect the confidentiality of sensitive patient information.

Specifically, we believe your recommendations to the Secretary of the Department of Health and Human Services on the issue of privacy of individually identifiable health information should include the recognition that only universal access to health care and strong anti-discrimination laws throughout society will protect patients who are vulnerable to societal bias and discrimination. We implore you to make that statement in your report to the Secretary.

The Gay and Lesbian Medical Association believes that policies and laws should be implemented which strictly limit unnecessary disclosure of confidential medical records. We support the strongest possible penalties and sanctions related to the improper disclosure of this information.

The Gay and Lesbian Medical Association is eager to work with you as you make recommendations that will be used to shape legislation and policies. Together we can ensure that appropriate standards are implemented which limit the unnecessary disclosure of confidential medical records. These standards must include specific protections of a patient's sexual orientation, sexual behavior, gender identity and health status (including HIV) as documented in patient medical records.

Thank you for your attention.