The Deaf and Hard of Hearing and HIV/AIDS in the United States

The American Social Health Association estimates that 28 million people in the United States—approximately 10 percent of the population—are deaf or hard of hearing. The deaf and hard of hearing exist within a unique culture, a fact not always appreciated by people with hearing. Many advocates believe that recognition by the hearing public that a deaf culture exists is a crucial first step toward educating the Nation about the needs of the deaf and hard of hearing who are living with HIV.

Surveillance

Because studies on the deaf and hard of hearing are limited, it is unclear exactly how many people within this subpopulation are living with HIV/AIDS. Research has found a continued communication gap in delivering culturally competent care to the deaf and hard of hearing, a problem that perpetuates misunderstandings about health risks and preventive practices.

• It is estimated that between 8,000 and 40,000 deaf and hard of hearing people are living with HIV in the United States.¹ This wide range is based on two limited studies, one indicating a seroprevalence rate of slightly less than 1 percent and the other finding a rate of approximately 5 percent. A Maryland study analyzing HIV test results at federally funded counseling and testing centers, which historically account for no more than 12 to 15 percent of all HIV-positive test results, yielded a 4.3 percent seropositivity rate among the deaf and hard of hearing.² 
• National AIDS surveillance data do not include information on hearing status; thus, little is known about the transmission of HIV among the deaf and hard of hearing. However, experts estimated that in 1992—12 years after the onset of the epidemic in the United States—the deaf population was about 8 years behind the hearing population in its knowledge about and awareness of HIV/AIDS.³

CRITICAL ISSUES

People with disabilities are at equal or greater risk of HIV infection than their counterparts without disabilities. People with disabilities are as sexually active as their nondisabled peers, but they are more likely to be victims of violence or rape and are less likely to obtain police intervention or legal protection when that occurs.⁴

People with physical disabilities report low rates of discussing sexuality, sexually transmitted infections, contraception, and reproductive choices with their heath care providers.⁵ A study in the Annals of Internal Medicine reported that doctor-patient communication is severely limited for the hearing impaired, leading to increased anxiety, negative perceptions of the health care system, difficulty making appointments, and medication dosing errors. Doctors too often use inadequate communication methods and do not take time to ensure that patients understand their illness as well as their prescribed medication regimen.⁶

Undergraduate deaf college students scored significantly worse on the HIV/AIDS Knowledge Index than hearing undergraduates.⁷ One reason for this knowledge gap is that most people erroneously assume that American Sign Language (ASL) and English are closely related and that most ASL users have high English proficiency. As a result, materials are often culturally inappropriate and linguistically incomprehensible. ASL is a language with no equivalent written form.⁸ It has its own grammar and syntax. ASL does not include a word for AIDS.⁹

Deaf people report a sense of inability to care for their health because many HIV education materials are incomprehensible to them. The lack of bereavement and support groups designed to meet the needs of the deaf compounds other deficiencies in the care system.⁸

Deaf gay men report feeling additionally ostracized and stigmatized for being “a minority within a minority.”⁸ According to one study, many deaf gay men believe that HIV infection is inevitable.⁸

The Deaf and Hard of Hearing and the Ryan White CARE Act

Many organizations funded through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act serve people who are deaf and hard of hearing. The Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB), which implements the CARE Act, has participated in several projects to promote improved services for this population.

The deaf and hard of hearing receive services through all CARE Act programs. ASL interpreters, who can be reimbursed using CARE Act funds, facilitate access to services.

HIV and the Deaf Population in the United States identifies and discusses major issues regarding the diagnosis and care of HIV-positive deaf and hard of hearing individuals. Copies may be obtained by contacting HAB’s Office of Science and Epidemiology at 301-443-6560.

HRSA took a leading role in the National Meeting on HIV/AIDS and the Deaf and Hard of Hearing Community. A follow-up report outlines the next steps for raising awareness of the epidemic among the deaf and hard of hearing and improving access to care. Copies may be obtained through the U.S. Department of Health and Human Services, Office on AIDS Policy, 202-690-5560

The HRSA CAREAction newsletter on HIV/AIDS among the deaf and hard of hearing is available at www.hab.hrsa.gov/publications/news.htm.