what are the concerns?

what are the concerns?

Public health messages have traditionally urged disclosure to all sexual and drug using partners. In reality, disclosure is complex and difficult. Some HIV+ persons may fear that disclosure will bring partner or familial rejection, limit sexual opportunities, reduce access to drugs of addiction or increase risk for physical and sexual violence. Because of this, some HIV+ persons choose not to disclose. Programs need to accept that not disclosing is a valid option.

Many HIV service agencies and testing and counseling sites routinely offer self disclosure and dual disclosure, working with HIV+ clients by preparing and supporting them to disclose to partners on their own.

Although provider disclosure services have been used for many years with other STDs, there is a wide variety in rates of acceptance of provider disclosure in HIV: in North Carolina, 87% of newly diagnosed HIV+ persons accepted provider disclosure,8 in Florida 63.1%,9 Los Angeles, CA 60%,10 New York State 32.9%,11 Seattle, WA 32%12 and among anonymous testers in San Francisco, CA 3.1%.13 In Los Angeles, the most common reasons for refusal were: already notified partner (23.4%), not being ready to disclose (15.3%), being abstinent (15%) and having an anonymous partner (11%).10

Disclosing HIV status to partners can be scary, but also can be empowering. In one study, HIV+ injection drug users who disclosed their status found increased social support and intimacy with partners, reaffirmation of their sense of self and the chance to share experiences and feelings with sexual partners.14 Another study of HIV+ persons and their partners who received disclosure assistance found that emotional abuse and physical violence decreased significantly after notification.15

what’s being done?

Florida utilizes trained DISs to deliver disclosure assistance for all reported new HIV infections. In 2004, 63.1% of all newly infected HIV+ persons accepted provider disclosure, identifying 4,460 sex or needle-sharing partners. Among those, 21.8% had previously tested HIV+. Of the 2,518 persons notified, 84.2% agreed to counseling and testing and 11.5% were HIV+.9

The Massachusetts Department of Public Health piloted a client-centered model of disclosure assistance that is integrated into the client’s routine prevention, care and support services. The program required significant changes to the standard model of DIS provider disclosure, building close relationships between service providers and DIS to better support clients’ disclosure needs while protecting confidentiality.16

California instituted a voluntary disclosure assistance program that includes counseling and preparing HIV+ persons for self disclosure; anonymous third party provider notification; counseling, testing and referrals for notified partners; and training and technical assistance to providers in public and private medical sites. About one-third of patients opted for provider disclosure and 85% referred partners. Of the partners located, 56% tested for HIV and half had never tested before. Overall, 18% of partners tested HIV+.4

what needs to be done?

New HIV testing technologies can be useful with disclosure assistance services. Improved rapid testing is a potential invaluable tool for offering HIV tests in the field to notified partners. Nucleic acid amplification testing (NAAT) can determine acute infections, that is, new HIV infections that do not show up during the window period of other HIV tests. Combining these testing strategies with disclosure assistance can help identify newly infected persons and provide immediate counseling, support and referrals to medical or social services as needed.17

Disclosure assistance services, and particularly provider disclosure, may need extensive changes from the traditional DIS model in order to work well and be accepted within HIV services. Health departments could forge closer ties between their STD and HIV programs and with outside service agencies. HIV staff also can be trained to be DIS providers to broaden access to and comfort with disclosure services.

Disclosure assistance services should be made available not only upon HIV diagnosis, but on an ongoing basis as HIV+ persons’ circumstances and needs change. It is not the role of providers to decide if a client will need or want disclosure assistance, but to offer clients support and choices, whether or not a client chooses to disclose.