HIV TREATMENT FOR WOMEN IN UGANDA: INCREASING ACCESS THROUGH INTEGRATED SERVICE PROVISION J McGrath 1, S Rundall 1, D Kaawa-Mafigiri 1, N Kakande 2 1 Case Western Reserve University 2 Joint Clinical Research Centre Funded by: Center for AIDS Research (CFAR), Case Western Reserve University, Michael Lederman, M.D., PI (NIH grant number AI316219)

Health care seeking is a process Available health care is not necessarily accessible Women’s ability to access available care merits special attention

Study objectives Identify barriers to HIV care for women in Kampala, Uganda Identify what HIV service providers consider the primary barriers to accessing HIV care Develop recommendations to improve Ugandan women’s access to HIV treatment

Methods Interviews with 22 HIV service providers in Kampala Illness narratives from 101 HIV+ women receiving care at JCRC

Key findings Providers and patients report delays in seeking HIV testing and treatment Addressing delays will improve access to care

Providers 82% (14) of providers report that enter care too late to receive maximum benefit from treatment. 82% (14) of providers report that clients enter care too late to receive maximum benefit from treatment. Clients have very low CD4 counts or they are very sick when presenting for treatment. Clients have very low CD4 counts or they are very sick when presenting for treatment.

lack of (correct) knowledge about ARVs lack of money hesitancy to be tested fear of stigma if status is known “They do not want to be seen lining up here at the facility to get treatment.” (female, counselor) Providers’ reasons for delays

Delay 1: from suspicion of HIV to testing Delay 2: HIV+ test to treatment Women’s narratives confirm existence of delays

Fears and concerns about risks of drugs "I fear that they may have disastrous side effects which the doctors may not have known by now.” Funds “At one time I did not have any money and I spent two months without taking ARVs….” Women’s reasons for delays

Stigma, with resulting secrecy “I have never told any of my children and some close friends. I don’t trust they could keep my secret…. HIV positive people are still being stigmatized and that is one of the reasons people do not disclose.” Lack of symptoms “I knew my status in 1995 …. I came to JCRC after falling sick and getting admitted seven times in 2001.”

Two primary cues to action- delay 1 31% of the women sought testing because of the illness or death of a partner 23% of the women sought testing due to her own illness

40% reported no delays because they were sick when tested “I began falling sick in 2000 December with on and off malaria and lost weight steadily until it was so obvious that I either had HIV or something else was eating me up. Throughout 2001 I fell sick and got admitted thrice with severe malaria and diarrhea. I however delayed to test for HIV because I did not have other reason to suspect.” Primary cue to action – delay 2

For 35% of women who delayed between testing and treatment the cue to action was their symptoms. “Although my husband died of AIDS in 1993, I had never fallen sick until April … tested positive in 1994….”

Our recommendations Recognition that “Free Drugs ≠ Quality Care” (Science, 28 July 2006) reminds us that quality HIV care begins with access to quality primary health care. Integration of HIV care and treatment services with other health care services can increase women’s ability to access HIV care and treatment earlier in the HIV disease spectrum.

“Scale up” must increase access to HIV/ARV training for providers and improved integration of patient services. Future research to explore women’s treatment seeking patterns in-depth to determine how best to increase the accessibility of available care. Increasing Access through Integrated Service Provision

"I was rescued by these drugs from the pangs of death".

Acknowledgements We thank the women and the health care providers who participated in this study and the staff at the Joint Clinical Research Centre for their assistance with the study. Jude Tibemanya conducted interviews. Stephanie McClure and Margaret Winchester assisted with data entry and analysis.