What an amazing day Wednesday was!
We began by visiting Sandra Kiapi at the office of Action Group for Health, Human Rights, and HIV/AIDS (AGHA). AGHA is a NGO that was founded in 2003. They have several advocacy campaigns and community-based research projects that tackle human rights issues as they relate to health, with a specific focus on HIV/AIDS. One of these is the Stop Stock-Outs Campaign. AGHA also continues to promote accountability and transparency in the spending of PEPFAR and Global Fund monies, which has been difficult since the local culture has been to keep budget information away from the public eye.
Sandra had a lot to say about the HIV/AIDS Bill, which currently is in Parliament. She described loop holes, and she said the bill really needed more compelling language to ensure that states provide drugs. The public already pays 30% taxes, and most of them have no other disposable income to afford private healthcare. 30% of Ugandans receive healthcare through religious NGOs. 2-10% of Ugandans receive private healthcare. The other 60% need state assistance—yet the current bill has no provisions for their health services.
I was really excited to talk to Rose, Patricia and Ruth at the Uganda Human Rights Commission, a quasi-governmental body which was established under the Ugandan constitution in 1995. At the beginning, their biggest focus was bringing justice to victims of torture and upholding the rule of law. UHRC also tries to promote the Right to Health by educating both government officials through seminars and the general public through public radio. AGHA and UHRC have worked together on AGHA’s Stigma and Discrimination Campaign, for which AGHA trains health professionals and health professional students on health and human rights. Some of the students we’ll be meeting in the next few days, leaders in the Students for Equity in Health Care (SEHC), have been active in helping with this work. UHRC and AGHA both work on advocating for health workforce rights on many levels. Currently, there is only 1 health care worker per 22,000 Ugandan people.
UHRC also works on transitional justice and reconciliation, as well as reintegration of LRA child soldiers—all issues that have been incredibly trying for both the Commission and nation in general. I highly recommend watching Uganda Rising and Invisible Children on these issues.
We also met on Wednesday with Julia Spiegel from the ENOUGH Project, a program of the Center for American Progress with a mission to build a permanent constituency to prevent genocide and crimes against humanity. She’s been working directly with victims, military and officials in Northern Uganda and the Congo and has been using insight from her research to advocate for high level policy and holistic action to end the LRA’s crimes against women, children and the region in general. Check out the ENOUGH Project’s Raise Hope for the Congo campaign. For all you Law and Order fans, the Project also helped write a new episode that tells survivors’ stories to educate the public and humanize the issue.
We ended by meeting a physician-advocate who does not wait but acts, even when funds or resources are unavailable. He is one of the world’s most inspirational pioneers in providing HIV/AIDS treatment for all, Peter Mugyenyi, MD. He was the first person to bring ARV treatment to Africa, and he was involved in the initial planning of PEPFAR. He is the director of the Joint Clinical Research Centre (JCRC), one of the largest PEPFAR funded programs in all of Africa.
The JCRC provides HIV care and treatment to over 60,000 patients in both urban and rural Uganda. About twenty percent of these patients are enrolled in the clinical research at the center. JCRC is the smoothest-running, most high-tech clinical, epidemiological and treatment-based research center we had ever seen. It was the first center to test an HIV vaccine in 1998, and the lab continues to study HIV and opportunistic infections in novel ways. Dr. Mugyenyi has about 1,000 patients under his personal care, and he also is Principal Investigator to seven research projects at the institution. He continues to maintain and enroll patients that need care, despite a Uganda PEPFAR mandate to halt the treatment of new patients.
Meeting with activists from these organizations gave me a lot to think about and process. These organizations deal with tremendous obstacles in creating sustainable change and fighting for the rights of people that are often poor and powerless. Yet, they trudge on, knowing that, though change does not come over night, progress does. These are not people that will wait for better conditions to begin fighting for human rights. They just do it.
(Cross-posted on Health Rights Advocate)