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It was at the end of 2017 that Silvia* first noticed the sores on her skin. Over the coming months, they got worse. She developed a persistent fever and was constantly exhausted. By March, her weight had dropped from 85 kgs to 70.
Silvia knew what the symptoms suggested; she knew she should get an HIV test, but she hesitated. “I knew the test was going to be positive,” Silvia explains, “but I was afraid to get the results.” After much deliberation, she gathered her courage and went to her local clinic.
When she was called into the testing room, she was unnerved to find a number of other people there, sorting through files. “In that moment, I entered into a state of panic,” recalls Silvia. “I didn’t want these other people to know my status.” She left without getting the test. Coincidentally, a neighbor of Silvia’s entered the room right after her. She too said that she didn’t feel comfortable due to the lack of privacy and left.
“…I entered into a state of panic. I didn’t want these other people to know my status.”
The following morning, Silvia decided to return to the health center to speak to the village health committee (VHC). She had seen them there before, talking to groups of people in the waiting area about patient rights, but she had never had any direct contact with them.
When she arrived, several members of the VHC and a Namati community paralegal named Eni were giving an educational talk about malaria. When the session ended, she approached them and told them about her experience. They documented her complaint and asked for her contact details.
The issue Silvia raised was not entirely new to the committee. In late 2016, with support from Namati, they had conducted the first of their bi-annual health facility assessments and the community had noted the lack of privacy in the HIV testing and counseling sector. The head of the health facility had explained that with only five rooms in the entire center, there was nowhere else to keep the medical records. They decided to address the issue by allocating a small folding screen to divide the room. But Silvia’s complaint made it clear that this solution was insufficient: the screen did not offer any real visual or sound privacy. Something else had to be done.
Within a few days, the VHC had arranged a meeting with the staff member responsible for the counseling and testing sector and called Silvia to ask her to participate.
Silvia and the VHC members shared their concern over the violation of patient privacy with the sector head who acknowledged it but said she did not have the power to address it. The problem would have to be taken up with the Clinical Director, who was on vacation but would return in a few days.
One week later, two members of the village health committee; Eni, the community paralegal; and Silvia met with the Clinical Director. Again, Silvia shared her story. The Clinical Director was sympathetic and said that were she be in the same situation, she would not feel comfortable proceeding with the test either. But, she added, she couldn’t see any alternative. There was simply not enough space at the small health center.
Silvia left the meeting thinking that she had no alternative but to travel to the district capital to take the test in private. This, however, would mean taking two chapas [minibuses] each way. “At the time, it wasn’t possible,” says Silvia. “I didn’t have enough money to pay for transport.”
Several weeks after the meeting with the Clinical Director, Silvia received a call from one of the village health committee members. The VHC member told her that the director had raised the privacy issue at the meeting of the health facility co-management committee (a group composed of health center leadership and staff, as well as village health committee members representing the community). The committee brainstormed ideas and determined that if the small storage room off of the reception area was cleared out, it could fit a table, a couple of chairs, and the basic materials needed for HIV testing and counseling. Within four days, the new room was ready.
“With these improvements at the health center,
a lot of people are now getting tested.”
“I was happy and relieved,” Silvia says of hearing the good news. “I really didn’t believe that they were going to resolve the problem.”
Silvia returned to the clinic and was tested for HIV—in private. Her results, as she had expected, came back positive. She was immediately referred for anti-retroviral treatment. “Now I am doing very well,” says Silvia. And on top of that, she adds, “With these improvements at the health center, a lot of people are now getting tested.”
In the months that followed the resolution of her case, Silvia has become an active advocate for the village health committee. In October 2018, she shared her story in front of 150 people at a national health forum hosted by Namati. As she says, “the village health committee is really the link between the community and the health facility…I now know that each one of us has rights that must be respected.”