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.”
Last updated January 30, 2013.
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Last updated: May 25, 2018
This Policy describes our privacy practices and sets out your obligations and ours with respect to your use of the Site and the Forum. This Policy applies only to the Site and the Forum and does not necessarily apply to our offline collection of information.
Namati may collect and retain two types of information about Site and Forum visitors: (i) personal information that individual visitors voluntarily provide when interacting on the Site or Forum or on certain other occasions (such as via forms or in emails); and (ii) tracking data, which is data that is automatically collected from every Site and Forum visitor as they use and browse the site.
We may, from time to time, store and archive the information you submit to or through the Site and Forum. The information that we gather may include your name, title, and address, telephone number, email address, credit card number or other elements of personal information. In addition, if you contact us, we may keep a record of your correspondence, including any information contained therein.
You may decline to provide any personal information, but please realize that you thereby may be unable to register or to participate in activities or services offered on the Site and/or Forum.
In addition to the information you submit to or through the Site and Forum, we also may collect and store data from and about you gathered in the course of your use of the Site and Forum. We call this “tracking data.”
Such tracking data may include, but is not limited to, information regarding the number and frequency of visits to the Site and Forum, the websites that you access before and after you visit the Site and Forum, the software and operating system used to access the Site and Forum, and your IP address and Internet service provider.
Our use of your Information involves various forms of communication with you, including:
We will not disclose any personal information to third parties, except:
Information provided to third parties is limited to the information needed to perform their functions. We seek to limit third-party use of information; however, we are not responsible for such third-party use of information.
We retain the right to transfer or assign all information pursuant to a merger, purchase or other transaction relating to Namati or our assets.
The current list of third-party service providers we use include:
Personal information you submit via your member account, other than information provided or content posted by you to public areas of the Site as described below, is deleted from Namati’s records following the deletion of your account. However, such information may continue to be retained by third-party service providers to which it has been disclosed for one of the reasons listed above.
Your Information is stored on Digital Ocean servers in New York, USA.
We take reasonable precautions to protect your information from loss, misuse or alteration. You should recognize, however, that there is no such thing as “perfect security” on the Internet, and we cannot guarantee the security of your information. In addition, because Internet communications are unsecure, it is also possible that the information you supply to us or your access of any information via the Site will be intercepted during transmission. We are not liable for any breach of our systems or interception of our transmission, and we hereby fully disclaim, to the fullest extent possible under law, any liability associated with any claim relating to a breach of security, data or information.
You should be aware that any information provided or content posted by you to public areas of the Site, including but not limited to interactions on the Site and information posted to the Member Directory (via your profile), the Tools Database and the Forum, may be read, collected or used by other visitors of the Site, who may not need to log in as a member to view the information. Namati is not responsible for the third-party use of any information provided in such manner. By participating in the use of the Site’s interactive features, you consent to Namati’s use or disclosure of any content that you submit. For more information on posting content, please see our Terms.
The Forum uses data about your posts and other activity to make automated decisions about whether your posts are spam.
The Forum may also use data about your posts and activity to award you badges and calculate a trust level for your account. Your trust level may affect how you can participate in the Forum, such as whether you can upload images, as well as give you access to moderation and management powers in the Forum. Your trust level, therefore, reflects Forum administrators’ confidence in you, and their willingness to delegate community management functions, like moderation.
From time to time, we may email users of the Site or the Forum information regarding important developments affecting Namati and/or the Global Legal Empowerment Network. We may also email users on occasion regarding the Site or the Forum. Such emails may be sent to users of the Site or Forum even if they have not requested to receive any communication from us.
You may choose to unsubscribe from future emails by using the unsubscribe link included in all mass email correspondence from Namati and the Global Legal Empowerment Network.
If a user elects to use our referral service to inform a friend about the Site and Forum, we request the name and email address of the friend. Namati will automatically send the friend a one-time email inviting the friend to visit the Site. Namati stores this information for the sole purpose of sending this one-time email, and, while a third-party mail service provider may retain the information in its database, no additional emails will be sent by Namati without further action by the friend.
Because Namati is concerned about the privacy protection of children who access the Internet, we comply with the Children’s Online Privacy Protection Act (COPPA). Accordingly, the Site and Forum are not intended for use by anyone under the age of 13, and we do not knowingly collect information from anyone under 13 years of age without the consent of a parent or guardian.
We reserve the right to disclose any information to comply with any law, regulation, decree, judgment, order, subpoena or any other governmental order (“Order”) without any obligation to contest or verify the accuracy of such Order.
This Policy will be governed by and construed in accordance with the laws of the State of New York, without regard to any principles of conflicts of law. You agree that any action at law or in equity that arises out of or relates to any use of the Site will be filed only in the state or federal courts located in New York County, and you hereby consent and submit to the personal jurisdiction of such courts for the purposes of litigating any such action.
The section titles in this Policy are for convenience only and have no legal or contractual effect.
The Site, the Forum, and any third party services they use, may be subject to additional terms and conditions regarding privacy and use of information. Your use of the Site and the Forum is subject to those terms and conditions, which are incorporated into this Policy by reference. In the event of an inconsistency between this Policy and any additional posted conditions, the provisions of the additional conditions shall control.
We may need to change the Policy from time to time in order to address new issues and to reflect changes on the Site or in the law. We reserve the right to revise or make any changes to the Policy, and your continued use of the Site subsequent to any changes to this Policy will mean that you agree to and accept such changes. You can tell if the Policy has been updated by checking the last revised date posted on the top of this page.
You can also access, remove, update or correct your information, and raise any questions or concerns regarding the Site or the Policy, by emailing firstname.lastname@example.org, or mailing:
Namati Data Protection Officer
1616 P Street NW, Suite 101
Washington, DC 20036, USA
If you live in a country which has adopted the General Data Protection Regulation (EU; 2016/679), you have a right to lodge a complaint with your relevant supervisory authority about this policy and its application.
The Policy was updated in May 2018 to comply with the General Data Protection Regulations.