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: July 25, 2022
Welcome to the namati.org website (the “Site”) and the Legal Empowerment Network Forum (the “Forum”) operated by Namati, Inc., a Delaware corporation (“Namati”, “we”, “us” or “our”). We share your concern about the protection of your personal information online.
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 and our service providers have entered into contracts with us that restrict what they can do with your personal information. If you would like specific information about our service providers who have received your information, please contact us at firstname.lastname@example.org and we will provide that information to you.
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:
Used widely by Microsoft as a unique user ID. The cookie enables user tracking by synchronizing the ID across many Microsoft domains.
Privacy notice: https://privacy.microsoft.com/en-us/privacystatement
Provides cloud servers for hosting the Site.
Privacy notice: https://www.godaddy.com/en-in/legal/agreements/privacy-policy
Registers statistical data on users’ behavior on the website. Used for internal analytics by the website operator.
Privacy notice: https://www.npr.org/about-npr/179878450/privacy-policy
Analytics service for analyzing traffic patterns and carrying out surveys.
Privacy notice: https://www.scorecardresearch.com/privacy.aspx?newlanguage=1
Maintain settings in embedded video.
Privacy notice: https://www.ted.com/about/our-organization/our-policies-terms/privacy-policy
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. Any financial records will be kept in accordance with Namati’s data retention policy.
Your Information is stored on Digital Ocean servers in New York, USA, and WPengine servers located in Texas, USA. When you provide personal information to us, we request your consent to transfer that personal information to the USA. The USA does not have an adequacy decision from the European Commission, which means that the Commission has not determined that the laws of the USA provide adequate protection for personal information. Although the laws of the USA do not provide legal protection that is equivalent to the EU GDPR, we safeguard your personal information by treating it in accordance with this Policy. We take appropriate steps to protect your privacy and implement reasonable security measures to protect your personal information in storage. We use secure transmission methods to collect personal data through our website. We also enter into contracts with our data processors that require them to treat personal information in a manner that is consistent with this Policy.
We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorized way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.
We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.
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 Resource Library, 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 information regarding important developments affecting Namati. We may also email users on occasion regarding the Site. Such emails may be sent to users of the Site if they have given their consent previously or if they have requested information from us or acquired goods or services from us in the past and have not opted out of receiving marketing communications. You can ask us to stop sending you marketing messages at any time by (i) logging into the website and checking or unchecking relevant boxes to adjust your marketing preferences; or (ii) by following the opt-out links on any marketing message sent to you; or (iii) by contacting us at any time. You may choose to unsubscribe from future emails by using the unsubscribe link included in all mass email correspondence from Namati.
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.
Namati is concerned about the privacy protection of children who access the Internet and this website is not intended for children and we do not knowingly collect data relating to children. Accordingly, the Site and Forum are not intended for use by anyone under the age of 16, and we do not knowingly collect information from anyone under 16 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 may be filed:
The section titles in this Policy are for convenience only and have no legal or contractual effect. The Site, the Learning 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. Historic versions can be obtained by contacting us at email@example.com.
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
It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes during your relationship with us.
You have the right to:
Request access to your personal data (commonly known as a “data subject access request”). This enables you to receive a copy of the personal data we hold about you and to check that we are lawfully processing it.
Request correction of the personal data that we hold about you. This enables you to have any incomplete or inaccurate data we hold about you corrected, though we may need to verify the accuracy of the new data you provide to us.
Request erasure of your personal data. This enables you to ask us to delete or remove personal data where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal data where you have successfully exercised your right to object to processing (see below), where we may have processed your information unlawfully or where we are required to erase your personal data to comply with local law. Note, however, that we may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.
Object to processing of your personal data where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground as you feel it has an impact on your fundamental rights and freedoms. You also have the right to object where we are processing your personal data for direct marketing purposes. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which override your rights and freedoms.
Request restriction of processing of your personal data. This enables you to ask us to suspend the processing of your personal data in the following scenarios:
Request the transfer of your personal data to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.
Withdraw consent at any time where we are relying on consent to process your personal data. However, this will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, we may not be able to provide certain products or services to you. We will advise you if this is the case at the time you withdraw your consent.
You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we could refuse to comply with your request in these circumstances.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.
We try to respond to all legitimate requests within one month. Occasionally it could take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.
If you live in an EEA Member State, all of which have adopted the EU GDPR and national , you have a right to lodge a complaint with your relevant supervisory authority about this policy and its application. The European Commission has a list of EU national data protection authorities here:
If you live in the United Kingdom, you have a right to lodge a complaint with your relevant supervisory authority, the ICO, about this policy and its application:
The Policy was updated in July 2022 to comply with the General Data Protection Regulations.