In the framework of the Global Fund to fight AIDS, Tuberculosis and Malaria grant, the UNDP works with several NGOs to improve access to prevention and treatment of HIV and TB and protect patients’ rights. Aibar Sultangaziev, director of the association for harms reduction “Partners Network”, tells in this interview about the importance of advocacy in the fights against TB and HIV epidemics in Kyrgyzstan.
Can you tell us about the work of your organization under the UNDP / Global Fund project?
Our association regroups 26 organizations which work in the HIV and TB fields. We have three main missions: first, to increase access to treatment and prevention of infectious diseases, including TB and HIV; second, to encourage sustainability and increase government funding; and third, to defend the rights of key population groups and patients. We work with the parliament, government, ministries, international organizations, societies, communities, NGOs, and health institutions to advocate and lobby for positive changes in the health sector.
We try to promote laws in favor of patients and ensure they are applied. We help register drugs, work with pharmaceutical companies and monitor the purchase of medication to achieve lower prices and save money for other activities. We try to reduce corruption within the health system and make sure services are correctly delivered to clients.
Actually, the Global Fund grant is one of the only financial sources in the country for advocacy and community engagement. I want to highlight the work of the current UNDP team, which is very sensitive and reacts fast to requests from the country and the community. Together we work very constructively to respond to the population’s needs.
What does advocacy mean for you?
I remember a training where I was told that advocacy means convincing policy-makers at all costs, almost pleading them to do what they should. But I completely disagree: policy-makers are here to serve the people. We need to change this situation and make the system accountable; turn it into a citizen needs-based system.
Advocacy is here to ensure that laws work and that they are in the benefit of the people. The goal is to help people to live with a sense of dignity and receive the services they are entitled to. It’s a process that improves lives. It’s the belief that you can change something. And sometimes advocacy is confrontation, it’s not always easy.
What have you achieved in the TB field?
We started working in the tuberculosis field only recently. We did a lot of advocacy and next year we should finally open a shelter for patients with tuberculosis and have several organizations working to help patients, for example through case management. It’s a great victory because the TB field didn’t let us in at first.
Actually, we had the same problem in the HIV field two decades ago. Health care workers aren’t always eager to let the community intervene. They rarely explain to patients what drugs they have to take or give them clear enough information on tuberculosis. We’re here to educate patients, to tell them their rights and to defend them if necessary. We’re here to make the health system more accountable.
But we’re also here to help health care workers, support them, provide them with the best conditions to do their job and have their salaries increased, because we understand that no one will work well for such a low wage. So it’s a win-win relationship.
We conducted surveys among TB patients and found a lot of facts of discrimination and corruption, for example patients said they had to pay for staying in the hospital, to receive new TB drugs, etc. Our goal is to make the TB field more sustainable and accountable: this means registering drugs, increasing government funding, negotiating with pharmaceutical companies, answering to patients’ needs… For example, now we are filing a claim against Johnson & Johnson to dispute their patent on Bedaquiline and, hopefully, allow other companies to produce this drug at a reduced price.
What other results can you highlight?
We have worked a lot on digital tools to improve patients’ and clients’ rights. Currently with the Global Fund/ UNDP and UNAIDS, we are developing a great application for people living with HIV and key population groups that is, I believe, unique in the world, because it takes into account their needs and requests.
We also introduced an electronic system to register rights violations, called REACT. We document every case of rights violation among patients and key population groups and then we will bring them to the attention of decision-makers.
Can you give us examples of rights violations?
We registered 263 cases of rights violation among key population groups on our platform between January and August 2020.
During the Covid-19 pandemic, we noted an increase in rights violation. People who inject drugs had difficulties getting to medical centers to receive services like substitute methadone therapy. Women with HIV faced increased violence and abuse at home, not only during the lockdown but even now, because of elevated stress and problems in our society. Sex workers had very difficult financial situations: they were left with no jobs and couldn’t feed their children.
For example, one man tried to get methadone treatment during the lockdown, but the police officers didn’t let him through the roadblock. They told him that without the special permit he couldn’t go anywhere and he should go back home and stay there. He showed them his medical records and tried to explain how important it was for his health, but they refused to let him go to the hospital. This was very difficult for him because he suffered from withdrawal syndrome and pains.
A transgender sex-worker reported that she scheduled a meeting with a client, but he came with four other people and they broke into the apartment, beat her up, and stole her phone and money.
A man living with HIV declared that upon walking home from work late at night, he was forced into a car, handcuffed and beaten. Then his aggressors put drugs in his pocket and brought him to a crime scene to try to blame here for a burglary he had nothing to do with.
People from key population groups are extremely vulnerable to abuse and rights violations like these. And often, these violations are done by officials - policemen, doctors, etc, - people from whom they receive services, so it is even harder for them to complain.
How have you adapted your activities to the Covid-19 pandemic?
We regularly conduct surveys among patients and key population groups to know what their needs are and adapt programs. Of course Covid-19 changed a lot of our plans and we had to postpone many events. The health system is focused on its response to Covid-19 and we understand that.
Because of Covid-19 less people get medical help. People are scared and the medical system itself is on hold. Health care workers are either in the red zone, or sick, or resting. Many have psychological traumas after Covid-19.
The Global Fund and the UNDP purchased medical equipment and PPE, reallocated funds and together we applied for an additional Covid-19 grant. One of our initiatives was to give out treatment for TB and HIV for longer periods of time, and we also started delivering medication to around 300 people living with HIV abroad. We advocated for the deployment of mobile brigades to care for patients at their home, and additional case management for tuberculosis. With these efforts, we were able to ensure non-interruption of services to clients.
How can we ensure Covid-19 doesn’t negatively impact the fights against HIV and TB?
People forgot about a lot because of Covid-19 and we are all in a strange situation, where we cannot predict the future or make plans. Because of the new pandemic, we have already gone several years back in our progress, especially in the TB field. But HIV and TB won’t let themselves be forgotten.
Now it’s important to restore the health system and rehabilitate health care workers so that they can come back to their normal work regime and help patients. We need strong managers to pull the system back together.
An important step to take is to increase testing and diagnostic for TB and HIV. Because if a person is sick but is not aware of their status, they can’t take treatment and strengthen their immune system, in which case they are also at high risk of developing serious forms of Covid-19.
The HIV system proved to be the readiest of all health care systems because there are many NGOs already working with clients, permanent shelters, community support, etc. Now we need to build the same system in the TB field.