International donor support is withdrawing from Kyrgyzstan.
To avoid the country to struggle, the only sustainable way forward is abolishing IP on meds, especially essential life-saving treatments.
Our campaign partner in Kyrgyzstan, the Partnership Association, is focused on lowering the price of essential medicines and increasing access to optimal treatment for HIV, Hep C and TB.
The Partnership Association played a leading role in developing a roadmap for the transition of the HIV programme to national funding. As a result, tackling barriers to treatment has been included in the roadmap, and the HIV and Hep C treatment guidelines were updated. New HIV drugs, including dolutegravir, darunavir, atazanavir, have been included in the list of essential medicines.
Dolutegravir is available in the country and Kyrgyzstan purchases a combination of TLD (a three-in-one, fixed-dose combination that includes dolutegravir, lamivudine, and tenofovir disoproxil fumarate). The national regulation on monopolies, however, is very poor and it is an open door for medicines over-costing.
Baktygul Israilova, 48, was diagnosed with HIV more than 10 years ago, when she was pregnant with her second child.
Her first thought was “… that’s it, life is over. I won’t have time to see my daughter grow”. After her older daughter asked her for help with her schoolwork, Baktygul realized that she “…had no right to give up. I must live for her and the child I was already carrying.” She now lives with her two daughters.
Now, Baktygul has become an expert on HIV-related issues and runs an organization in Kyrgyzstan that focuses on helping women with HIV in rural areas.
“My knowledge and my experience are very helpful in this situation… three years ago these women were afraid of their shadows. I remember how they cried.” She tells them, “These are your pills, and this is your salvation no matter what.”
Currently, ARVs are accessible to people living with HIV, because the Global Fund pays for them, but international donors plan to phase out; domestic funding will be needed for HIV treatment and other important medicines. Baktygul and other experts and local NGOs are advocating for the government to take responsibility for people living with HIV by starting to procure ARVS. She notes:
“There is a decrease in donor funding. Donors will go away slowly; this is called a transition period. It is possible that we will be buying these drugs ourselves, but they are not on the market in Kyrgyzstan, because they have not yet been registered.”
Sardar from Osh was diagnosed with HIV over six years ago, while imprisoned in Russia.
“I had no idea what HIV was… I said to doctors: ‘Why should I be treated? I’m a healthy person. Why are you lying to me?’ And I left. Then I started having problems, I thought it was nothing and it would go away.”
In 2014, Sardar was deported to Kyrgyzstan. He nearly died, but with the help of doctors and HIV treatment activists in Kyrgyzstan, he received ARVs and got well.
“At that time, ARVs consisted of three pills, and I had dizziness and nausea. Now it is only one pill (TLD) with no side effects.”
Now Sardar works at Plus Center, an organization in Osh which helps people diagnosed with HIV to get treatment and ARVs. Sardar works mostly with children living with HIV and their parents.
“When there is a child diagnosed with HIV for the first time, doctors call me. Usually, they tell children that they have to take medicine for the rest of their lives. I correct doctors: ‘You will take it until there is a cure’. Teenagers living with HIV have in their minds that they should get married only to a person with HIV. I look at them and say: ‘Are you from some other planet? Who told you such things?’ They say that doctors say that they should not get married. I start explaining that you can get married to any person and have healthy children. But a viral load of both must be zero.”
During lockdown, Sardar was delivering medicine to other people living with HIV.
“I filled up my car with gasoline with my own money and delivered medicines.”
Sabina Anarbaeva, 35, was diagnosed with HIV five years ago.
She attempted suicide several times after discovering her status, until she accepted it.
“Acceptance doesn’t happen in the first 20 minutes, it doesn’t happen in the first 2-3 days and not in 2-3 weeks, believe me. It comes much later… you will have to survive, and it is important to have someone by your side. I was and still am supported by my spouse, whom I married after I revealed my status, and by my mother and my older sister”.
Sabina started her HIV treatment with ARVs that had severe side effects. Her mother, who has a medical background, consulted with Sabina’s doctor, who switched her treatment.
“Efavirenz is contraindicated and I was switched to another regimen. That one that didn’t work for me neither, it was toxic and it was affecting my liver. Now I have a TLD regimen and have been taking it for about a year and a half and feel as good as I can.”
Now Sabina works as an expert on HIV-related issues and focuses on helping women live with their diagnosis.
“I work with women because what a woman can’t say to a male doctor or activist, she will say to a woman. So, it is always ‘easier between ‘us girls.’ I’m not the only one, we have a lot of women activists.”
Until recently, Sabina had no troubles with access to medicine. A few days ago, she was given a new regimen without her knowledge.
“A doctor explained that ARVs are available, but in extremely limited quantities. The borders were closed due to the pandemic, or there is a problem with insufficient procurement because manufacturers refuse to bring them at the same price“.
Sabina was promised that her previous regimen would be available again in in a few months.
“I do not want to complain for now. I really hope that I won’t have any unwanted side effects. And I really hope that the test results after taking these new drugs will be good”
Umid Shukurov, 46, learned that he had HIV, hepatitis C and tuberculosis over 10 years ago, when his wife, Baktygul, was diagnosed with HIV.
When he learned his status, Umid refused help from HIV treatment activists and doctors, because he felt uncomfortable.
“I refused treatment and food – for me it was like a handout. ‘You take the pills, eat them, don’t die’. Later doctors explained that food helped with taking treatment.”
Now, Umid is a HIV treatment activist who runs Believe in Yourself, an organization which helps to protect the rights of people with HIV, hepatitis C and tuberculosis. He uses his experience to persuade people with different diagnoses to take pills.
“I have realized that there are people who don’t understand help and why other people care about them… but getting help with food stops you from being hungry, so you can take your medication”, he says.
Umid says that medicines are available, but doctors do not explain much about side effects of drugs or regimen. Umid was taking one dolutegravir-based pill per day for HIV, and did not have any side effects, but recently he was prescribed other medicines — two pills a day — and he worries about side effects.
“When I asked my doctor why she didn’t give me my medicine, she answered that they didn’t have time to procure it. If the drug is not available or the state has not procured it, they should warn doctors in advance so they explain to patients what the side effects may be. Treatment 100 percent depends on the information a person has received. He should understand that his life depends on treatment”.
Since 1998, Evgeniy Milukov, 47, has been imprisoned several times for drug use. In 2011, he was diagnosed with HIV, hepatitis C and tuberculosis (TB), which became a turning point in his life — he began taking his health seriously.
“I would say: ‘Every cloud has a silver lining’. On the one hand it helped me somehow. I got hired because I have HIV. You do not know whether to laugh or cry.”
Evgeniy now works with people who were diagnosed with different conditions (HIV, tuberculosis), and began treatment while they were serving their sentences, and need to continue taking medicines. There were no problems with access to medicine during the lockdown, because people got a four month supply, but he worries about how people living with HIV, hepatitis C and TB will continue to get their treatment when the state takes over from the Global Fund,
“Everything is better here, in Kyrgyzstan, in terms of treatment. Even without documents we manage to help a person if they have HIV…. even if they are a citizen of another country. As long as they are in Kyrgyzstan, we are ready to help them. Maybe it is because it is not funded by the state, but by Global Fund. I don’t know how it will turn out now, of course we have concerns that it will get worse.”
Ali Ragimov, 43, was diagnosed with HIV more than 12 years ago while he was in prison. He stopped using drugs, and when he was released, Ali began working at Plus Center, an Osh-based organization helping people get treatment for HIV/AIDS and tuberculosis (TB).
The organization opened a rehabilitation center, which Ali says was “…built by our guys, everything with their own hands: materials, welding, plastering, wallpapers. We didn’t hire anyone, because everyone has a talent.”
Ali has experienced stigma several times,
“The stigma appeared when I started using drugs, because they called me a ‘drug addict’. I was in jail for those drugs, so I got another stigma: ‘convict’.” Then there was an infection. Plus, TB. He thinks that it is important for not to indulge in self-pity and not to be afraid. “HIV does not choose people by their race, age, or social status.” Ali adds, “There is therapy. You can live. You can enjoy meals together, shower, have sex with condoms. Just follow precautions.”
Ali is satisfied with access to ARVs:
“When there were old regimens, people living with HIV had to wait until their immune systems began failing get ARVs. Many people who were denied treatment have died,” he says. Now he takes one dolutegravir-based combined pill (TLD) per day. “People who receive ARVs now do not know what side effects are, because they take TLD.”