No one left behind: generational transfer of knowledge as essential for universal quality treatment

In Kazakhstan, many people living with HIV waited for years to access treatment with old generation antiretrovirals (ARVs). These medicines have more side effects than newer ARVs.  Kazakhstan has introduced newer, better ARVs, but prices are still too high – these medicines need to be affordable so that the country can scale-up to meet its needs. Currently, 27,000 (78%) of the 35,000 people living with HIV know their status and 20,000 of them are receiving antiretrovirals (ARVs). 

Lyudmila and her daughter tested positive for HIV in 2008.

“The news shocked me. I was scared for myself and for my daughter, [who] had a high viral load and was immediately prescribed treatment. For five years it was hard for me to accept my status. I started my treatment, and this also played a role on making it become easier. I told my future husband about my status on our second date. We got married five years ago.”

Lyudmila is the Executive Director of Equal to Equal, a community-based organization, and she coordinates the Teenergizer movement in Kazakhstan.

“I wanted to help children living with this status. When my daughter was 8 years old, I thought about how to give her the necessary information. It is important to communicate HIV information to the younger generation. It is important to receive treatment

© Didar Kushamanov/Majority World/Make Medicines Affordable/2021

and that everyone receives quality treatment in Kazakhstan.”

Venera has three sons. She lives in Almaty, Kazakhstan. She was diagnosed with HIV in 2006, and tuberculosis (TB) in 2008.

“People had a fear of getting infected [with TB]. Everybody turned their backs on me.”

© Didar Kushamanov/Majority World/Make Medicines Affordable/2021

A year later, she was pregnant and had a TB relapse. The doctors told her they could not treat her unless she had an abortion.

“The nurses did not come up to me. I think because I am living with HIV there was a bad attitude towards me. They did not want to give me anesthesia. It was only given to me after I had to ask for it.”

Six months after she was cured from TB, a nurse came, asking, “Where does Venera live, the one with TB?” The news reached her son’s school, threatening her parental rights. “Thankfully the akimat (local government) said they would not do that, but it really was very difficult for me during that period.”

Venera started HIV treatment in 2011, with old generation ARVs.

“I had bad side-effects and refused to continue with the therapy. In 2012, I was pregnant with twins and decided to take therapy on an ongoing basis because I was afraid for the children. After the birth of twins, my side-effects continued, with the liver and stomach. In 2018, my therapy was changed. I felt dramatically worse. After two weeks, it was changed again, now I remain on the treatment which works for me, Tenofovirum plus Emtricitabinum/Dolutegravir. I am cured of TB, and I have been taking HIV treatment regularly since 2012. At first, I was very afraid to communicate with people. I was helped through visits to the AIDS center. Now I work for an NGO with TB patients. I like helping people, informing them. Many are unaware of their rights. When a person is not afraid, when they know their rights, life becomes easier for them.”

There is still a long way to go in the tough journey against HIV stigma. Nonetheless, these stories show that cross-generation transfer of knowledge is a necessity not only to keep the issue alive (hence not neglected or ignored), but also to not forget the basic idea that quality treatment should be for all, and lastly but not less important: to fulfill this human need to tell stories.

“Keeping these stories alive is also a way to keep people alive. No one left behind.”