A report from one of our members, the NGO ‘Towards a Future without Tuberculosis’

A man sits at his desk and looks at the camera. He is dressed in a suit. As in all democracies, people and their problems – both on a personal and societal level – constitute one of the main elements of a society. However, people suffering from diseases consider themselves outcasts from the rest of humanity during the course of their illness.  During the course of my work, I was able to meet with a variety of patients and learn about their medical and social problems. As a former patient myself, the idea came to me to create an NGO that would work to solve patients’ problems. The idea to create a non-governmental organisation (NGO) which would work on patients’ rights, globally and here in Azerbaijan, was always a priority.

With guidance from TBEC and the support of TB-REP, as well as the invaluable advice of Elchin Mukhtarli, who answered all my questions, I established the NGO ‘Towards a Future Without Tuberculosis’, which protects patients across Azerbaijan when their rights are being undermined. I started to travel around the republic as a TB project coordinator and when meeting patients, I asked not only about the progression of their treatment but also about their everyday problems, their psychological struggles. Naturally, at the start people held back, thinking that this was just a tick-box charitable exercise. But as time went by and our efforts started to bear fruit, people began to understand that the organisation simply exists to help humanity and good deeds and people from across the country began to contact us about their problems and the ways their rights were being violated.

I want to quickly introduce you to a few cases:

Rustam’s Story

I met Rustam in the Sumqayit TB hospital on a work trip. He looked weak and unconvinced that the next round of DOT treatment would make any difference. His body was very weak. When I came to see him and suggested that we speak, naturally he did not take me seriously. But seeing my perseverance, he got in touch. Over the course of our conversation, he explained that he is one of a family of seven who had been forcibly evicted from occupied Qubadlı. He explained that on arrival to Sumqayit they lived in a grey basement, because of which his mother developed TB and died, unwittingly infecting both him and his younger sister. Looking at his medical documents it was clear that Rustam had developed drug resistant TB (DR-TB) and his sister had multiple drug resistant TB (MDR-TB). Their father was constantly working. When I asked how we could help him, Rustam explained that he did not have enough strength to work but he also couldn’t carry on like this. He hadn’t been able to get disability benefits and he hoped to be able to get social housing for refugees, as promised in government plans. Our organisation and Elchin Mukhtarli’s NGO, especially thanks to his deputy Parvana Velieva, worked day and night contacting the Ministry of Social Affairs and the Parliament Deputy Sonia Alieva, who in the end was able to get Rustam his benefits, which helped him regain his belief in justice and life. After our conversations about the importance of finishing his round of medicines, both he and the treatment were back on the mend. Now Rustam is almost completely well again, and is sister is receiving treatment in hospital. And after more advocacy work with Parliamentarians and the Government Commission on Refugees and Forced Migrants, Rustam will receive the key to his flat any day now.

Sedva’s Story

Sedva developed DR-TB in the Sumqayit TB hospital, but after lapsing taking her treatment, she developed resistance to the medicines and was sent to the specialised hospital no. 9 for patients with MDR-TB. We learned that she was married with two young children. Sobbing, she informed us that, in addition to the fact that her documents to receive disability benefits had not been sent to the medical commission, because of family conflicts her mother-in-law and her husband were not letting her see her children. She asked us to help her apply for her benefits and help her be able to see her children. We started by contacting both the State Committee for Family Problems, the Republic Ombudsman, and the Ministry of Labour. We have currently managed to get the State Committee for Family Problems to meet her and they have started their actions. We are currently working to help Sedva access her benefits.

Ulvia’s Story

Ulvia was born in the 1970s in the city of Ganja. When she got in contact, she told us that she should have been receiving second level disability benefits because of her TB from 2015 to 2019. However, in March 2019 she was informed that her right to benefits dating back from 2017 had been annulled because of a mistake in the documents and that everything she had been paid had to be given back to the state. Confused, she appealed to us for help. In turn, we appeals to the Ministry of Labour and in exchange for the violation of her rights, Ulvia will now receive the first level of disability benefits for the rest of her life.

This blog was written to familiarise you with the work of ‘Towards a Future Without TB’. This is only a small part of our work, all of which we achieve without any kind of financial support. The organisation will continue to conduct its charitable and royalty-free activities. To our great pride, we have been recognised by such an international organisation as the International Committee of the Red Cross, through the Head of the Baku Office Ms. Aimona Sessera. Recently, we addressed a meeting of the Baku office of the European Community. Parliamentary deputies Mrs. Sona Aliyeva, Sadagyat Veliyeva, Ganira Pashayeva have been of great support to us. We also took part in international seminar meetings in 2017 in Tbilisi and in 2018 in Minsk and Chisinau on knowledge-exchange and advanced training. I would like to note with honour that the organisation is a member of the international patient organization TB PEOPLE, a member of the JCC under the Ministry of Health and, moreover, is a full member of the Azerbaijan Tuberculosis Coalition.

For more information about our work, please see our full summary in Russian here.


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