By Nataliya Arlyapova, a member of PIH-Russia's Moscow-based communications team
Later this spring, PIH-Russia will publish a book authored by tuberculosis (TB) survivors. The collection of essays come from various places throughout the world, including Russia, and have been translated into Russian for these printing. PIH staff hopes these stories of survival will allow TB patients across PIH’s Russia and Kazakhstan TB projects to better understand the experience of treatment, and offer some inspiration for returning to a normal life post-illness.
Currently there are almost no books in any language written by TB patients, and there are virtually no books published in Russia and countries of the former Soviet Union written from the perspective of a TB patient.
Patient adherence to medical treatment is a significant element of any therapy. It is particularly important for tuberculosis treatment which can last 4-6 months, and it is critical for those who undergo a long treatment of multidrug-resistant tuberculosis (MDR-TB), which can take up to 24 months.
“The disease is increasing in prevalence. We are no longer searching for a cure for TB: we have one. The problem lies with the length of treatment and the degree to commitment required. For those of you who have tuberculosis or have been on long term treatment, my message is a simple one: Keep taking the pills! There is life beyond this. I know that it’s hard, but making the choice not to take them may prolong your own suffering and put others at risk.” - Paul Mayho who contracted MDR-TB in 1995.
In Russia, patients are required by law to take their medication. Yet, non-adherence still remains a persistent problem in TB treatment—even with directly observed treatment.
Non-adherence leads to low treatment outcomes and high rates of treatment failure, treatment default, and death. Additionally, non-adherence can lead to multi-drug resistant or extensively drug-resistant tuberculosis, and consequently, to the dissemination of the infection in the community.
When a patient finds out that he/she has tuberculosis, it is often an emotional shock. Successful adherence to treatment regimens is influenced by many factors, and PIH-Russia recognizes the most significant among them are health education of patients, social support, and improvement of motivation.
This is when the patient needs careful attention and compassion from health care providers and their families. Moreover, experience of former TB patients who have survived and have been cured of TB is a significant benefit to a new patient, to learn from other patients’ treatment lessons. It can help convince a new patient that tuberculosis is a curable disease. Thus, sharing treatment experience is important to improve health education and patients’ motivation continue treatment.
“Both TB and MDR-TB are curable if you take all of the TB medicine given to you and do not miss any doses. It is important to stop taking TB medicine only when a TB doctor or nurse tells you to do so. This is because if you do not take all the TB medicine, or if you stop taking it too early, there is a chance that the TB could come back; it would be more difficult to treat a second time around.” – Paul Thorn, a former MDR-TB patient
The handbook is intended to help patients understand the disease afflicting their bodies, the ways TB spreads, the types of treatment, and how to manage side effects to anti-tuberculosis medications. The handbook will give thorough explanations as to why it is important to take all prescribed medications. Additionally, it includes practical tips and recommendations given by patients who had undergone long TB treatment.
This initiative was made possible by Dmitry Taran, coordinator of PIH’s TB programs in Russia. In coordination with PIH’s Tomsk-based Sputnik project, Dmitry spent time with “difficult-to-treat” TB and MDR-TB patients. After listening to those stories, he decided to develop and promote a new approach to treatment adherence.
This handbook will be widely distribution among TB patients in the Russian and Kazakhstan regions where PIH works, and in countries of the former Soviet Union with high incidences of TB.