MSF-USA: Krygyzstan: Ex-Prisoner who Beat TB Preaches “Patience, Patience, Patience and Don’t Lose Hope!”

March 23, 2010
Krygyzstan: Ex-Prisoner who Beat TB Preaches “Patience, Patience, Patience and Don’t Lose Hope!”

Ruslan is returning to prison to visit his fellow inmates, but this time he’s a free man. He's come back to Colony 31, a special penal colony for prisoners suffering from tuberculosis (TB), to celebrate with his doctors the completion of his long, arduous and painful treatment for multidrug-resistant TB (MDR TB).

“It was like a nightmare, you can’t imagine how difficult it was to take those drugs,” he explains. “You want to sleep but you can’t. You feel dizzy, you feel nauseous, you vomit, but you don’t feel any better. I took the drugs even though I felt awful but my former cellmate couldn’t keep going. For him the side-effects were too much.”

Every year 120,000 people die from MDR TB, while nearly half a million new cases are identified. The number of patients suffering from TB caused by drug resistant strains is growing; the World Health Organization estimates two million cases worldwide. Most patients contract MDR TB because they are not treated properly, but for a growing number of people, their first TB infection is with a resistant strain of the disease.

Treatment for MDR TB is costly and complex. It can last up to two years and comes with severe side effects, although a cure cannot be guaranteed. Side effects range from unpleasant to unbearable and even dangerous. Several TB medicines have terrible gastric effects, trigger nausea, and cause the kidneys and liver to malfunction. To counter such side effects, the only solution is to add more tablets to the already extremely high daily pill count.

In collaboration with the International Committee of the Red Cross, MSF has been running TB treatment projects at two sites in Kyrgyzstan since 2006: Colony No. 31, situated on the outskirts of the capital, and a pre-detention center called Sizo No. 1.

One of the big challenges of a disease such as TB is maintaining continuity of treatment, because if treatment is interrupted, drug resistance could develop.

One out of three prisoners with tuberculosis is released before the completion of treatment and faces enormous obstacles once outside the penitentiary system. Since they struggle, mostly unsupported, with drug addiction and for the bare necessities of life, many ex-prisoners do not see their treatment as a high priority. Some may not even have the money to reach the nearest TB facility. If they do reach it, they may not be accepted because they don’t have the proper documents or because medical staff are unwilling to treat ex-prisoners.

“I was released in May 2008, right in the middle of my treatment,” says Ruslan. “While I was in the colony the social workers explained to me how I could continue treatment in the civilian sector. But when I got to the hospital, the doctors looked at me with suspicion. ‘Ex-prisoner…criminal’ they said. But after a while, because of my good behavior, their attitude towards me changed.”

Umutai Dauletova, MSF’s social support coordinator, affirms that it can be difficult for ex-prisoners with TB to be admitted to public hospitals: “Our patients face the double stigma of not only having TB but also having been in prison. In addition, they may be homeless, unemployed, be dependent on alcohol or drugs and be without identity papers.”

Today, around 70 former patients trying to complete their TB treatment are being supported by a team of MSF social workers and a network of volunteers. Support includes counseling, information and education, food parcels and money for transport.

“We are trying to implement a case management system now,” says Dauletova. “It’s a community approach, where volunteers help patients adhere to their treatment.”

Ruslan works as a volunteer case manager and offers support to some TB patients who are getting treatment in the hospital near where he lives. “With the help of the MSF social team, I try to cope with my responsibilities as a case manger. My message to the people I support is: patience, patience, patience, and don’t lose hope!”

From 2006 to 2009 MSF supported 2,270 TB cases, including 200 MDR TB cases, in Colony No. 31 and Sizo No. 1. MSF’s TB project includes the provision of training and drugs, the equipping of laboratories and the rehabilitation of the prison hospitals and living quarters for TB patients.

MSF has overseen the introduction of internationally-adapted treatment protocols in the penitentiary system and has assisted the Justice Department and the Ministry of Health to improve the medical care of TB patients in prison.

In 2007, an MSF office of “social support” was opened in Osh, the largest city in the south of Kyrgyzstan, to help former inmates maintain their treatment. To highlight the fact that the fight against TB, especially in prison, is not only a medical issue but also a human rights issue, MSF organized two photo exhibitions in Bishkek to raise awareness of the plight of prisoners and ex-prisoners with TB. Entitled “Behind the Bars and TB” and “In and Out: Leaving Prison with Tuberculosis," the exhibitions were the work of the Ukrainian photographer Alexander Glyadyelov.