“All the time my children were with me, giving me their best care that they could give. As for my relatives…., this period for me was a kind of test to understand who is who. From the time they heard about my TB their relationship with me and with my family changed rapidly. They preferred to avoid any contact with me. They were even telling my wife to send me to live in far prairies in order not to infect the people around me. They were sure that I would die soon. But now they are shy. Really, very shy.”

Mukhtar writes about the role his wife and children have played in supporting him though his treatment for multidrug-resistant tuberculosis. Mukhtar is being treated for MDR-TB by MSF in Kyrgyzstan.    

Ali (not his real name) most likely has multidrug-resistant TB (photo with Ali’s permission) © Raghu Venugopal

“Guy presented Ali’s medical history and we all listened. Ali was diagnosed with HIV 11 years ago. He took anti-retroviral  medications, but was not adherent all the time. Ali did not know his CD4 count – a measure of the strength of his immunity. Unfortunately, as well, Ali had been treated for tuberculosis a total of four times – but had never achieved a clinical cure. He had been treated for TB in 2006 for six months, 2007 for eight months, 2010 for eight months and again started TB treatment in October 2012.
Guy called me because he suspected Ali had multidrug-resistant TB (MDR-TB). MDR-TB is a major concern of MSF’s since it is under-diagnosed and undertreated around the world. When the diagnosis of MDR-TB is made, the treatment is very difficult.”

Raghu describes how telemedicine, new tests and treatment will hopefully help Ali recover from multidrug-resistant tuberculosis in Chad.     

Illustration: This is in Bandra again, in a slum. This is a drug-resistant TB patient with HIV as well. He was happy to have us there and let us draw him and talk to him, and the stigma wasn’t an issue for him. This is really a description of the outside of the house where he lives with his mum and his other brother. She’s raised six children here; he sleeps outside as a sort of precaution, she sleeps inside, and this is his bed which is covered up by bits of plastic bags and propped up by pillars and corrugated iron. It gives you an idea of the sort of places that [MSF’s patients] are living in, and living in when they’ve got this horrible disease. India 2013 © George Butler

MSF’s HIV/TB Project in Mumbai

MSF invited illustrator George Butler to visit our HIV and MDR-TB project in Mumbai, India to capture our activities there. He returned with images and stories of families affected by multidrug-resistant TB, their care givers, and the MSF team responsible for their treatment.

Illustration: India 2013 © George Butler

MSF’s HIV/TB Project in Mumbai

MSF invited illustrator George Butler to visit our HIV and MDR-TB project in Mumbai, India to capture our activities there. He returned with images and stories of families affected by multidrug-resistant TB, their care givers, and the MSF team responsible for their treatment.

Test Me, Treat Me: A Drug-Resistant TB Manifesto

The cost of DR-TB drugs are so high that most of the people affected by DR-TB do not have access to life saving medications. For the “lucky” ones that do have access, the treatment is long and painful. It can take up to 2 years, 14,6000 pills, and 8 months worth of daily injections to cure DR-TB. Many people living with DR-TB drop out of treatment plans because it severely hampers daily functioning and ability to maintain a normal lifestyle.

We need better treatment now! Learn more about the manifesto.

Test Me, Treat Me: A Drug-Resistant TB Manifesto

As the epidemic continues to spread, Drug-resistant TB becomes increasingly hard to tackle. The treatment is too long, too toxic, and too costly – the drugs alone cost at least $4,000 just to treat one person. We want to save many more lives, but we desperately need shorter, safer and more effective treatment to do so.

We, the undersigned people with DR-TB and those involved in their care, here raise the alarm about the devastating toll this disease is taking on us, our families and communities across the globe, and therefore make the following three demands:

1) We call for universal access to DR-TB diagnosis and treatment now.
2) We call for better treatment regimens: the TB research community, including research institutes and drug companies, must urgently deliver effective, more tolerable, shorter and affordable DR-TB drug regimens.
3) We call for more financial support to increase DR-TB treatment, and a commitment to support research into developing better treatment

Photo:This nine-month-old baby was recently diagnosed with MDR-TB. There is no guidance from the World Health Organization on the best way to treat children with drug-resistant TB. Nurses have to cut adult-formulation pills, which is imprecise and creates a greater risk of over- or under-dosing the child. Kyrgyzstan 2013 © Vincent Tremeau

Surviving Two Years of Treatment for Drug-Resistant TB in Kyrgyzstan

MSF works in the penitentiary and civilian sectors in Kyrgyzstan offering treatment for multi-drug resistant TB. In February 2012, MSF began offering comprehensive medical care for people with drug-resistant TB and people co-infected with HIV and TB in the district of Kara-Suu, southwestern Kyrgyzstan, where the rates of drug-resistant strains of TB are particularly high. Teams also offer psycho-social support to encourage adherence to the arduous two-year treatment program. While the team has helped renovate the TB hospital in Kara Suu to improve infection control, the aim is to enable patients to be treated on an outpatient basis, at clinics closer to home.

Test Me, Treat Me: A Drug-Resistant TB Manifesto

We, the people infected with drug-resistant TB (DR-TB), live in every part of the world. Most of us were exposed and became infected with DR-TB because of the poor conditions in which we live. Undiagnosed, this disease spreads among us. Untreated, this disease kills. But in the countries in which we live, fast and accurate diagnosis is rarely available, and only about one in five of us actually get effective DR-TB treatment.

Those of us “lucky” enough to receive treatment have to go through an excruciating two-year journey where we must swallow up to 20 pills a day and receive a painful injection every day for the first 8 months, making it hard to sit or even lie down. For many of us, the treatment makes us feel sicker than the disease itself, as it causes nausea, body aches, and rashes. The drugs make many of us go deaf permanently, and some of us develop psychosis.

Photo: Serovikov’s relatives are afraid to visit him in the hospital. Many patients like him suffer due to stigmatization around TB Kyrgyzstan 2013 © Vincent Tremeau

Surviving Two Years of Treatment for Drug-Resistant TB in Kyrgyzstan

It can take up to 2 years to treat drug-resistant TB. That means taking 20 pills a day (a total of 14,6000 pills) and getting 8 months of painful daily injections. We need better treatment now.

MSF works in the penitentiary and civilian sectors in Kyrgyzstan offering treatment for multi-drug resistant TB. 

Test Me, Treat Me: A Drug-Resistant TB Manifesto

People with drug-resistant TB and their medical providers worldwide call for urgent change. To learn more about MDR-TB and the manifesto, visit msfaccess.org/TBmanifesto