Interviews conducted & written by DVL Padma Priya for MSF
For World TB Day 2018, we celebrate the courage and endurance of four MSF patients who are currently undergoing treatment for drug-resistant TB (DR-TB).
Pooja, Rekha, Vikas and Sita are receiving care in MSF’s DR-TB programme in Mumbai, where a multi-disciplinary MSF team is providing patients with resistant strains of TB with individual regimens of drugs are tailored according to their individual needs. This includes a combination of the two newest DR-TB drugs, bedaquiline and delamanid as part of their treatment regimen.
Overcoming DR-TB requires that patients are fully involved in their own treatment, and every effort is made to ensure that patients understand the disease and the steps they can take to help themselves complete treatment. Patients are also guided on how to cope with daily stigma, among other challenges, while nutritional support is provided to sustain and support patients through their treatment journey.
We salute the bravery and strength of these four survivors, who share their stories here.
Pooja, from Bhandup, Mumbai
Thirty-year-old Pooja came to Mumbai in 2015 to seek treatment for double pneumonia. However, to her shock, she was diagnosed with tuberculosis (TB) and was informed by a private doctor that almost 95 per cent of her right lung was damaged from the disease. She was very weak, and often felt delirious with periods of unconsciousness. This lasted for over three months. Pooja had earlier, in her childhood, recovered from TB infection of stomach.
The private doctor told her that treatment would cost Rs 30,000 to Rs 35,000 per month which her father, a factory worker couldn’t afford.
Finally, they decided to seek free DOTS treatment provided by the government through a municipality health post in Bhandup. She was then put on treatment for multidrug-resistant tuberculosis (MDR-TB) which involved a year of injections and a daily cocktail of drugs, but saw no improvement. “I used to just lay on the bed in my house. I had fever every day, the cough didn’t seem to get better and I used to vomit a lot and even my skin turned red because of the side-effects from the medicines,” she said. Pooja was then referred to Sewri TB Hospital in Mumbai where her treatment regimen was changed, still with little effect.
“I used to cry a lot and feel very frustrated. Even my family members left me alone in one room. They didn’t understand what I was going through and told me that to stay away as they were scared of being infected,” she adds. After ten months of ineffective treatment, Pooja returned to her doctor and begged for something more to be done.
In late 2016, she was referred to MSF’s independent clinic in Govandi, Mumbai where she met doctors and patient support staff. Pooja was correctly diagnosed as suffering from extensively drug-resistant Tuberculosis (XDR-TB) was put on a treatment regimen which included two new DR-TB drugs bedaquiline and delamanid. Within a few days I started on treatment, I could feel the difference. Before, I used to vomit soon after eating and always felt fatigued. Even the fevers reduced and I soon had the energy to come on my own to the clinic,” she said.
One of the biggest challenges faced by TB patients is stigma. Pooja was stigmatized by her family, forcing her to live alone. “It’s only because of my father that I’m pulling through and staying on treatment. Everyone else had shunned me. Now that I am getting better, people have started talking to me again,” she says.
“In the MSF clinic, I have never felt shame for having this disease. Everybody speaks to us with love and care and treats us with respect. They explain what’s happening and what the disease does and how to cope with the side-effects. The support group meetings help me a lot as I feel encouraged hearing others on their path to recovery. Knowing there are others going through similar struggles gives us a sense of solidarity,” she says.
“I believe now that taking the right medicines and having a supportive doctor makes all the difference. If you have TB, don’t give up on the treatment because you will get better,” she says.
“Providing these new drugs to more patients will also help immensely. I hope the government will ensure that all patients in need receive them and are helped to recover. That’s all TB patients want: to lead a normal, healthy life,” says Pooja.
Rekha Yadav, a single mother from Mumbai
Rekha, a 33-year-old single mother from Mumbai was diagnosed with TB in 2015. A vegetable vendor, she recalls the day she was diagnosed with TB. “I used to go every day to the market to buy vegetables. That fateful morning, I collapsed after coughing up blood and was taken to Shatabdi hospital where I was diagnosed with TB. I cried a lot when I heard that because I had lost a sister with the same disease and I was very scared that I would die too” says Rekha.
She was started on a six-month treatment but had severe side effects from this. After four months, she was diagnosed with multi-drug resistant TB (MDR-TB) started a two-year long course of treatment.
“I felt fine for the first six months, but then the side effects began. I began going deaf in one ear and I was always fatigued and in pain. I lost all my appetite, would cry all the time and many a time felt suicidal. The injections were the worst. I was on these for nine months. Sometimes, the drugs wouldn’t even be available. We were asked to come back when medicines were available or get them from private chemists which I couldn’t afford. This often meant my treatment was stalled due to no fault of mine. I became so weak that I had to depend on my parents to even go to the bathroom,” says Rekha.
She was then referred to MSF clinic in Govandi in October 2017 where she was diagnosed with XDR-TB and started on a treatment regimen that contained the two newest DR-TB drugs, delamanid and bedaquiline.
“I used to come every week to the clinic for medicines. Then it became once a month. I get medicines on time here and the MSF staff follow up with me very regularly and help me cope with the side effects and also provide me ration,” she says.
Five months on, Rekha is feeling better and her appetite is returning to normal. Apart from the physical improvements, she also feels stronger psychologically. “Before, I didn’t want to even buy clothes for myself. I felt there was no point in owning things when I was going to die anyway. Now, I buy myself a dress whenever I feel like it.”
“With the new drugs and treatment, I feel better. I have hope to live and believe I can do whatever I want. I used to worry about the fate of my 9-year-old daughter but now I don’t. I want to ensure that she has proper schooling so I’m looking for a good job or want to start a nice vegetable shop of my own in my locality,” she says.
Rekha also attributes her improvement to the nutritional support she received. “The medicines can’t make us run if we don’t fuel our bodies with proper nutrition. It’s important that we eat nutritious food even if we don’t have an appetite. Drink spinach juice, eat a lot of fruits and if you can’t afford fruits make sure you make the most of whatever you can eat. Pretend that the medicines are chocolates and take them regularly,” she adds.
Vikas, 29-year-old, Thane
In 2011, 22-year-old Vikas developed a high fever and severe cough. He went to a private doctor who diagnosed him with TB. Vikas was then put on a six-month treatment for tuberculosis (TB) which he completed successfully. However, two years later, in 2013, he fell ill again and was this time diagnosed with drug-resistant TB (DR-TB).
He started treatment again but some of the drugs were often unavailable. He continued his treatment for two years but saw no improvement.
In late 2016, he was referred to MSF’s independent clinic in Govandi. “When I arrived, I was suffering a lot with severe side effects from the medicines. The doctors here did a thorough check-up and changed my treatment. I was told that I had XDR-TB and was put on a treatment and now I feel much better,” he says. Vikas has been on XDR-TB treatment since last 2 years which also include the two new drugs bedaquiline and delaminid.
Vikas feels that psychosocial support must be made available for all patients like him who have to live through many years of painful treatment. “Earlier I used to feel very sad and depressed and wanted to die. Only because of the support of MSF and family members I developed hope. The counselling also helped me a lot as the counsellors know and understand what I am going through and don’t just expect me to put up with all the pain,” he says.
Vikas had recently participated in a dream-run category of Mumbai marathon and had completed successfully six-kilometre race. “I wanted to prove to the world that once you put your mind to it, it’s possible to do anything and since I was feeling better I decided to run,” he says.
Sita, a housewife from Andheri
Sita* (name changed), from Andheri, completed her treatment in December 2017 and is awaiting results.
Sita, 27 years old, was diagnosed with MDR-TB in 2010 after developing high fever and severe weakness. She thought she had malaria but the private doctor diagnosed her with TB. “I cried a lot when I heard this and I was very scared. I had also lost my sister to this disease and I was very upset,” she recalls.
She was then put on treatment but unfortunately struggled to adhere to the prolonged painful MDR-TB treatment. “Many times I couldn’t afford the drugs that were being prescribed and would have to stop; also I wasn’t feeling any better and after a year and a half I discontinued completely,” she says. She then approached a government hospital where she was put on treatment again without improvement. “Often they didn’t have the drugs and would make me run here and there to get many tests. This frustrated me a lot but my mother kept pushing me to keep taking the medicines. In 2015, Sita approached Hinduja hospital where she was told that she would require a treatment which involved daily injections for another nine months. “Every injection costs Rs 400 and this was not something my parents or my husband could afford. I was forced to go to another doctor who then suggested I approach MSF,” she says. In late 2016, Sita came to MSF clinic in Govandi where she was diagnosed with XDR-TB, an unfortunate progression from MDR-TB.
Sita has since then completed the treatment which included the two new drugs bedaquiline and delamanid and an injectable that’s delivered directly to the body using a port-a-cath (Catheter). “Even during the course of this treatment, I felt like giving up but the support given by the counsellors and my mother helped me a lot,” she says. Within eight months, Sita felt considerably better and could travel to the clinic independently.
She also went on to become a peer-educator for MSF, speaking to other patients like her. “When I was really sick and scared, I had no one to speak to and tell me about the drugs. So, when I was asked to become a peer educator, I said yes because I didn’t want others to go through the same anxiety as me. I wanted to help others understand the importance of taking the medicines without a break. Many times, patients would call very scared but by the end of the conversation, I would have managed to convince them to eat properly and take medicines regularly,” says Sita.
Sita too experienced intense stigma during the course of fighting the disease. “At a government hospital, a social worker said ‘your sister gave you this gift before she died’. I was very upset and started crying. Why did she have to say those things about my dead sister?” she asks. “The stigma I have had to deal with was very painful and left me very angry,” she adds.
As she awaits her results, Sita hopes to get back to having a normal life with her family and taking care of them. “I have been living with my mother for the last seven years and my husband has been looking after my children all these years. Now that I have completed my treatment, I want to go live with my family and take care of them. Then later when my children grow up, I will look for a job,” she says with a smile.
About MSF’s DR-TB project in India:
Since 2006, MSF has provided free-of-charge comprehensive treatment packages with individualized treatment regimens for patients with drug-resistant TB in an independent private clinic in Mumbai.
The facility provides ambulatory medical and psychosocial care for patients with very complex TB resistance patterns (meaning their TB strain is resistant to many or nearly all available TB drugs), who require treatment regimens which are not available in the public sector. Most patients seen by MSF have often previously been treated with ineffective regimens for several years by public and private practitioners. Some are also believed to have been directly infected in the community by extensively resistant strains.
MSF is treating XDR-TB patients with a regimen including the two new drugs Delamanid or Bedaquiline. Together in combination, early results have proved positive and effective for use in combination which are showing promising results and offer renewed hope to patients, especially when there are no other options left for such patient.
Since 2014, MSF has initiated treatment for 126 patients with new drugs in its Mumbai clinic. Total 15 patients have been undergoing treatment on bedaqulline (since 2014) and 42 on delamanid (since 2015) A programmatic data from 69 patients with extensively drug-resistant TB treated with a combination of bedaquiline and delamanid in MSF-supported project in Mumbai also offers promising evidence that the treatment may be safe and effective. Interim Outcomes shows 73% tested negative for TB after six months of treatment, an early indicator that the treatment will ultimately be successful. So far 7 patients are cured with the combination of new drugs and 12 are cured with either of drug – bedaquilline or delamanid.