MSF's Sophie Scott visited Makayane project in Swaziland where patients are treated for multi-drug resistant tuberculosis as outpatients. Here she gives a personal account of the project.
“What if I told you that a third of the world’s population is infected with a deadly disease? And that the disease has mutated into a more deadly form that doesn’t respond to the drugs commonly used to treat it? And that although more than half a million people worldwide are infected with the mutant form, the only drugs available can have terrible side effects, making you vomit, lose your hearing or become psychotic?
You’d probably assume I was describing a bad horror film. But the disease is real; it is the world’s second biggest infectious killer after HIV/AIDS. In the West, tuberculosis (TB) is often considered a disease of the past, but in many countries around the world it remains all too common. Even more concerning, the number of people with drug-resistant forms of TB is on the rise.
The kingdom of Swaziland, one of Africa’s smallest countries, has the world’s highest HIV/AIDS rate, with over 26 percent of the adult population infected. Its TB rate is also the highest in the world. Life expectancy is just 49, lower than in Somalia or Afghanistan.
But Swaziland doesn’t look like a country in the grip of a medical emergency – the water is clean, the roads are paved and everyone goes to secondary school. Arriving at Manzini international airport and driving into town, the scenery is stunningly beautiful and there are roadside posters for tourist attractions and safari parks.
The hospitals and health clinics are where it hits you. Instead of seeing sickly old people and infants, it is the grandmothers and children who look healthy, and the young adults who are barely able to walk. Plenty of HIV-positive people look healthy – HIV/AIDS is now a chronic disease, so if you take your pills every day, there’s no reason not to live a long life. It’s the TB cases who look really sick.
Visiting the TB ward, infection control is rigorous. You’re instructed how to put on your mask, pinching the top to ensure that no air can get through. Although most of the TB patients also have HIV/AIDS, there is still a risk of catching TB if you’re HIV negative.
In Swaziland, one in every hundred people has TB. And if you have the mutant form – known as multidrug-resistant tuberculosis (MDR-TB) – your treatment will consist of two horribly difficult years that not everyone can see through to the end. The problem is that if you stop taking the drugs, or take them irregularly, you risk becoming resistant to those drugs too and may develop extensively drug-resistant tuberculosis (XDR-TB), which is even harder to treat. This is a particular problem in places where prescriptions and pharmacies are unregulated, and patients are sold the wrong doses or ineffective combinations of drugs.
The Swazi government realised in 2007 that they just could not cope with the scale of the epidemic. Not only did they have a huge number of patients to treat, but many of the brightest and best of the workforce had succumbed to AIDS, while foreign wages had tempted countless others overseas.
Médecins Sans Frontières was asked to help. Our teams were faced with a very different scenario to the many of the settings where we usually work – in Swaziland, government hospitals are very clean and well-equipped.
Treatment is tough. For the first six to eight months, MDR-TB patients need daily injections. If you live 15 miles from the nearest clinic and you can’t work because of the side effects, this is a big problem. And if you need to take your tablets on a full stomach, but you can’t because you haven’t got enough food, it’s another big problem. And if this is going to continue for the next two years, you may start to think that it simply isn’t worth it.
Tengetile Ntsele knows what it’s like to feel that way. She has HIV and lives with her family in Makayane. After being diagnosed with MDR-TB in 2007 and starting treatment, she often felt like giving up. But her family was relying on her to get through. Nearing the end of her treatment, she had a huge shock: she found out she was pregnant. She was riddled with guilt, knowing that the potent drugs could affect her unborn child. When she couldn’t hide her pregnancy any longer, she told her family.
Her daughter, Sinetsemba Nkambule, was born three months later. Healthy and weighing 3.5 kg, the baby was HIV negative and had no health problems. Tengetile went on to complete her treatment and is now a social worker with MSF, helping other patients to see their treatment through to the end.
“I help to motivate the patients so that they take their treatment correctly, and I encourage them. When I tell them my story and they understand that I’ve been there, and that they can get through it and that they’ll be okay, it gives them hope,” she says.
Tengetile and her team provide support to the patients in a number of ways. Practical help includes providing bus fares, food vouchers, even building an extra room so that patients can sleep separately from family members, protecting them from infection. Meanwhile psychological support and counselling allows patients and their families to talk through their difficulties and find solutions.
One of those receiving counselling is Benson, who lives with his wife Florence and their three children in a hamlet far from the main road. Benson, who has HIV/AIDS, caught MDR-TB while working as a miner. At the beginning of his treatment for MDR-TB, he had to walk five miles each way to get his injections, except on those occasions when he could afford the bus fare. Walking was not easy as the medication made his legs swell.
“I felt like I was lifeless when I first started taking the medication,” says Benson. “I felt as if I had already died. But when the people from MSF came to speak to me, to give me counselling, I felt like my life had meaning and that I had the strength to carry on living. I can’t describe what it meant to me when people came to check up and see how I was getting on.”
The family is not well off, and the food packages provided by MSF make a big difference. “Even if we don’t have much food, I don’t feel nearly as stressed about it because I know that we’ll get food packages and that we’ll be okay,” says Florence. “Taking care of my husband is so much easier because people come to visit us regularly. I feel sure that Benson is going to be cured now.”
MDR-TB is a killer, but the fact is that it can be beaten. Right now it involves a long and difficult course of treatment, and there is a desperate need for better drugs and a shorter treatment course. But relatively cheap and simple measures can make all the difference to people trying to stick to their treatment. And for people like Benson and Ngetie, it is literally a case of life or death.”