An injection usually comes with a little sting – but not this one. Imagine thunderbolts, accompanied by burning, stinging and a piercing pain that shoots up your back and then moves all the way down to your legs.
This is how Zolelwa Sifumba described the injection that forms part of the course of treatment for multidrug-resistant tuberculosis – MDR TB – which is caused by an organism that is resistant to two of the most commonly used treatments for TB.
The 25-year-old medical student at the University of Cape Town contracted MDR TB in 2012 from a patient during her studies.
It all started with a lump
“I didn’t have the usual symptoms. I wasn’t coughing. I wasn’t losing weight. I had a lump on my neck and it was discovered that I had TB – and it was drug resistant.”
Despite studying medicine, Sifumba had no idea that patients with MDR TB had to get jabs.
“I didn't know there were injections at first so I went and they gave me about 22 pills to swallow. I took the pills and, when I wanted to leave, the doctor told me about the injection.”
She held out her arm but the doctor said the shot had to be injected into her bottom.
Sifumba, wearing a red, green and yellow African printed band around her head to hold up her neatly combed black afro, took a long pause before revealing what went through her mind at the very moment she got her first injection: "I just asked myself is all this pain necessary."
Describing the injection in detail, she said: “It was burning, it was stinging, it was a sharp pain – it felt like they were thunderbolts.”
And the pain never stops.
“The injection was like nothing I’d ever felt before. It burns from the second it starts – it is quite a thick serum so you can’t inject it in fast. It takes some time.
“The pain went down my legs and up to my back. It is so painful. No injection should be that painful. It is intense pain that never stops,” said Sifumba.
The pain is so severe that it lasts long after the patient walks out of the doctor’s room.
“It is painful to get up. It is painful to go shower. It is painful to eat. It is painful to go to school. Everything is so difficult all day. And the next day when you go for your injection, you’re still in pain from the last injection.”
Counting the pills
Although the injection lasts for the first six months of MDR TB treatment, patients have to continue taking a cocktail of pills for between 18 and 24 months.
“Every day of those pills you are afraid for your life. You think my heart is going to stop or my liver is going to stop working, my kidneys, my hearing and my eyesight.
“There is so much that could go wrong and you’re taking these pills and you just sit there and you wait. And when the worst comes, you find yourself over the toilet vomiting everything out and you have to go back and take them again.”
This long course of treatment for MDR TB, coupled with the many side effects, often means that patients fail to take their medication.
However, a new study holds the promise of a dramatically shorter treatment option. This was disclosed at the 46th Union World Conference on Lung Health, which ended in Cape Town on Sunday.
New findings showed an 80% success rate using a nine-month treatment course for MDR-TB.
Clinical research from a multi-country study, coordinated by the International Union Against Tuberculosis and Lung Disease [The Union], found that from 507 adult patients, treatment was successful in 80.9% of the patients, 7.7% died, 6.5% went missing and could not be followed up and in 4.9% the treatment failed.
Arnaud Trebucq of The Union, a lead investigator of the study, told Health24 that having to be treated for 15 months fewer is remarkable progress. “An over 80% cure rate versus 55% is also very impressive.”
All the drugs used in the short-course regimen are recommended by the World Health Organisation (WHO) and are used in the 24-month regimen.
“It is just the combination of seven drugs for four months and four drugs for five months that differs,” he said.
Trebucq said several countries have officially adopted this regimen.
Change in the winds
The WHO is expected to announce new guidelines for TB treatment at the end of March 2016.
Meanwhile, the STREAM trial is also testing the efficacy of a shorter course of MDR-TB treatment. It plans on testing two additional MDR-TB treatment regimens: a nine-month all-oral regimen that does not require injections, and an even shorter six-month regimen.
The shortened course of treatment could provide a powerful alternative for a country like South Africa, said Dr ID Rusen, senior vice-president of research and development for The Union.
Despite the advances made with short-course regimens, Rusen told Health24 that drug resistance is mainly preventable.
“It often arises from poor care of patients with drug-sensitive or ‘normal’ TB. The best prevention is a strong health system that provides timely diagnosis and good care of all TB patients before they develop drug resistance."
He said the current treatment for MDR-TB is so harsh that there is an urgent need to find more tolerable and effective treatments.
This is something that Sifumba knows all too well.
“The treatment is just so gruelling, so intensive, so it would be great if there are better drugs made with short courses and fewer side effects."
Apart from the physical pain, there is also emotional pain caused by the stigma of TB.
She said people feared that they might get TB from her and some simply did not understand why she got the infectious bacterial disease, with some even presuming that she was HIV positive.
“People stayed away. My family didn’t understand. I was isolated and then I started to blame myself, thinking maybe something is wrong with me."
Not having support would come to define the darkest moments for Sifumba.
“The lowest point was when I had no support. Nobody believed that I was sick. Nobody even wanted to consider the fact that I am not okay. Nobody wanted to consider the fact the people taking MDR TB treatment experience side effects.
“A lot of doctors say they know people on MDR treatment who do not experience any side effects. This can’t be true, everyone experiences some side effects."
'I never want to see another patient again'
Shaken to her very core, Sifumba didn’t want to see another patient again and was prepared to end her studies because of the fear of getting TB again.
“I told everyone that I was not going back [to university] and then it hit me that I did not have a degree. I’d spent six years of my life at medical school and I had not attained anything so I decided to finish my studies,” she said.
But now Sifumba realises the pain has empowered her.
“The amazing thing is that my insights have benefited so many people. I came back and had a greater influence on people, other medical students, doctors, professors and patients.”
She can calm down disheartened patients. She is also able to enlighten doctors about the pain involved in TB treatment.
“I could just pull the doctor aside and say it is painful so bear with this woman. As much as they treat people with TB, they don’t understand what it is like when they see their patient flinching when they get their injection. They don’t realise just how painful it is."
Sifumba, who will graduate in 2017, also noted that there is a perception among healthcare workers that they are not at risk of contracting TB because they are seen as helpers.
“It is an airborne disease. We can all get it. A lot of healthcare workers get TB, but a lot of them are quiet about it."
Health24 resident doctor Owen Wiese wrote in a column about the lack of support for healthcare workers from government.
“Being in the frontline of the battle against communicable diseases, one would think that government would go out of its way to protect health workers treating TB patients. This is in fact very far from the reality. Even in big academic hospitals it is often impossible to find any of the necessary personal protective equipment, such as N95 masks,” he wrote.
“N95 masks are specifically designed to protect against droplet infection of airborne agents like TB. In community health centres this is even more of a struggle. The masks that were available were often too big or too small, or so deeply hidden away that it was almost impossible to find them.
“More often they were just out of stock. Health workers then have to rely on normal surgical masks that are basically useless. Cost is presented as the main reason for N95 masks not being readily available.”
Sifumba believes that anyone visiting a hospital can get TB.
“The hospital is the last place where you would expect to get sick. It is where you go to get help. But a lot of people do contract TB while they are in hospital. They come in for something else and leave the hospital having TB as well. A lot needs to be done within hospitals because there is a very high risk of contracting TB."
She said emergency centres in State hospitals, which are often under-resourced, can get extremely busy and overcrowded.
What cough is that?
“Everybody is coughing so you don’t know if this cough is heart failure or TB or pneumonia."
Sifumba recommends some changes that can be implemented at hospitals to stem the spread of TB:
- Screenings should be rolled out at hospitals with people being screened as they come in;
- Patients who are coughing should be separated from other patients;
- If they are exhibiting any TB signs a sputum sample should be taken as soon as possible;
- If the results indicate positive for TB, then move them into an isolation room so that when they cough they don’t infect other people;
- Put a respirator on them to prevent the respiratory droplets from spreading;
- Healthcare centres should have some kind of filter system to remove the respiratory droplets from the air; and
- The focus should be on making the wearing of masks more positive.
With less than half of MDR TB patients being cured and given another chance at life, Sifumba believes it is crucial that she share her story to show that there is life after TB.
“Not everyone is fortunate enough to make it through treatment which is why I am really glad to witness what has happened.”