Timothé Danon shares his experience of Benin National TB Programme and his treatment for multidrug-resistant tuberculosis, as part of an observational study led by The Union at the centre in Cotonou in 2013.
Timothé Danon knows the Benin National TB Programme (NTP) all too well – he and four of his family members were all treated for multidrug-resistant tuberculosis (MDR-TB) as part of an observational study led by The Union at the centre in Cotonou in 2013.
“I really owe my life to this place and these doctors”, says Timothé, who greets everyone at the sprawling complex by name and with an exuberant handshake. As an MDR-TB patient, Timothé, his brother and three of his nephews were all hospitalised there for months during the most difficult part of their treatment and they came to know the doctors, nurses and staff well.
“My whole family got sick – there were five of us in total from the same home, all with MDR-TB. My older brother and several of his children – all of us were here together. And we’re all cured thanks to this treatment.”
Timothé, his brother Evariste, and Evariste’s three sons, Florantain, Geraldo and Fresnel, were all treated – and cured – using the shortened nine month treatment regimen for MDR-TB that was the focus of the observational study led by The Union in nine countries in francophone Africa.
This new regimen, which contributed to the scientific evidence underpinning the World Health Organization’s (WHO) revised treatment guidelines, cuts treatment time for MDR-TB patients from nearly two years down to just nine months, and greatly reduces – though does not eliminate – the more risky and difficult side effects involved which include deafness and psychosis.
Before this shortened regimen was brought to treatment centres around the world, many countries were simply unable or ill-equipped to treat patients for MDR-TB at all.
The Danon family’s history with MDR-TB mirrors the country’s – and in many ways, the region’s – struggle to combat a disease with insufficient diagnostics and expensive, inaccessible and ineffective treatment.
In fact, all the members of Timothé’s family were not cured. His oldest brother, Antoine, was the first to fall ill. At that time in Benin – and in much of West Africa and around the world – due to a lack in accurate diagnostic tools, TB patients often were not even tested for drug-resistance, and when they were, the countries were unable to supply patients with the long and expensive treatment regimen.
New technology such as the GeneXpert, which allowed for rapid diagnosis of drug-resistance in two hours time – down from the two months wait required by the culture method – and the increased availability of these tools worldwide was the first piece of the puzzle.
But the 20-24 month treatment still posed enormous difficulties, both in the economic pressure the regimen put on countries, as well as the logistic difficulties of procuring sufficient and uninterrupted stock of the antibiotics needed to treat the resistant bacteria.
It was under these circumstances that Antoine was diagnosed with TB and put on treatment. He was not tested for MDR-TB and at the time, the NTP would have been unable to provide treatment if he had received a diagnosis.
Antoine was treated with several rounds of first-line medicines but these never worked and he eventually passed away. Following the diagnosis and treatment of his family members for MDR-TB, doctors at the NTP now feel confident in speculating about why these first-line drugs never worked.
After seeing what had happened to Antoine, when five additional men from the same household all fell ill, the stigma touched the whole family.
“They said that my mother was a sorcerer because we were all so sick. They said it was her who was killing us”, said Timothé. In Benin, where voodoo is a cultural bedrock and widely practiced, this was not an uncommon assumption.
“When I got sick and came for treatment everyone said that I was already dead. That I was never going to return home. But then one friend came to visit me at the hospital. He saw me and he told everyone that I was ok, that I was getting better – that I wasn’t dead.”
Timothé and his three nephews have made a complete recovery. Timothé is working again and lives with his wife and children in a home on the outskirts of Cotonou. His nephews – one of whom was as young as nine when treated – have returned to school and work. His older brother Evariste, who became ill not long after Antoine’s death and was initially given first-line treatment before eventually receiving a diagnosis of MDR-TB by GeneXpert testing, lost his hearing as a result of his treatment.* Once drug-resistance was identified in the family, doctors were able to quickly diagnose the four who followed and start their treatment for MDR-TB directly.
Benin was a key player in the work towards establishing a more accessible treatment regimen for MDR-TB patients. With technical assistance from The Union, Benin was one of three countries to begin treating patients with a shortened 12-month MDR-TB regimen well before The Union launched its observational study of the nine-month regimen in 2013. This was based on the promising results of the Bangladesh regimen, the first study to explore the possibility of a shortened drug regimen for MDR-TB.
The Union has worked closely with the Benin NTP since the 1970’s and 80’s when then Executive Director of The Union, Dr Annik Rouillon, together with Dr Karel Styblo, developed the directly observed treatment short-course (DOTS) – still the gold standard for TB treatment worldwide – and Benin, along with a handful of other countries, was among the first to adopt this protocol.
*The STREAM clinical trial, implemented by The Union and Vital Strategies, is examining a variation on the nine-month treatment that eliminates kanamycin – the injectable medicine that can cause hearing loss in patients such as Evariste.