Busisiwe Beko is a survivor of drug-resistant TB and an activist with the first-hand experience of the struggles parents with children who have the disease.
“I was diagnosed with drug-resistant TB in 2006 together with my child who was 5-months-old at the time. She started taking the treatment and it was not a nice experience for both of us, but it was worse for her.”
Beko explains the amount of medication they both had to take for two years before they could be TB free. “She had to endure the severe pains [with] the injection like I went through. I had to take about 20 tablets each day and the injection from Monday to Friday. For her to get admitted to a hospital was a hassle. It took at least four months for her to be seen by a specialist because there was a waiting list that she had to skip so that she could be diagnosed with TB.”
The Cape Town-based TB counsellor for international humanitarian health aid organisation, Médecins sans Frontières (MSF), known as Doctors Without Borders, says that issues of getting diagnosed are not the only challenges faced by parents with children who have TB.
“There was a challenge when she started treatment and even today we still don’t have a child-friendly regimen of drug-resistant TB treatment. I still remember that I had to crush the tablets for my child and put them in water so that they could dissolve.”
Parents in a situation like Beko often find themselves improvising by taking tablets with an adult dosage and estimate a suitable dosage for a child. Something that she says puts a child at risk of overdosing or not getting an adequate dosage.
Alison Best from TB HIV CARE’s communications unit says that a paediatric formulation TB treatment was launched in 2015.
“The child-friendly TB treatment was developed by TB Alliance and its launch was announced at the 46th Union World Conference on Lung Health in Cape Town.”
Several countries have since gone ahead and rolled out the treatment and, as of this year, a million courses have been procured in 93 countries.
According to Best, getting the formulation approved has been a threefold struggle in the country.
“The South African Health Regulatory Authority (SAHPRA) itself was undergoing a period of organisational transition and it seems as though there has been a backlog in decisions in general. Children with TB are generally not infectious to others and therefore may be perceived as a low public health priority. Children must usually rely on adults to raise and advocate for issues that affect them, and thus far we have been failing them on this issue,” she says.
She also adds that the regulator has approved the paediatric formula in late 2018, and the next step is apparently for the National Department of Health to put out a tender for the medication.
Davis Mahlatji from SAHPRA says that the organisation is dealing with the backlog in the registration of health products.
“In 2018, SAHPRA became operational and from that point, the board decided to try and deal with issues that are immediate and necessary. Those things are having to clear some of the applications that are in the backlog and also try to make sure that we intervene especially where we talk about innovation and research and development.”
The regulator also says that the formulation of medication that is suitable for children is an area that they want to go into.
“One of our recommendation as it is today, when a product comes to market we do ask a question to the manufacturers about the paediatric administration of the same product. We want them to go back to the drawing board to make sure that at least they develop this kind of formulation.” – Health-e News