Why those fighting to have the medication might be misguided
Kampala, Uganda | FLAVIA NASSAKA | November 27 marked a twist in months’ long ping- pong between government and people living with HIV over government’s failure to provide the antibiotic drug Cotrimoxazole – septrin as part of the package of treatment to those picking their medications. People living with the virus decided to run to court such that the National Medical Stores and government is compelled to provide them with this drug that they consider vital. And, in their cause, they were joined by Health advocacy NGO Center for Health, Human Rights and Development (CEHURD).
CEHURD’s Muhumuza Abdul Kharim told The Independent that in addition to ordering government to immediately supply the drug to all people living with HIV picking drugs from facilities across the country, they wanted the people who went to court to be paid damages for violating their right to healthcare.
“The government has a constitutional duty to ensure that there’s uninterrupted provision of this vital drug to those who need it”, he said supplementing a testimony by one of the petitioners from Lira district, Chris Okwir.
Okwir had earlier told journalists that the government needed to act quickly for fear that, considering that they had not got their Septrin stocks since March, they might soon start suffering from opportunistic infections that the drug had kept away.
Okwir has never suffered such infections ever since he discovered he is positive, neither has he ever had challenges with Antiretroviral medications despite starting treatment in 2005. He is one of the unique cases; especially at his facility Amach Health Center IV in Erute South, where he picks his medications from. But he testifies most of the people he started treatment with have since failed on first line and have been moved to second line treatment. Others have died, including his 17 year old son.
Now, even as he is virally suppressed, Okwir still takes septrin religiously.
“I fear getting those infections. I saw my son die in pain. There was a second line drug shortage, he ended up getting cancer and died,” he says.
Okwir who is now a Community Linkage Facilitator has transferred his fears to his colleagues –such are clients that are too involved in their treatments that they are identified to guide their colleagues struggling to keep swallowing their medicines.
He told The Independent, that they recently almost staged a demonstration when they went to the clinic and were only handed ARVs without septrin. He advised them against it, and instead encouraged colleagues like Grace Akite to join him in suing government. About 4000 clients pick medicines from his clinic he says, he adds many of these are at risk of death as only pregnant women and children below 15 years are the only ones who have been getting septrin since March when stock outs at the clinic set in.
“At private pharmacies, each adult tablet of 960mg costs shs500 and the 40mg for children costs 200. You are supposed to swallow that every day. You incur this daily expenditure forever. We can’t afford it,” he says.
Such cries have come out elsewhere. For instance, Lawrence Kivumbi from Kiboga who is also among the petitioners and has been living with the virus since 2007 said he was already feeling the pinch. He says whenever he does not swallow septrin he gets strange pains that affect his productivity at work.
Many more stories like this have been coming out ever since government revised its policy from providing septrin to all to providing it to key groups that really need it. And, since March, pressure over government’s failure to provide the drug has kept mounting until the Global Fund offered to provide the National Medical Stores with Shs14billion worth of septrin.
The cries didn’t stop. Instead more threats and more pressure are being exerted on the government to continue providing the drug. But, is there really this huge need for the drug? If there is need, why isn’t government making efforts to provide this drug to all? What risks exactly does it pose when people continue missing septrin in their HIV drug packages?
‘No science to prove their claims’
We put this to an HIV researcher, Dr. Freddie Mukasa Kibengo; a scientist based at the Medical Research Council (MRC) Facility in Rakai. He says two major studies have been done globally on the use of the drug and MRC Uganda took part in one dubbed the COSTOP study where they found the drug has no added value to those who have been virally suppressed like Okwir.
He says according to guidelines, the drug should be taken daily by children below 15 years, pregnant and breast feeding mothers, and those that are poorly adhering to their ARVs that they have failed to lower their viral loads and have low immunity.
He told The Independent that while some refer to septrin as an antiretroviral drug, it’s actually an antibiotic designed to treat some bacterial infections like Pneumocystis; a type of pneumonia common among people living with the virus. He says the drug can also treat fevers, abscesses, coughs and other opportunistic infections that attack people whose immunity is low.
In 2000, the World Health Organization (WHO) recommended that all HIV-positive patients with CD4 cell counts below 500 cells per mm3 in sub-Saharan Africa take the drug to prevent infections. Following a halving of death rates in a large randomised study in an area with high levels of resistance to the drug, this recommendation was modified in November 2004 to include all HIV-infected or -exposed children, until immune restoration has occurred or HIV-negativity is demonstrated.
People living with HIV in Uganda were already using septrin when WHO came up with that guideline, according to Kibengo. He recalls while still a doctor at Rubaga hospital in 1996, septrin is all they had to give patients and that by 2000 ARVs were still inaccessible to many and so people continued to take the drug to keep opportunistic infections at bay. However, this continued even when ARVs became available.
A fellow physician, Dr. Stephen Mpande who has also treated HIV since the early days, says the irrelevance of Septrin in people who have been taking their medications correctly became more visible in 2016 when the country adopted the Test and Treat Policy where people were increasingly enrolled on treatment immediately after testing positive even when they still have not yet showed signs of infection. With the policy he says there’s no chance for people to deteriorate into getting opportunistic infections because the virus is arrested when one’s immunity is still high.
Now, Mpande says those that are asking for Septrin are misguided and do not know why they were taking septrin in the first place.
“It’s fear. Its psychological I think because there is no science to prove that septrin provides energy to people living with HIV or kills the virus”, he says,” Many of us have swallowed septrin for other reasons, cough and others.”
He says that the move worldwide is to give septrin through a case by case basis depending on each person’s needs. Even with the guideline for those who have suppressed infection to be removed from the Septrin list, the directive to health workers is to keep monitoring and assessing clients on adherence whenever they go to pick their monthly or three monthly packages.
For him, the current battles to get people to swallow septrin even when they do not really need it shows the gaps in sensitization where patients do not know why they take certain medicines yet for each medicine there’s a risk of side effects which are weighed against the relevance of the drug before prescribing it.
He says the lack of knowledge to him was first portrayed in May when while reporting on a stock out of septrin; major newspapers referred to it as an ARV.
Kibengo agrees. He says all the chaos might have been caused by wrong interpretation of the guidelines and the failure by health workers to relay information from researchers and government to the clients correctly.
“I am sure many health workers told them we don’t have septrin. You will only get ARVs this time and yet for such a thing where people know its where their life rely need to be properly educated and counseled”.
However, at the Ministry of Health, the Programme Manager for AIDS Control, Dr. Joshua Musinguzi, says they reached that decision after a committee of scientists advised them that it’s a waste and yet a whopping Shs29billion was being spent annually on procuring the drug.