Richard Echoku, 54, is one of many HIV-positive Ugandans on second-line antiretroviral treatment, having failed to respond to first-line drugs.
“They tested my viral load several times, but it was not suppressing yet I was taking the drugs,” Echoku told The Observer. “However, doctors realized I was not taking my medicine on time especially during stock-outs. Sometimes I could miss getting drugs in hospital for some days,” he said.
Jane Nassolo gets her medication from Kasangati health centre IV but for long the doctors had wondered why her viral load was not suppressing yet she was taking drugs daily, and on time.
“When the doctors asked me where I store my drugs, I told them at home in the drawer, although I used to take one tablet daily to my working place at the farm and keep it in the bush before I swallow it on time,” she said. “Then doctors realised the medicine I used to keep in the bush lost its quality and stopped working. That was why the viral load was not suppressing.”
These are typical cases and, according to Dr Peter Andrew Kalema, head, Antiretroviral Therapy (ART) clinic, at Kiswa health centre III in Kampala, treatment failure can lead to drug resistance.
“Treatment failure is when someone on ART treatment fails to respond due to poor adherence, which increases the viral load, while HIV drug resistance is when the virus has mutated or changed its shape, and even if you take the medicine properly, it’s not suppressed by the drug until you switch to another line,” he says.
“Of recent, HIV drug stock-out is adding a lot of misery to us as service providers in the ART clinics because we get very few drugs from National Medical Stores (NMS) which is not enough for our patients. We keep on begging for drugs from nearby health centres. When patients spend long time without taking drugs, they develop resistance,” Kalema laments.
He said the most affected patients are those on second-line treatment because their drugs are very expensive and are supplied in smaller quantities. Last December, says Kalema, most patients on second line were advised to buy drugs from pharmacies.
“The biggest challenge has been due to new UNAIDS guidelines of test and treat policy, where they recommended all people tested HIV-positive to start treatment immediately yet 40 per cent of HIV-positive patients were still on septrin because their CD4 counts were still high,” says Kalema.
“There was massive prescription of ARVs and the NMS stores cleared in December. Since then, we are struggling with stock-outs. Most patients are not getting enough drugs, which causes drug resistance.”
Dr Ivan Arinaitwe, also at Kiswa health centre III, observes that the ministry of Health recommendation for all patients failing on first line to be switched to second line also increased stock-outs. Arinaitwe points out that majority of patients on second-line drugs today were not budgeted for this financial year.
“The cost of testing a person resisting on second line to third line is Shs 800,000. Third-line drugs are also very expensive and can only be found in HIV centres of excellence such as Mulago hospital, Infectious Diseases Institute and Joint Clinical Research Centre,” he said.
Of the 5,900 people under Kiswa’s care, about one per cent are on second line treatment. Countrywide, about 5.7 per cent HIV- positive people are on second line.
One appreciates how troubling the stock-out situation is – given its correlation with drug resistance -- when you hear from Prossy Luzige. As programme manager, National Forum of People Living with HIV Networks in Uganda (NAFOPHANU), she has disturbing inside knowledge.
“Most health centre IIs and IVs in rural areas don’t have second-line treatment. When doctors shift you to second line, they refer you to regional hospitals where they order for second-line treatment,” says Luzige.
“But in rural areas, regional hospitals are too far from patients’ home and it becomes difficult for patients to move; hence, ending up abandoning drugs, becoming drug-resistant and dying.”
Both Echoku and Nassolo fear that if the government is failing to provide second- line treatment, then the more costly third-line phase is but a dream. Another threat to the fight against HIV comes in the shape of so-called voluntary drug holidays.
“Drug holiday means people stop taking drugs after finding out their viral load is suppressed. Others are deceived by pastors to stop taking drugs, while others are just fed up of swallowing drugs and abandon them,” she says.
She warns that the moment the virus is exposed to a drug holiday, it changes form and becomes resistant. All this, however, does not come anywhere near the dangers posed by stock-outs. For instance, Luzige remembers how last year many HIV-positive people in eastern Uganda developed resistance which forced NAFOPHANU to petition government.
With people’s lives being unnecessarily exposed to grave danger, a sinister truth has been revealed about why stock-outs persist.
Alice Kayongo, the regional policy and advocacy manager at Aids Health Care Foundation (Uganda Cares), says they have evidence that donor money from USAID which was initially meant to buy HIV drugs was used by government to pay off some of its debts.
“The donors communicated that since the money was pulled out of HIV treatment, we are likely to face stock-outs until May,” Kayongo said.
This is happening in an environment where Kayongo reveals that drug resistance is also occurring on account of many people objecting to taking new drug combinations. Some worry about the suspected side effects such as damage to the liver, kidneys and changes in body colour and weight.
“People don’t have faith in new medicine … without sensitisation,” she says.
“I was with an old man in Lyantonde hospital recently. He was in tears because he had moved a long distance and failed to get drugs on second line treatment. Second-line has been consistently out of stock yet many people have been shifted to it,” she said.
Worse still, stock-outs are affecting laboratory reagents used in testing for HIV viral load.
“In case the donors pull out completely, many poor people will die,” she says.
But at the health ministry, Dr Joshua Musinguzi, the Aids Control Programme manager, says “most people with HIV drug resistance come late to the hospital when the virus is already in advanced stages and they have low CD4 counts. The doctors can’t do much and they die”.
Musinguzi also blames stock-outs on health centres.
“They don’t make correct orders; right quality, right quantity, right mix and right type of drugs. [National Medical Stores NMS] can’t give them what they didn’t order for,” Musinguzi said.
According to the 2017 UNAIDS global report, by June, about 21 million people living with HIV were accessing ART, up from 17.8 million in 2015 and eight million in 2010.
As such, the cost of treatment remains very high. It is estimated by UNAIDS that $26.2 billion will be needed for the AIDS response by 2020 in low and middle-income countries.
Sources at NMS say the challenge facing health centres is that ARVs are ordered online yet most of them don’t have bio-statisticians.
“If a bio-statistician goes on leave and he or she is replaced with someone who doesn’t know the system... you find they put quantity in the place of unit, and this creates problems with suppliers,” a source said.
This confusion is further complicated by policy contradictions. Dan Kimosho, spokesman at NMS, acknowledges that the test and treat policy caught them off guard: they don’t give out drugs to expected patients as UNAIDS proposed. They only consider those who were ordered for.
“The donors tell health centres to order ART for expected patients not only for patients they currently have. Yet for us, we give drugs for current number of patients and advise them to make orders for expected patients in the next budget,” he said.