By Sharon Atieno
In October 2019, Austin was brought in by ambulance and admitted to the Nsanje District Hospital in Malawi. He had lost a lot of weight and was frequently urinating.
He had tested positive for HIV in 2016 and had been receiving antiretroviral (ARV) treatment ever since, apart from a three month period when he was having a conflict with his wife and stopped taking his medication. A decision that had immediate consequences.
“I quarrelled with my wife; I told her it would be better for me to die. I stopped taking my medication for three months and soon got worse,” he remembers.
25-year-old Lita is sitting with her parents in the shade outside the female ward at Nsanje District Hospital. For her it all started when she wasn’t feeling well at the beginning of the year. Her family brought her to the hospital where she tested positive for HIV.
Lita was advised to start taking ARV drugs. But after she was discharged, she stopped taking her medication and, as a result, she started to get sick again. Lita was re-admitted to Nsanje District Hospital in October with fever, bloated stomach and leg swelling.
Situations like Austin’s and Lita’s are common not only in Malawi but across Africa. Many people fail to adhere to their HIV treatment for various reasons.
Other issues are to do with distance and economic challenges. The nearest health facility can be far away and the transportation to get there can be expensive. Instead of going to the hospital, many have to prioritise working to survive and support their families.
“People also lack basic knowledge about the warning signs of HIV. Even though Médecins Sans Frontières/Doctors Without Borders (MSF) has health promoters that go to communities to raise awareness about danger signs, we can’t reach everyone,” says Kamanula. “In the end, by the time they come to the hospital, many people are already very sick.”
Hundreds of thousands of people continue to die from advanced HIV, also known as AIDS, because countries are still ill-equipped to detect and treat people suffering through advanced stages of the disease, a new MSF report reveals.
Delays in responding quickly to treatment failures and interruptions sets back the progress made in reducing HIV deaths.
The report, No Time to Lose, spanning 15 countries in Africa and Asia, finds that despite the existence of World Health Organization (WHO) guidelines since 2017 on advanced HIV, governments have been slow to include them in national guidelines, while meaningful implementation and funding lag even further behind.
The WHO guidelines recommend the roll-out of easy-to-use rapid tests to assess the status of people’s immune system (the CD4 cell count), and to diagnose the most common and deadly opportunistic infections, such as tuberculosis (TB-Lam urine test) and cryptococcal meningitis (CrAg test).
However, there are significant gaps in implementation of the minimum package of care for advanced HIV in all the 15 countries (Central African Republic (CAR), Democratic Republic of the Congo (DRC), eSwatini, Guinea, India, Kenya, Lesotho, Malawi, Mozambique, Myanmar, Nigeria, South Africa, South Sudan, Uganda and Zimbabwe) monitored. Many opportunities to reduce avoidable mortality are being missed.
“There is no way the world will reach the target of less than 500,000 deaths from AIDS in 2020 without decisive action on dealing with retention to care, treatment interruptions and resulting mortality,” says Dr Gilles Van Cutsem, MSF Senior HIV Adviser.
“In the past, the very sick patients we saw were those who did not know they had HIV. Today we see more and more people who have been treated before, but stopped taking their medication and fell seriously ill, and people whose treatment stopped working.”
More than two-thirds of patients with advanced HIV that are admitted to the MSF-supported hospital in Nsanje arrived already very ill and have been on antiretroviral (ARV) treatment before.
At MSF’s Kinshasa hospital (DRC) this figure is at 71%. Among these, more than one in four people will die because the disease was too advanced when they reached the hospital. These deaths could have been prevented.
Since MSF made the rapid tests available in health centres in Nsanje district, the number of deaths at the hospital has decreased from around 27% to less than 15%.
The report further reveals that only eight of the 15 countries surveyed use rapid TB-LAM to test for advanced HIV patients.
Malawi plans to roll them out to 230 health centres in 2020, and pilot programmes to introduce the test are being launched in Lesotho and Nigeria. Another pilot was recently completed in Kenya before a possible national roll out of the test.
In addition, only a third of the countries recommend using the rapid test for Cryptococal meningitis (which accounts for 15-20% of all advanced HIV-related deaths) for patients with very weak immune systems, including in Kenya, Mozambique, South Africa, South Sudan, Uganda and Zimbabwe, but most of these countries have not yet implemented that recommendation on the ground.
The global UNAIDS 90-90-90 targets (90% living with the disease knowing their status, 90% of people living with HIV get treatment and 90% of people on treatment have undetectable virus levels in their body) assumes a succession of stages in a linear way, but the reality is that the model is circular for lots of people who need to go back to the testing, and initiating phases after having passed those stages in the past.
“We all need to accept that the job is not over once people are on treatment and doing well. We have to be there for people for the whole treatment journey, which means people’s entire lives,” says Florence Anam, MSF’s HIV/TB Advocacy Coordinator and lead author of the report.
“We will not end the ravages of HIV by digging more graves, but by doing all we can to keep people healthy, no matter where they live and what their life circumstances are. They must be supported mentally and medically as close as possible to where they live.”
Some countries like Lesotho, Malawi, Kenya and Uganda have started making initial progress in advanced HIV guidelines implementation, but financial support is still needed.
The report calls on countries, donors and implementers to have AIDS high on their resource allocation, policy development and implementation agenda within the HIV/TB response.