People living with HIV in Malawi face ongoing challenges with staying on treatment. The reality is that people must travel long distances, often spending hours walking on foot, to the health centre. When they arrive, at times they face poor attitudes from health workers, worsened if they miss an appointment and can be sent to the back of the queue as punishment. The human resource crisis means that the few healthcare workers in place have limited time with people living with HIV and they often aren’t able to give people the information they need to successfully stay on HIV or TB treatment. Services that are not integrated cause people to be sent from pillar to post, waiting in multiple queues.
These and many other challenges are detailed in “Liu Lathu Mu COP21” — Chichewa for “Our Voice on COP21” — an advocacy document aimed at influencing PEPFAR (the United States President’s Emergency Plan For AIDS Relief) as it determines how it will spend millions of dollars on HIV and TB programmes in Malawi through its Country Operational Plan (COP) for 2021. Like earlier editions, this edition uses data collected through community-led monitoring and outlines recommendations and priorities from people living with HIV, key populations and civil society organisations.
Liu Lathu doesn’t just focus on the existing problems, however. It also clearly outlines a number of community-recommended interventions that would improve the state of the national HIV and TB response, including measures to help people to start and stay on treatment.
- Hiring more Expert Clients who can ease the burden on overstretched healthcare workers, who get out into the community to do HIV testing, counselling, treatment literacy, and who trace people who have missed appointments or disengaged from care.
- Improving healthcare worker attitudes towards people living with HIV, young people and key populations to ensure they feel supported instead of discriminated against at health centres.
- Funding the rollout of widespread community-led treatment literacy education, increasing people’s knowledge about the importance of adherence, would help keep more people taking their daily pills.
- Resuming teen clubs so that young people can collect their HIV medicines refills in a safe environment, without having their status’ known in the community, with the support and encouragement of their peers.
- Ensuring the widespread availability of integrated cervical cancer screening and testing services so that more women can get tested more easily, can get their results, and where necessary can get the treatment they need.
- Funding the rollout of easier to take TB prevention medicines that are taken for a shorter period of time and cause far less side effects.
Three people involved in fighting for these critical changes, Ellen, Winnie and Monica, are sharing their stories and their prescriptions for change in order to show PEPFAR, and the government of Malawi, what it means to interact with the current, failing healthcare system, and why the changes activists are demanding in COP21 are urgently needed.
Ellen faces long waiting times when she goes to collect her ARVs at the health centre. If for some reason she misses an appointment, she is sent to the back of the queue as punishment. Ellen is satisfied with her longer supply of medicines, but still thinks improvements need to be made at the health centre to encourage people living with HIV to keep going back.
Winnie’s teen club was suspended when COVID-19 hit. Now she must collect her ARVs at the health centre instead. She misses the support and encouragement of her peers and the safety and privacy of the club. Other young people she knows have stopped ARVs altogether since the clubs were suspended. Winnie thinks that better solutions could be found to protect young people from COVID-19, while still keeping the clubs open and making it easy for them to adhere to HIV medicines.
To avoid paying for multiple trips to the clinic, Monica wanted to collect her ARVs, get her viral load test done, and screen for cervical cancer at the same time. On the day she went she was sent from pillar to post, waiting in multiple queues, until she had to leave to get to work on time. The staff then shouted at her for leaving. Monica thinks that services should be better integrated to make it simpler for people to access them all at once.
Ellen struggled to take the medicines to prevent TB infection and eventually stopped before the 9 months was up. She got painful side effects that made it impossible for her to continue. She was going to explain this to the doctor, but no one ever asked, so she simply stopped taking them. Now Ellen could receive a newer medicine to prevent TB that is easier to take, with fewer side effects, that is taken just once a week for 12 weeks.