Life for people with HIV would be much easier if they had clinics within walking distance and if they spent less time in queues that stretch for hours to get their treatment.

These are two chief recommendations that emerged from the preliminary analysis of some results of regional research into access to antiretroviral treatment (ART) and related care. The research, coordinated by the African Jesuit AIDS Network (AJAN), is being conducted by Jesuits AIDS projects, by Jesuit social justice centres and by other NGOs partnering with us in several sub-Saharan African countries. Today, World AIDS Day 2014, we share findings from Kenya, Tanzania and South Africa.

AJAN joins people living with HIV in calling for ever more accessible and comprehensive treatment. This includes community-based care; better-staffed clinics; constant availability of antiretroviral drugs (ARVs) and related tests; free and available treatment of opportunistic infections; and nutritional support – gaps in these services were identified, to a greater or lesser extent, by the people who were interviewed.

AJAN lauds the steps taken to roll out treatment: overall, most of the 380 people interviewed seemed happy with the access, extent and level of care they receive. Most said they adhered constantly to their medication (86%), their health was good and they were eager to learn more about how to handle their condition: “I want to know more and get empowered.”

Some 96% said they get their ARVs for free and 79% described their access as “good”, the highest category. Over 90% expressed satisfaction with a range of components of their care, including the attitude of healthcare staff, the availability and usefulness of counselling and information about their treatment, and arrangements for clinic follow-ups and to pick up their ARVs.

Kenya, South Africa and Tanzania have worked hard to expand access to treatment. According to UNAIDS, at the end of 2013, in all three, the estimated percentage of adults living with HIV receiving ART was around 41/42%.

However many respondents underlined the excessive time and money spent to access treatment as problematic. They called for more clinics, including mobile ones in remote rural areas, and more staff to cut down on waiting times of up to 8 or 10 hours.

“At government clinics, they should first track the very sick ones, and have fast queues just to pick up medication. I go there early in the morning at 5am and finish about 2pm. More staff are needed,” said one.

Many said they could ill afford this time and in fact work was given as a reason for missing medical appointments. Another reason was transport; one-third of respondents said lack of money made clinic visits difficult: “There is the need to bring services closer to the people as sometimes transport fares may be difficult to afford.”

“Practically all the people interviewed have facility-based care, which is reportedly the case for 95% of HIV services in Africa,” said Fr Paterne Mombe SJ, AJAN Director. “We wish to build on some of our best practices, such as mobile clinics, to bring a full package of diagnosis and treatment services closer to people in need. We will also be considering innovative interventions like Point-of-Care Testing, which means that blood tests can be carried out in the community, allowing for swift diagnosis.”

The treatment of opportunistic infections also emerged as a challenge: nearly one-third of people interviewed said they were sometimes unable to buy prescribed medications because they couldn’t afford them and one-fifth because they were out of stock.

Testing was another lacuna: just over half said their CD4 count was taken regularly when they went for follow-ups, and less than one-third had their viral load measured. “All AIDS clinics should have machines for crucial tests like CD4 and viral load to avoid desperate movement by those infected in search for these tests,” said one.

The respondents proved keen to be kept updated about their health and treatment, “it is my health and responsibility as a person”, to know about treatment side-effects, about avoiding re-infection, about learning how to live longer and positively. They also called for more counselling services and said support groups were very helpful.

“I have seen people die, so whatever health concern I have, I speak out,” said one person.

The majority considered the clinic staff as allies in their personal struggle against AIDS. Around 91% said they felt open to share concerns with the staff, who they described as friendly, professional, supportive, open, trustworthy, respectful and ready to take time to listen.

“They have the knowledge and a willing heart,” said one. And another: “I feel comfortable because they make me feel like any other person and don’t judge me.”

Some made a direct link between their willingness to be open and the support they may then expect to receive: “I want to be helped and this can only happen if I share with the staff.”

This openness, in turn, arose from accepting one’s HIV-positive status. “I have made peace with my situation and condition and, as a result, I feel free to ask when I have questions.”

However, the people living with HIV clearly felt there was room for improvement among the clinic staff too: 37% felt the staff were too busy, 14% said they did not have time to do a proper check-up and 8% said either that the behaviour of staff was somehow negative or that they did not respect confidentiality.

One respondent confessed: “I am scared of them at times”, while others said the nurses were “rude” and “undermined us”. Many blamed the heavy workload: “The health personnel are after clearing the queue so no time for questions”, and “You always need to talk very fast so that other clients can be served”.

Overall, however, the picture that emerged is a positive one and the people interviewed called for sustainability of treatment so that they may continue to be able to live well and to support themselves and their families.

In the coming weeks, AJAN will be analysing research undertaken in other countries including Burundi, DR Congo, Madagascar, Malawi, Togo, Ivory Coast, Zambia and Zimbabwe.