A few years ago, Rehema Bakari, a resident of Morogoro used to sit for hours at the hospital bench waiting to get her antiretroviral drugs.
She would at times get to the hospital at five in the morning and get her ARVs at around one in the afternoon.
Many found the long wait inconveniencing especially given that those who did not know you were HIV positive were likely to find out you were there for HIV drugs. When the disclosure of a HIV positive status is likely to provoke a negative response, many choose to keep their status to themselves. Even if it means making sure no one sees you at the HIV clinic.
Recent studies indicate that people on antiretroviral treatment still experience stigma. The social stigma is attributable to community members’ perception that all HIV positive people were promiscuous or engaged in sex carelessly and that being on medication means one is about to die.
This is why some people choose to take their secret to the grave rather than face the stigma associated with HIV/Aids. Non-disclosure on the other hand is likely to lead to poor adherence to antiretroviral therapy. Some people would rather go off medication rather than be seen queuing at the clinic for ARVs.
“Sometimes I had to wait for at least seven hours on a hospital bench from five in the morning to 1pm to access my ARVs. It was intolerable. But now I receive them at home, which apart from saving me time has also helped fight stigma in a way,” says Rehema.
The 44-year-old is a member of Busara Group and chair of Busara Village Community Bank, established in 2018 by people living with HIV for the aim of supporting each other through the journey as well as financially.
Through Busara Group, members no longer have to go all the way to the clinic for their ARVs. This has been made possible by Jhpiego’s Sauti project, which among many other things seeks to make sure those on ARV treatment access their medication without any hitches.
Funded by the United States President’s Emergency Plan for AIDS Relief through the United States Agency for International Development, the project focuses on provision of free HIV testing services and distribution of ARV drugs to people living with HIV in Morogoro urban and rural.
“We distribute ARV drugs to atleast 75 groups of people living with HIV in Morogoro urban and rural. Every member of the group receives three containers of ARVs, each consisting of 30 pills after every three months,” says Jhpiego’s ART Outreach Coordinator for Iringa Zone, Nancy Ochenge.
Nancy says the idea is to complement government’s efforts and strategies to ensure that ARVs are accessible to people living with the infection in order to control HIV spread and address stigma by distributing the medicines to relevant people in their respective areas.
A recent study titled ‘Experiences and Impact of Stigma and Discrimination among People on Antiretroviral Therapy in Dar es Salaam: A Qualitative Perspective-2016’ shows that people on ART experienced different forms of HIV-related stigma. These include verbal, social and perceived stigma, which is the fear of stigma associated with disclosing one’s HIV status.
Hilda Rajab, a petty trader in Morogoro who is also Busara Group chairperson says her husband, a former long distance driver, has completely refused to go to the clinic for ARVs. He is one of those people who would not want anyone to find out about their HIV positive status. He is not ready to be seen at the clinic for fear of bumping into friends and relatives who are not aware of his HIV status.
He does not want to be stigmatised.
When Hilda found out she was HIV positive in 2016, she informed her husband about her status and advised him to go for the test too.
His results came out positive and he has since been doing everything possible to keep the secret to himself. Because he does not want anyone to find out that he has HIV, his wife Hilda is the one who gets ARVs for him.
Like Hilda’s husband, there are many people out there who fear going for ARV treatment for fear of stigma. Jhpiego’s move to take ARVs to people’s homes has been of great help to such people for they no longer have to skip doses or avoid treatment.
If such service is availed throughout the country, government’s efforts to ensure every person infected with HIV is put on ARV treatment as a way of preventing further spread of HIV will be a success.
“People living with HIV infection fear negative consequences if their health status becomes known to their close relatives. They experience friends and relatives gossiping and ostracising people living with HIV and do not want the same to happen to them,” says Jhpiego’s Community ART specialist Anna Mwakibete.
She says the fear of stigma prevents some users of antiretroviral drugs from seeking support, even when they are seriously sick, hence it affects their adherence to ARVs.
Rehema Bakari concurs. She herself has been hesitant to disclose her status to her relatives for fear of being stigmatised.
“I find it difficult to take my medication when relatives and neighbours are present in the house because I have never disclosed my status to them. I frequently face this problem of trying to hide my medicine from others,” says Rehema.
When she was diagnosed with the infection in 2010, her CD4 count had dropped to 2, but after prolonged ARV use her CD4 count went up to 76. Rehema recalls how she was previously forced to wake up early in the morning at 5 Am to go to Sabasaba Health Centre to access ARVs. She is happy because that is now history.
CD4 cells (also known as CD4+ T cells) are white blood cells that fight infection. The more CD4 cells you have the better. These are the cells that the HIV virus kills. As HIV infection progresses, the number of these cells declines. When the CD4 count drops below 200, a person is diagnosed with Aids.
Hilda Rajab who is the chairperson of Busara savings group says that apart from enabling members like Hilda more convenient access to ARVs, the group also helps members save and access loans.
The group has helped improve members’ economic status as they now are able to secure loans to meet their basic needs such as proper food and health services. Every member contributes Sh12, 000 per month.
Joseph Kipolelo, 50, a member of Busara Group and the accountant of Busara Village Community Bank, highlights some positive impacts of the project, saying the programme has enabled him to easily access ARV drugs, unlike in the past where he used to wait for at least two hours at the hospital to access them.
Joseph was put on ARVs immediately after he was diagnosed with HIV infection in 2014.
“I lost my wife to Aids in 2009. I have been on ARVs for five years now and I have since been progressing well,” says the father of one daughter who works as watchman at a petrol station in Morogoro town.
Following his tight work schedule, Joseph admits that he sometimes used to skip medication as he did not have time to go get them at the hospital. With the current arrangement, he is sure of getting his medication on time.
Over a decade since Tanzania increased ARV provision, stigma and discrimination against people living with HIV still prevails. Stakeholders in the fight against HIV/Aids have raised concern on the need to put more efforts in place to reduce stigma and discrimination in order to maximize positive treatment outcomes.
It is estimated that the number of people who are currently receiving ARVs has increased from 200, 000 in 2016 to 1,103,016 in March 2019.