At first glance Angela Kaupa may look like just another tiny grandmother with dimpled cheeks and a quiet, reserved demeanor but she is an exceptionally important figure within HIV support and is renowned within her community in the Eastern Highlands.
Angela is President of Minivava (to live and inspire), a provincial support group working with people who are affected by the virus. She is an extremely significant figure within the Catholic Church’s health programme supporting people living with HIV and AIDs. Angela is also HIV positive.
She was born in a small village called Bonguglo in the north of neighbouring Chimbu province, but has been living in the beautiful, mountain enclosed, Eastern Highlands town of Goroka for 23 years. She is married with four children, a boy and three girls, has four ‘bubus’ (the endearing Tok Pisin word for grandchildren) and she’s expecting more!
She found out that she was HIV positive in early 2002 when she was very sick and admitted to hospital: “At that time HIV was very new in the country and there weren’t that many cases. I have been on antiretroviral treatment (ART) since then and it keeps me healthy but not completely fit. Last year I changed my treatment when my CD4 count dropped to 280. I had a lot of side effects for a month including blisters on my hands and arms as well as feeling very run down.”
Her husband and all her children are free of the virus. Angela’s family is all fully aware of her status and they understand. This isn’t the case for the majority of people living with HIV and AIDS in Papua New Guinea.
One of the biggest problems that people living with HIV are facing in the Eastern Highlands province is the number of defaulting cases. These are the people who are found to be positive but either don’t start treatment or cease taking it at some later date. It is estimated that over half of patients in the province don’t take the ART which would keep them fit and well.
“It can take up to five hours just to get to an aid post, to get to a hospital can take a whole day.”
There is no centre or transit house for people who come from remote places to hospital or clinic so they have to sleep rough when they do. Many will end up sleeping on Angela’s floor. In PNG remote means that there are no road links so the only way to access the aid posts is by foot: “HIV is a condition for life and there are many barriers to people accessing the correct treatment. It can take up to five hours just to get to an aid post, to get to a hospital can take a whole day. When you get there the hospitals aren’t well equipped to deal with HIV patients and often don’t have a working CD4 count machine (to measure the important immune system cells) and the only viral load testing machine is in Port Moresby.” Viral load testing helps ensure the HIV is being controlled by the ART and can spot problems before people get sick.
There is major discrimination towards positive people within rural communities: “Most people with HIV are pushed out of their communities and have their land taken away so they are forced to live in settlements. People believe that the individual will infect others through food and water; with no land it is very hard to get food as they no longer have anywhere to grow crops and no income. People are even forced out of their church communities through fear and judgments made by others. Mostly I see that people stigmatise themselves. When the family breaks apart other people make the assumption that it is linked to promiscuous behavior.” Often the family will neglect the individual infected with the virus. Caregiving can be a lot of work and requires training so very often people living with HIV are left completely on their own.
Single mothers and widows really struggle to make a living. Unlike positive men it is expected that women will stay single for life so they face a real gender inequality. Even HIV positive children face major discrimination and although rare, in some cases cannot continue their education. When it is discovered that they are infected the board of management will find reasons not to accept the child. Despite this being illegal it is still happening in the province and there is no money to fight such discrimination at court.
Previously a teacher, Angela moved from her role in education to be the HIV coordinator for the Catholic Diocese of Goroka. She is responsible for making sure that staff facilities are adequate, runs workshops for women to learn new skills and is trying to set up a teachers network. She is also the elected President of the community organisation Minivava. This group provides peer support to people living with the virus and there are monthly meetings where the group shares stories and support each other. She is very proud of the parish coordinators, care network and future plans to support children with HIV to help pay for their school fees. She is an invaluable asset within the support chain and a beacon of hope for people faced with such substantial struggles.
She juggles many responsibilities and is whole-heartedly dedicated to supporting people: “To start off with I didn’t realise how bad it was and I just accepted it. At that point I decided that I had to be strong and I wanted to show other women that you can live a normal life and I try to be a positive role model. Often people view me as the sickness, then as a woman and then as a representative last and that can make it hard but I love the work that I do.”
“I decided that I had to be strong and I wanted to show other women that you can live a normal life and I try to be a positive role model.”
Charlie Taylor, VSO volunteer, is working across Goroka, Lae and Mount Hagen capacity building with the provincial groups of people living with HIV The approach of building skills rather than giving money means that the skills stay with the people. Angela agrees with this approach, “I don’t think aid money coming into the country gets past the top level and doesn’t get to the people on the ground. With the early response programme money was dished out but it didn’t go the right place and no skills were given. I have been to many parts of the country and people are still lacking basic information on HIV and AIDS. Too much is lost on policymaking and administration. We wish that VSO could have come five years before and extended the programme to more districts, if they had come sooner we would be in a better position. Sharing skills with us enables us to live a better life.”