Speaking out and saving lives

Margret Noel is 32-years-old from Simbu in the highlands of Papua New Guinea (PNG). Life has not been easy for Margret. In 2002 she came to live on the streets of Madang as she had to leave her abusive husband in her village. With no real education, she set up a life selling buai (betel nut, a mild stimulant) and cigarettes on the street.

In 2005 she got married to another man from Simbu and life began to look brighter but a couple of years after they got married her husband was diagnosed with HIV. A year after his diagnosis Margret attended self-care training to learn how to look after her husband, it was during this training that she learnt about how HIV is contracted, the importance of using condoms which previously she didn’t know and that she also needed to be tested for the virus.

“When they told me that I was HIV positive I broke down, I was angry because I hadn’t been tested sooner and I knew that I needed to begin treatment straight away.”

Soon after, she was tested at Id Inad clinic in Madang where she found out that she was also HIV positive: “When they told me that I was HIV positive I broke down, I was angry because I hadn’t been tested sooner and I knew that I needed to begin treatment straight away, but I was able to find strength as I knew that if I took the medicine I would be fine as I had learnt about anti-retroviral treatment during the self-care training.”

Following on from her diagnosis Margret felt like she had to do more to help people with HIV and raise awareness about the risks of catching the virus. Initially she became a community health based carer where she gave care and support for patients who have reached the final stages of the virus.

In 2010 she became a peer educator for FHI 360 and later for Voluntary Service Overseas.  The USAID funded, Strengthening HIV/AIDS Services for Key Populations project, works through enhanced peer educator outreach to specifically target hard to reach, key populations. The key populations that are the core focus of this work are men and women in transactional sex, men who have sex with men, transgender and high-risk men and women who are having sex with multiple partners.

Peer educators are selected from members of the high-risk groups to reach out to the key populations.  In this role Margret goes to identified hotspots looking for potential clients to encourage them to get tested for STIs and HIV and to seek proper treatment. She also speaks out openly at big events about being HIV positive: “Now I have the confidence to stand up in public and talk about what I have learnt. I share with people that I’m HIV positive, I tell them about the work that I do and that I take the medicine. The first talk that I gave was at a school. When I began to speak I couldn’t help but cry, it was really hard to share such a personal experience and disclose my status to people. It was the children’s first time to see someone with HIV so they were very surprised because I didn’t look sick. Because I don’t have any sores they thought that I was lying so I showed them the medicine that was in my bilum and told them that it was helping me. I told them that if they hug me they won’t get HIV and was able to tell them about the ways that you contract the infection.”

HIV is still very much a taboo subject in PNG but through Margret disclosing her status and giving awareness talks, people approach her on the street for more information and look to her as a role model: “When people see me on the street they come to talk to me. They ask me where to go to get treatment. Often people don’t speak out when we are in the talks or discussions but they recognise me and find me when I’m in town so that they can talk confidentially. Since I disclosed my status I have helped so many people; people give me presents from bilums to food to say thank you.”

Through her work Margret can now read and write in English. Her courageous actions have made a real difference to people in her community, she has assisted over 50 patients in community based care and over 50 of her clients have been diagnosed with HIV when they have been tested at the clinic: “It makes me really happy to have the talent to save people’s lives, by getting them to go to the clinic for testing and I help with ensuring that patients continue to take their medicine regularly. Other peer educators are previous clients that have come to me to find out more information and are now helping other people who are living with HIV.”

“It makes me really happy to have the talent to save people’s lives, by getting them to go to the clinic for testing.”

In her community Margret is well-respected and her friends and family are supportive. Her adopted 4-year-old daughter helps remind her to take her medicine at the right time: “Now I am strong. Now that I have disclosed to people I get a lot of respect and I have been able to share my knowledge and help them to understand the importance of safe sex, getting tested and accessing the right treatment.”

To live and inspire

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.”