As Tiny Tim & Friends grows in terms of patients, and the number activities we undertake to provide additional layers of support to those patients, we must also grow our support networks around the world. In Lusaka our community volunteers provide an essential part of our work in: helping us access individuals who would have been previously unknown to us; in allowing us to provide home based support to our patients across Lusaka; and in ensuring we can provide follow ups to everyone we test as HIV+ in order to ensure they are getting the right medical care and treatment they need to lead a healthy life.
We specifically work with HIV+ women in the community to help support our work and to provide HIV awareness and sensitisation. Their personal insight into living with HIV and their understanding of the issues the communities are facing enables us to have a much greater impact on the lives of the children, adolescents and pregnant women we work everyday to support.
One of our community volunteers is Margaret, 45, who after her diagnosis of being HIV+ decided she wanted to help others:
“ I tested as HIV+ in 2004, I was scared at the time because I had three children and was worried they would also be HIV+. I knew a little bit about HIV but mainly that it could kill you and knew nothing about being able to live a healthy life. I got all of my children tested and they were all negative. I was put on ARV’s and started to learn more about HIV. After I understood more I decided I wanted to help other people who were HIV+ and help others to understand more about HIV. So in 2006 I started volunteering at George Clinic doing filing, helping with follow ups and monitoring the growth of malnourished children. Then one day a lady came to the clinic and told me about Tiny Tim & Friends and asked if I would be interested in volunteering with them to help identify HIV+ children and that is how I came to work with TTF.
My favourite part of working with TTF is when you find someone in the community, get them tested and they get enrolled into the clinic because I know then that they will have a better chance in life to be healthy.
There are a lot of problems in the community which I see which can lead to increased HIV transmission or ill health for people living with HIV. There is no employment, people do peacemeal work selling vegetables, cleaning, collecting bottles but nothing consistent. The best job for a community member is a security guard but you need to be healthy so if you are HIV+ and not on treatment you can get sick a lot and then end up losing your job. Because people have little money to survive some people resort to crime, stealing from peoples homes. Alcoholism and substance abuse is an issue, especially for young men and women. They have nothing else to do so soon turn to substances for entertainment. This can lead to promiscuity or sexual assault for women. Additionally a lot of young women and children are assaulted by family members. People are afraid to report it to the police for fear of judgement that they have been out drinking or that their family member (who could be a wage provider) will go to prison and their family will suffer more.
Its also not easy for young women to get condoms, vendors wont sell to them and they don’t feel empowered to ask a man to wear a condom in case they are accused of being promiscuous. I see a lot of teenage pregnancies because the girls are vulnerable. There are a lot of orphans in the community so they are also left vulnerable.
The teenagers are the ones who need education the most, to understand the importance of safe sex. And for young girls to be empowered and feel confident to insist on safe sex. In Zambian culture that is a difficult thing to overcome.
There is also a lot of education needed on the dangers of stopping medication once you have started it. And the importance of talking to your health care provider if you are experiencing side effects. A lot of the time in the community if someone is HIV+ and gets sick people can stop caring for them as they expect them to die but that isn't the case any more with medicine. People need educated around this.
I try and talk to 2-3 people every day, I tell them I am HIV+ and they are surprised as I am healthy – they have a lot of questions about medication and side effects. A lot of people are also afraid of getting tested but when I tell them I am HIV+ they feel a lot more comfortable, and a lot less fearful that it means an early death.
I want to go back to school so I can continue to work with TTF and do even more work with them to support HIV+ individuals in the community – to help children and families to be less fearful and ashamed and to be rid of the stigma that exists around HIV so that people can lead more open lives and transmission is reduced.
Since I found out I was HIV+ I have also had another child who is very healthy so I know it is possible to lead a healthy normal life with the right treatment and support, like TTF provide. I want others to have the same opportunities I have. “