Agenda 3: Updated gap analysis on pædiatric HIV treatment, care and support
By Angeline Chiwetani
Angeline Chiwetani is my name and I am speaking from a perspective of a woman living with HIV and a mother shall continuously share lived experiences, I am working with Widows Fountain of Life as a Director. Working directly with women living with HIV and widowed due to HIV related deaths where a lot many are still struggling with issues of acceptance, disclosure and coping mechanism…
Having been married at a young age and being in the comfort of a marriage where there was belief that one cannot acquire HIV in marriage. Getting an HIV test was not a priority then. Complexities of HIV within a family and within a marriage including hostility and abuse from the partner puts female spouse at greater risk, and however my extended family advised me to stay in this marriage (“it is the way marriage is….”) normalizing the abnormal, socialization issues; my lack of a job and finances further trapped me. This is a common story for millions of African women.
As my husband was sickly and dying, I sought an HIV test for myself and found out I was positive. By the time my husband died both my children were at the age of 3 and 7 yrs. Doctors gave me only 6 months to live and plan my things since l had tested HIV positive. But today thankfully both my boys, 19 and 23, are negative and l am still alive. The possibility that my boys could have been positive tormented me but in those days messages did not encourage mothers to take children for testing unless they were sick, very traumatic. Even then when the boys had a headache, it was a source of terror for fear that it could be HIV. This lived experienced for a mother who knew what she needed to do but could not do it was so painful that l ended up starting a support group of young mothers and young widows for social support.
After having taken forever to disclose to my children, Eventually I then disclosed to my sons at 13 years, and the other at 8 years. They had been suspicious as they had seen their father dying on my part l had waited for death which didn’t come and felt l needed to disclose to my children and they became part of my support system. With the passing of husband, the 3 of us became very close and the boys became my treatment buddies.
I turned my challenges to be opportunities, my HIV experience motivated me to get training and become a peer counsellor. Mothers of children living with HIV would come for counselling trying to deal with disclosure issues to their children . I always remind them that disclosure was a process so we took steps and precautions at a time. Also addressed stigma and discrimination to their children. I then tested the boys when they were 20 and 16, 3 years ago. Now the boys are 19 and 23, and they are adolescents dating, and navigating a world with HIV. At family level we talk about SRH and HIV, reminding them that there are also youths of their age that were born HIV positive but who are also healthy that one can not tell. They now bring issues to the table for discussion.
Key things that we all need to put in place is Access to information, especially for the hard to reach areas, my special mention to people who have hearing and visual impairments, they are part of our communities. As communities we are the foot soldiers of our health system, the more we are equipped the better the communities become. We can not manage to watch mothers and children living with HIV. Let us close the tape…
- There is still an urgent need to remind adult women that they too can acquire HIV. Marriage is not a safety net. HIV cut just pass through.
- Communities, especially older mothers and aunties, push women and girls into marital vulnerability, trapping them into dangerous relationships saying “this is what marriage is”. These enablers should be stopped. There should be a serious effort to stop this, and not just a weak programmatic response that dances on the edges.
- There should be greater clarity about testing adolescents, especially those whose mothers are living with HIV. Case-finding for children living with HIV should begin with the positive mother but should test all her children, not only the smaller (under 10).
- Programs tend to prioritize girls, but they should really target both boys and girls. This way the boys do not end up ignorant and oppressing girls when they become husbands.