From Prevention to Palliative Care: Changing the Face of HIV/AIDS Outreach in Rural Nigeria
By Eyitemi Mogbeyiteren — December 13, 2012
In 2011, three members of our outreach team were kidnapped in the Delta State of Nigeria. We were held captive for several weeks, during which we were repeatedly raped, and only released after a ransom was paid to the kidnappers. Soon after, we learned that all three of us had tested positive for HIV.
My name is Eyitemi Mogbeyiteren, and I work with Women for Empowerment, Development and Gender Reform. Our goal is to ensure that poor grassroots women in the South-West region of rural Nigeria have information on their bodies and health, adapted from the trusted book Our Bodies, Ourselves, so they make choices that protect their reproductive and sexual needs and dignity.
HIV is rarely talked about in our community, and people living with the virus are inevitably discriminated against and cast out by their friends and family. Over the years, our organization has worked hard to unravel myths about the virus — its transmission, prevention and treatment — and fight the terrible stigma and isolation faced by those infected.
But as more people become ill, we continue to see families despair and grieve as their loved ones die without medicines, care and support. Drugs cost approximately $15,000 per person in my community — an amount that is beyond the grasp of many people!
After being diagnosed, I experienced a lot of the same discrimination and isolation. I was shunned in my community and my family stopped speaking to me for a long time. With my own health failing, there were many moments when I felt I could not live, could not stand people saying things about me.
It felt like the end of the road, until I decided to raise my voice and change the fear and shame into something positive.
We are now expanding our HIV/AIDS outreach to include palliative care — care that relieves not only the physical but also the emotional, spiritual and socially generated suffering faced by a person infected with the virus. It is one of the most valuable services that can be offered to someone with terminal illness and their family. Unfortunately, it’s availability in my community is zero!
Using Our Bodies, Ourselves as our tool yet again, our plan is to train ourselves on this holistic and critical model of care, and bring our services to our women via support groups and home visits. We will also develop a training manual for other caregivers, including family and community health workers, so they can comfort their loved ones and clients.
And, to get word out, we will organize an “itinerant exposition” on board a bus. This vehicle — our Anti-Rape, Anti-Kidnap and HIV/AIDS Bus — will carry 12 activists around the country for 18 months, unleashing our materials, our knowledge and our passion. It will allow us to serve women beyond our community, to empower them with information on HIV/AIDS and self-defense skills to protect them from rape and kidnap.
And if we are able to raise the funds, we will distribute the drugs needed to prolong life — drugs that are the right of every human being to access, drugs that are impossible to find in my community.
This article was originally published in the winter 2012/2013 Our Bodies Ourselves newsletter. View the full newsletter.
I am a lecturer and researcher at University of Maiduguri, Nigeria. I am currently developing an integrated intervention for palliative care in people living with HIV in Nigeria. This is part of my PhD research. I will appreciate if I can have the contact details for the individual and organisation referred to in this article. Thank you.