How did you become a patient advocate?
Itís been a long journey. In 2000, I learnt that I was HIV positive and it took me almost two years to find the right place for treatment and care. During this time I went to a lot of the wrong places, such as to doctors claiming to have a cure and I lost my late wife. In May 2002, I had the opportunity to attend an HIV/AIDS facility for the first time. I learnt of antiretroviral (ARV) medication and that I could live a healthy life. At that time, the media was focussed on prevention of HIV, with messages such as ďDonít let AIDS aid your deathĒ with skull and cross bones images and no messages of hope.
The first thing that you thought when you learnt that you had HIV was death. When I got counselling, I would meet others in the clinic but stigma meant that we did not interact. Then when I sat down at the clinic with fifteen people living with HIV to discuss our condition and experiences openly, this marked a dramatic turn-around in my life. At a Christian health coalition meeting, I saw a man stand up and disclose his HIV positive status in front of everyone there. I shared my own experience and everyone thanked me for doing this and hugged me. From this point on I never looked back. At another event I spoke to over four hundred people on the development of the strategic plan for HIV in Oyo state, from this point I realized the need to organize ourselves and that as a person with HIV we had more to offer than just receiving services. I spoke to my colleagues about the need to establish an organization that will respond more positively to HIV in our communities, so we came up with PLAN, the Positive Life Association of Nigeria and launched the organization in June 2002.
How did you become involved in IAPO?
I learnt about IAPO through the Network of People Living with HIV/AIDS in Nigeria (NEPHWAN). I went to the website and thought: wow, this is an organization that our organization should belong to. I identified strongly with the issue of patient-centred healthcare. My experience with IAPO is that there are some cross-cutting issues which affect all patients. At IAPO I feel comfortable because I know I am not the only one with these challenges.
What has your involvement in IAPO brought you?
One thing I value most is the ability to share and compare notes with other patientsí organizations. My world view is expanded by being involved with IAPO and being engaged across diseases. The integration of HIV and TB has been particularly significant in realising the need for patientsí organizations to work together. We want to enable people to be the best they can be irrespective of their health condition. For me, I get a lot more from IAPO than I put in. I also realise that a lot of community organizations when they join alliances can look for financial gains, however, what is important is building your capacity, sharing best practices and improving your impact towards your own mission.
Over the years what has been your biggest challenge as a patient advocate?
My biggest challenge has been the patients themselves, because a lot of patients donít realise what their rights are and even at times when you want to assist, the patients resist. One of the reasons is that in Africa many people are not assured of some basics in life; health, water, education, and even when you get these things itís the exception rather than the rule. Many people are overly dependent on others and this affects self-esteem; people ask themselves ďwho am I, does having HIV/AIDS mean that I am less of a person in the community?Ē I want to provide treatment, information and capacity building. The focus of HIV/AIDS support has been to help people with money, rather than giving them the support to help themselves. One challenge I have is people being able to raise their head up and speak out, knowing what they need. Many people see the word of Europeans or their partners from the global North as law, rather than outlining what the real community problems and needs are.
What have been the highlights of your career?
There are two highlights. Firstly, one of our members was HIV positive and his dream was to be a journalist. He was accepted to a prestigious institution in Nigeria to study; however, when he told the school that he would have to leave once a month for his ARV treatment, the school withdrew him from the course. PLAN spent a year working with other advocates to challenge this decision and successfully got him back into the institution. Today he is a professional journalist and has helped to break the stigma of speaking openly about HIV and AIDS. The other highlight concerns a baby that had a tourniquet left on his arm overnight in hospital, which made the arm turn gangrenous and it had to be amputated. I accessed my ARVs at the same hospital as the babyís parents and when I heard of this incident, I worked with them to get them counselling and support for themselves and the child. These two people, the journalist and babyís mother, who PLAN supported, have received a Red Ribbon Award for breakers of silence on HIV. PLAN have also received a Red Ribbon Award for their support.
What do you see as the biggest challenge and greatest opportunity in building an alliance of patientsí organizations?
It can be challenging when, at times, patientsí organizations feel that an umbrella organization should provide financial support. Accessing resources in terms of information is a great opportunity.
What has been your experience in managing the emotional pull of so many aspects of patient representation with the bigger picture of improving healthcare systems?
My work can be frustrating. When I hear that a child has died because they didnít have access to information on HIV, that makes me mad, unreasonable and impatient. But if you donít have this emotion then you wonít get anything from anyone; I channel this emotion into demonstrating what is needed to make real change. The world is not static, so there is no reason why we shouldnít move.
Are you involved in national or state healthcare decision-making?
Yes, at some level with the national HIV response. Until three months ago I sat on the technical working group on decentralization of ARV therapy. I found my membership of this group very interesting. Some Professors were reluctant to change their approach when I would explain that such approaches wouldnít work; I would say ďIím a community person and a patient, I know that it wonít work. You are a professional and an expert but you canít walk in my shoes.Ē Iíve had to question people based on reports I get from the field and the response would be ďno you donít understandĒ and I would say, ďMake me understand, how you can measure the effectiveness of your intervention without involving patients? Not the number of people placed on treatment but the number of people whose lives have been improved?Ē I explained to the group that we need to involve patients as individual persons and not as data or figures.
What keeps you busiest as a patient advocate?
Wow, let me see. I spend most of my time trying to break new grounds. Iím a very impatient person, Iím restless, I always want to try new things and in most situations what drives me is making life better for other people. Iím also always bothered by lack of access, itís a big issue for me and vulnerability. There is systemic and institutional discrimination. The way the health system is structured in Nigeria makes access difficult; there is difficulty in accessing primary healthcare services and many donít have access to life saving services, simply because they cannot afford it. This is what keeps me busy, trying to make positive change wherever I can. I consider myself lucky. I discovered my HIV status 13 years ago and Iíve moved myself beyond expecting death to helping others. Whatís paramount in my mind is how I can provide others with the opportunity not just to stay alive, but to live.
If you could give one word of advice to other IAPO members what would it be?
There is strength in working together and sharing experiences, thatís the basic need for the alliance. Thatís what patients should remember, whether youíre from the global south or the global north, whether youíre from Africa or Europe, a patient is a patient.
Could you share a question for our LinkedIn discussion group?
How do we increase the visibility and prominence of the patient? The consumer is not as powerful as they should be in the healthcare sector. How do we transcend from a helpless recipient to a powerful consumer as the person that pays the piper?
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