Zambian Patient Activist Carol Nyirenda's Moving RESULTS International Conference Speech
Zambian activist and patient advocate Carol Nyirenda delivered the following speech at RESULTS 2011 International Conference donor luncheon:
“Thank you for having me.
“This is the second International Conference (IC) that I am attending and it is always great to be here among the RESULTS family, where I always feel at home.
In 2001, when I lost my husband, I too fell ill after his death and was bedridden for months. I had very little hope of getting well especially when I was told after a biopsy taken that I had a skin cancer called Karposis Sarcoma. Little did I know that this was just the beginning of many years of pain and helplessness. I later developed a dry cough which, after many X-ray tests and going back and forth to the health centre, was finally diagnosed as Extrapulmonary Tuberculosis. Because I was getting little response from the treatment, I was then tested for HIV and confirmed to be positive.
“During this period I was ill, I was unable to work which made it even more difficult to pay for hospital visits, let alone the treatments. Through support from my family members, I completed my TB treatment but could not afford to continue buying my antiretrovirals (ARVs) and had to stop the HIV treatment. As we are all aware, during those early years, I had been given a death sentence. Imagine, being co-infected, faced with the dual burden of being sick and still being expected to provide and care for my family. There was nothing that I or my family could do. With two young children to look after and retired parents, there was nothing left to do but to stay in bed until my time to die came.
“But guess where the help came from to give me a second chance to life? Not from those close to me in my country but from all of you around this room and others like you around the world – people who are dedicated to help and save lives of people like me from poor countries where, unfortunately, the burden of most communicable diseases is highest. Through the dedication and the kind of work that folks like you do, through support of the US government through PEPFAR and the Global Fund, life saving ARVs were introduced into my country just in time. I was one of the lucky people who got enrolled onto the free ART roll out in 2003. I had been bedridden for several months and written off for dead.
“Look at me now! My life has been saved; I now lead a full normal, positive, and productive life. I am now able to work, support myself and my family, and at the same time contribute to the economy of my country. At the same time, my children where saved from becoming orphans. I am now also able to help educate others on issues that concern affected communities.
Most of all, I am glad to be able to personally come to a country where people worked hard to save my life to talk to you to ask you to continue your good work in order to save and improve lives of more people who are back at a place where I was a few years ago.
“Before I go any further, I would like to say a big thank you for giving me a second chance to life, for giving me and many others a chance to plan long term, a chance to see our children grow and graduate and most of all a chance to lead a normal, healthy, productive life without the heavy weight of death over our shoulders.
“As far away as you are, you interceded where my family, friends, government could not and helped improve my life and that of millions around the world. I am still here today because of people like you. My children were able to complete their primary education again because of you. Why? Because during the time I was bedridden, my children could still go to school because you all made it free.
Really, thank you to you all.
“Other than saving and improving the quality of affected communities out there, organizations like RESULTS have come in to partner and build our capacity as former TB patients and activists to empower us to be able to advocate within our countries for equal access to treatment, care, support, and respect for our rights. For example, I received media training from RESULTS which now enables me to stand before you all and speak without shaking and sweating; they got rid of the stage fright and the butterflies in my stomach. Best of all they have great support systems after the trainings unlike other groups who will come in and train you and leave. They have a great mentorship program which carries on into other work and speaking engagements one may have which are not related to RESULTS work. This helped increase my advocacy skills and enables me lobby policymakers at both national and international levels with confidence.
“Back in Zambia, I work for a patient-led NGO set up by former TB patients and those living with HIV. We received our initial funding to set up from the Global Fund, a fund to which the U.S. citizens contribute in a big way. As affected communities, we have also been given a chance to take a leadership role in the running of these funds by being given a chance to have a seat at the policy-making table. We were given a board seat with full voting rights within the Global Fund. At the country level, we are also given a chance as CSO to receive GF money as Principal recipients and then identify grassroots organizations who then receive the funds as sub recipients and fully implements programs on the ground in their communities. That way, we as the recipients of care can ensure that, the money that you all work hard to ensure in put into the Global Fund is used as intended and make sure that it actually benefits the recipients of care, in the end improve and save lives of many – including mothers and children.
“RESULTS has been working with a lot of civil society organizations around the world, building capacity and giving a voice to the voiceless. There is now this reduced funding – we should avoid pitting one disease against another, because usually several diseases will attack one body and that one body needs to access attention from one health institution.
“So much has been done and covered over the years and reducing funding will only take away the good that has already been made. For example, lets look at the issue of TB/HIV co-infection – you cannot begin to imagine how painful it is to adhere religiously to your ART medication and have your life taken away within a short time of having TB. We are now struggling with emerging drug resistant strains of TB which are more expensive to treat. So it is important to continue carrying out programs that educate affected communities especially on issues of adherence.
“Please keep up the good work, the life of many of us though improve and saved still depends on your good work. As our countries struggle to improve our economies, we still need support for our health and education for our children. Also programs like the ones carried out by RESULTS help advocates like me in countries of the south to advocate to our government to encourage them to increase domestic funding towards health.
Again, I would like to thank you for giving me a second chance to life. I am now able to provide fully for my family. My son who was in primary school when I was bedridden is now working and my daughter is now in University. All the thanks go to you all.”