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Time to Treat: Transforming AIDS Treatment From Right to Reality
A Satatement Delivered by Fred Minandi in Barcelona, Spain, at a satellite meeting co-sponsored by MSF and Health Gap of the XIV International AIDS Conference
July 7, 2002
Good afternoon everybody.
My name is Fred Minandi. I am 42 years old and I am a farmer in Malawi. I have got a wife, who is also a farmer, and two children. The eldest one is married while the other one is still at school. I have the chance to be one of the patients who is benefiting from ARVs in one of the MSF projects described by Jean-Michel previously. My village is in a rural district and I have a grass-thatched house with one bedroom. I am getting money because of my garden where I grow crops for food.
Malawi is probably one of the poorest countries with the highest incidence of HIV in Africa. Fifteen percent of the adult population is infected with HIV. Where I am living, 24% of the pregnant women who are tested are HIV positive. Ten percent of the youth from the secondary school are also infected. These figures have been given to me, but what I see in my village is young people too sick to be able to cultivate their gardens and to feed their families. Families are spending a lot of money trying to find drugs, which could help the sick ones, without result. I have seen parents dying, leaving orphans to be cared for by the elderly who have no means and no hope of giving them a future.
Personally, I started to be sick in 1997 and I have been on and off during four years up to a point that it was difficult for me to do anything or work. I was tested in 2001 and I have been lucky to live where MSF had just started ARV treatment. I am one of the first patients to get ARVs for free in Malawi, and if I am here today able to speak with you it is because of this treatment.
There are some people who say that in Africa people will not be able to take drugs because they cannot tell time. I can assure you that I have no watch, but since I started taking my triple therapy in August last year, I haven't missed one dose.
Why? Because Margot, the MSF nurse, took a bit of time to explain to me how these drugs were working and that if I was not serious enough to take them very regularly, the drugs could not work any more. She explained the side effects and that it will be better after a while and it was tough. I got nauseous at first but after two months it disappeared. In tact, for me these drugs are much easier to take. Today, my life is attached to these drugs and I don't think I can forget them.
All my friends who are in the People Living With AIDS support group are feeling the same. We are 60 in this group and we meet regularly every month to be able to speak together. We explain to the ones who get treatment what to do if they have side effects and explain to them that it will stop. We help each other if one is too sick to come to collect their drugs. For some of us who have nobody to tell about our HIV and our treatment, we become guardians. lt means that we are going with him to the compliance session and helping him to take the drugs at home. We try to support the family if one of us dies but mainly we speak about how we have improved and how the treatment gave us our life back and the improvement we notice almost each and every day. We try now to have some small income-generating activities to be able to support some of us who are poor. We inform our community about all the medical services, which are available for everybody in the district: the HIV clinic, the program for the pregnant women infected, the voluntary counselling center, where to get condoms, where to get information.
I had 107 CD4 [medical indicator for the body's natural resistance capacity to infections] when I started the treatment and today I have got 356 CD4 and I am very proud. When I was sick then, I knew I had HIV, but I would never admit it or speak about it. Speaking about it would have not changed anything for me except making me depressed. My neighbours were seeing me becoming weaker and weaker every day. Of course, they all knew what I had, but nobody asked me. They just gradually started to not come see me. Most of the people are like that in Malawi: they don't speak because they don't want to know. It is why my country is dying in silence.
Today, I am back in my field, back in my church. I can feed my family. I used to harvest only about two bags of maize for the past years because I was too weak. Now I am talking of harvesting 10 bags of maize just this year alone. I feel have a future. My neighbours started coming to see me again like before.
I myself feel I have changed. I can now talk to my children, telling them that I have AIDS.
I tell my neighbors, too. When there is a meeting in the district, I go and speak about my disease because I am not ashamed any more and I know I will not be rejected because I am just like everybody else. Somebody with AIDS, who is very sick, makes everybody afraid because you see your own death in his eyes. But when you are under treatment, you feel and look better, and then people do not reject you. I would like to say to all the people here that treatment is the best tool against stigma. I used to think that there was no hope for those of us living with HIV, but treatment has changed this.
There are some other people who also said that treatment is too expensive and therefore only prevention should be done in a country like Malawi. First of all, would that mean that I would have to die with all my friends of the PLWA group as well as with the 1 million people who are already infected in Malawi? For us, talking about prevention is too late, but I believe we still have the right to be treated I would like to say that I consider my life important not only for me but for my family and my country as a whole. I feel whatever little I contribute for my family, friends, relatives, neighbors and to the Malawi nation, could be just a complement of the work of all those who are feeding Malawi.
Secondly, I think having affordable treatment available will encourage people to know about their serostatus rather than when there is nothing to be offered. It will help break the silence. My friends and I from the PLWA group have been trained as counsellors and we are convincing a lot of people to go for testing because they know that if they are already positive they will be treated. They know they will have a real benefit for themselves. They see what the treatment has done for us.
Thirdly, we are using generic medicines from India in the program in Malawi, which keeps the price as low as possible. The less expensive the drugs, the less expensive the program, and the more people can be treated.
I would like to say that prevention and treatment are linked together. I am sure that today I can convince more people to change their behavior, to use a condom, to go for testing. Why? Because I am treated myself. I can also tell them that treatment is still difficult and that they have to try hard to stay negative.
I would also like to ask those people who say we should only do prevention: if this epidemic were claiming so many lives in your community, would you really accept letting all of us already living with HIV die?
I hope I will be able to meet a lot of people who are also HIV positive and who could help me become more active. We are the ones who need these drugs and we are the ones who need to fight for it. I hope that our voice will convince the people who decide to give money for drugs to do it and not only for prevention.
In closing, I would like to appeal to all the pharmaceutical companies manufacturing ARVs to reduce the prices of their drugs for all low income countries, to our national governments to support treatment and ask for help, and to rich governments to give us the money to be able to do it.
The war against HIV/AIDS can only be won if we all come together.
Thank you for your attention. It was my first time for me to go out of Malawi and it is incredible.