my name is constance mudenda. i supervise three clinics: kanyamaclinic, materamaine, and railway clinic. our main focus in the clinic is hiv. for us, we take hiv as something that we talkabout freely because we want people to talk about their experiences to help the next person. i've watched her work in the townships.i don't know if you have. because she is like a magician. she has a way of communicating tothe level of people in the townships. if we had ten connies in this country, we wouldgo a very long way to encouraging people to stay
on medication, also to encouragingpeople to test. but, you know, they are very rare. with hiv, i have gone through a lot. in my life, i've had three children,and i've lost all three children to hiv. i lost my second-born in 1992, and i lostmy first-born and third-born in 1996. in the same year, i lost two children. people started talking and said,'oh, her children are now dead, 'and look at the way theysuffered before they died.' 'so she's the next one togo, she's also going to die.'
i started thinking about it myself. but i didn't have the courage to go for a test. because in '96, we didn't even have arvs. i didn't even know arvs existed. all i knew is that i'd go for a test,and sit back and wait for death. i think by early to mid-nineties everyblack zambian had had a family member or at least a close friend or maybe somebodyat work that had had this illness and, in those days, had died because,uh, people died. and everything that i had in my training asa doctor, in my experience, was not enough.
there was nothing i coulddo to keep people alive. and then i was one of the pioneers inantiretroviral therapy, and the hope began to rise, and then it was soexpensive, and we watched people die, because they couldn't afford the medication. can you imagine how desperate that is,for the provider of the medication? the reason why i went for the testwas because my husband fell sick, and he had given a condition, he said, "i amnot doing that test unless you do it with me," so that is how come i went with him. not that i really wanted to go for an hiv test.
but because i was trying to save his life. both of us were found to be positive. within the week, he was put on treatment. that is when the tricky part came in. there was a lot of debate:what was more important? should we pay the rent, or buythe drugs, or should we buy food? and when you look at all thesethree, they are all important, and it was very difficult to make a decision. and then one day as i was walkingin a market called soweto market,
i found people were rushingtowards a white woman. and then the white woman was actually usedto call people because of her skin color so she started calling them "bulani, bulani,bulani," when she actually meant "come, come, come," so people gathered around her and wantedto know, uh, hear what she was talking about. she started talking and saying that inkanyama, a new clinic was opening on monday, where they were offeringpeople to access free arvs. i was the first client tobe enrolled in that program. in 2002 we had about 50,000people across the continent of africa that were able to afford arvs.
but right now we have three million peoplethat are accessing treatment across africa, and that is a very huge step, because thatis 3 million people that are alive today who would have died becausethey couldn't afford arvs. i know the experience thati have passed through. and it's one terrible experience that iwould not wish to happen to another person. so i think that also gives me the strengthto encourage other people to make sure, especially children, that theyhave them enrolled into treatment, so they don't pass throughwhat i passed through. so, these are arvs and this is....
this one should be just taken at twentyhours only, a half tablet at twenty hours. okay? bwalya is eleven years old,but her weight is only 24 pounds which is very, very small for her age. she looks like five, six, maybe sevenyears old, but she is eleven years old. when the government was talking about afree arv program, i was one of the skeptics. it was difficult enough for us inprivate practice, a small clinic, to run the tests, to monitor people. and uh, to have people have constantcontact with a medical person and to do that on a huge scale, i thought,at the time, was impossible.
now we have something like a quarterof a million people on medication. this is the registry roomwhere we keep all our files. i think i was among the first few peoplethat came to be enrolled in the clinic. and my file was right in the first drawer there. so, this is my file. as you can see. and it's growing thicker and thickerevery day that you come here. so, when a new patient is comingin, they come with a yellow slip. all of the peer educators atthe clinics are hiv positive.
to be able to tell the people why theyshould be adhering to their drugs. and what would happen to them ifthey stopped taking their drugs. i'm going to put the names of your drugs. adherence to medication is veryimportant, especially to arvs. because as you know these are drugsthat are supposed to be taken for life. they only work for a few hours in the body. meaning that if the drugs ran outin the body, the virus wakes up. what time do you take your drugs? at 7:00 and at 19:00.
how do you know that it'stime to take your drugs? i've got to look at my watch. i've got a wall watch in my kitchen. but supposing that you're not at home, how doyou know that it's time to take your drugs? what time is it now? can you tell me?around eleven, past eleven. around, past, so meaning that you are not sure. so, we have to be very carefulwhere time is concerned. if i look at my life without the free arvs,i don't think i would've survived 2005.
i would have died. so, i'm alive today because of thetreatment that has come on board. as you have seen yourselves, having come here acouple of times, people that started medication in may are looking very different now. they are looking very well. there's a big difference. yeah, this is real me. wow, they've done a greatjob, i can't believe this. when i saw that picture todayi almost shed tears.
the way i was feeling in may,it was like i was already dead. and i never had any hope thatagain i would come back to life. there was nothing that i could do for myself. i could not feed myself properly, i wasn'table to do anything for my daughter. and after i started my medication, it waslike i was being resurrected from the, from the bed that i was sleeping in. when i was sick, i used to hide from my friends. if they knew that i was hiv positive, thenthey were going to keep their distance from me. that's something that used to scare me.
so i thought maybe keepingit to myself was okay. when i first met concillia, she was a bitwithdrawn, she needed someone to talk to. and then i think that was the missinglink in her life, and i encouraged her and invited her to visit our support groups. even after i started taking mymedicine i never really had that courage to face other people about being hiv positive. the first time i went inkanyama, i couldn't believe that all people would be openjust to talk about hiv freely. all the peer educators are also hiv positive.
and i think that that reallyencouraged me so much. when i met her again after we had visited thesupport groups with her, and then she had talked to some people, you'd see theconfidence coming back in her. she's got the strength, a force behind her. by this time, i'm almost doing everything. i can go for a walk withoutgetting dizzy, or anything. and i'm about to go to the market to buy somefood stuff for my daughter and for myself. and today, i want to buyclothes for my daughter. i just want to get something for her.
my sister bridget, she'smy immediate older sister. she was always there to encourage me. she never gave me the distancebecause i was sick. when she broke the news to me that shewas getting married, i was very excited. the only thing that maybe made us cry wasone day when we were in our bedroom talking about her getting married, was like,"we're not going to be together." if i didn't have any access to medication, ithink by this time i was not going to be living. and i think how i'm ready to take mymedication for the rest of my life. for the sake of my daughter,i want to see my daughter growing,
i want to see my daughter maybe,maybe also getting married, so i could be celebrating as her mother. yeah. we need to try and dispel the stigma, we need to bring people togetherso that we can break the chains. we said, "okay, let's try to form a supportgroup of people that are living with hiv." now at that time, there were very fewpeople that were open about their status. very few actually. i remember the first meeting that we had,there were only five people that came.
and then these people started saying, "you said you have a support grouphere, but where are the people?" and then there were just five ofthem and i said, "you are the people. why should we wait? if... we have to start, ifit's two of us, let's start. this is the only way thatwe are going to break this." so, it wasn't easy. every time we'd call for ameeting there would be a lot of people outside the meetingthan within the meeting.
the reasons being that those outsidewanted to know who was in the meeting so that they could go and spreadthe news out there in the community. that, "oh, this person, we'veseen them in the support group." but uh, we, i think we-- weheld on, and we didn't give up. and that, i think, helped inbreaking the stigma within the clinic. how are you! you're fine! oh my god. fifteen milligrams of...
like we said, we have managedto put three million people across the continent on treatment. but those who are really in the rural set up,don't have easy access to treatment. we have people that are walking four days andthree nights to get to the nearest clinic. i don't think that is easy access. tonight we are having a candlelight servicein memory of people that died from hiv. i always come because i feel the memoriesof my children should be kept alive, but it's very hard not to beangry because i've lost so much. at that time there was no preventionof mother-to-child transmission.
there was no intervention of any sort. i'm alive today because of the arvs. and with one of my children i struggledfor years, for about seven years. so if only she had hung onjust for a few more years. that is what i always think about. if my daughter was alive thisyear she would've been nineteen. moments of her being well andplaying were very few and far apart. if she was feeling well, she liked to dance. it's not my fault, i know,but i failed when it came
to my children, i could not keep them alive. so, i try, by all means, to help other people. so that they can help theirchildren get back to health. i have a three-year old daughter. she's very strong. ever since she was born. she's never been admitted in a hospital. i had natasha when i was very sick. i knew my husband was positiveand i was also positive,
so we expected to have a positive child as well. if a woman is hiv positive and pregnant, andremains healthy, a very good immune system, very low virus, the chances of hertransmitting to the baby are actually low. but now we're bringing that even lower. because now, in zambia, pregnant women goingto an ante-natal clinic will get tested. if she's positive, she gets told. but she also gets put on the program. then she can take some medicationtowards the end of the pregnancy so that she minimizes the levels of virusso that it doesn't transmit to the baby.
my parents decided to take her for a test. the first time that i was told that shewas tested negative i never believed it. not until they did for the third time. that's when i came to believethat she was negative. and i was very excited, i was very happy. natasha has been very helpful,especially in terms of um, my medication. i remember when i was very sick there are times that she would remember thati have to take my medicine. so if she hasn't seen my taking mymedicine, she has continued to ask me,
"mommy have you taken your medicine?" "can i bring water, you drink your medicine?" i remember the first time i couldn't eat. and every time i could refuse to eat shewould just go, "mommy, if you're not going to eat, then i won't eat as well." so, looking at her, i could feellike, if she's not going to eat, then that would be really bad for her health. so i would just force myselffor the sake of her. i really put more effort on myself.
i really have that courage tosay i'm able to do everything that a healthy mother can do for her child. if the arvs had not come, i believe thiscountry would've been crippled to an extent where i don't know what would've happened. hiv is something that we talk aboutfreely now because of the arvs. and i think the impact has beenseen with the huge numbers of people who are coming to access treatment right now. because people are no longer scared to cometo the clinic because they want to live. i want to be the way i was thoseyears back, before i was hiv positive.
i want to be strong. i have to have that thing in my mind tosay, "i am positive, but i'm still living." not all hope is lost.