THREE weeks ago (Reflecting on AIDS August 19, Why would Anyone Stop Taking ARVs) we reflected on why anyone taking ARVs would want to stop taking them, knowing full well what the benefits of HIV treatment are. A couple of days after publication, I received a moving response from Dorcas N Chewe of Ndola. The response was a deeply personal testimony, so deep and so personal that when I wrote back seeking her permission to share the testimony, I fully expected her to decline or at least seek to remain anonymous.
Here's what she said to my request to share her testimony:
"Firstly, thank you very much for reading my story. Doctor I am at liberty to tell anybody my story at any given time. To me it's like I have lived with this huge challenge of handling my HIV+ status and that of my children. Imagine doc, most individuals cannot handle such challenges as a person; in my case I have sort of managed, but still with the guilty conscience as I mentioned. I have been strong not for myself but for my boys, and people and family have appreciated the way I have handled this issue.
"Doctor you are welcome sharing my story in your column or interacting with me at any time. I have nothing to fear because, as a family we have been on ZNBC TV Kitwe. Muvi have done a documentary yet to find sponsors to make it be viewed. We are a living example in our community.
"As a mother, I feel there are many of our children born that time around, who get sick and just die suddenly due to viral load of the same virus. As you are aware, there are slow and faster progressors."
In response to the article of August 19, Dorcas N Chewe told the story of her journey in life as related to the question "Why would anyone STOP taking ARVs?" Hers is a story of not just individual but family unity, courage and leadership in responding to HIV infections.
Here is how she tells it:
"By the way doctor, why would anyone stop taking ARVs? Doctor, some serious research needs to be done to find out why some decide to stop ART. I personally do not understand why somebody would opt to stop taking ARVs when in the first place she/he was counseled by experts, and the benefits were explained.
I believe there could be some serious concerns that make these individuals abandon treatment, instead of choosing life they choose death. We all know that at some point we shall die. But when there is an option to live longer, of course we must use our common sense and choose to live. It's like one decides to remove a life-supporting instrument and start gasping for life. That is suicidal, and I think we can do better to appreciate life and other stakeholder's efforts to make us live longer than to act otherwise.
Imagine, like one doctor wrote; it's sad indeed to see people still die of HIV and AIDS in our hospitals in this day and era, when a lot of information and resources have been put into the fight of the scourge. Is it that stigma is still rampant or it's just some attitudes with some of us? Are people angry that they do not deserve to be on ART as they are just victims of circumstances, like in case of mother-to-child transmission or maybe a husband to wife in most cases? Or is it that, they too quickly get defeated psychologically to social and economic challenges whereby they may not afford good foods to sustain their daily intake of medication?
Doctor, I am a mother of two boys who are HIV+, (the) older turned 23 last week , the other is 19 years. Of course doctor you know I infected them at birth because at the time, the PMTCT was not effective. However, my children had a tough time growing up due to all kinds of ailments, especially the older one.
But as a mother, barely a day passes without (me) feeling guilty of the complications I have caused to them. I wish we had PMTCT then. I have told them why they started taking ARVs and we like have settled scores. I always treat them like any other child without HIV, no special treatment at all. I have told them to accept life and have encouraged them to focus on education so that in future, they don't become other people's burdens and later on be stigmatised and get trampled upon.
We adhere to treatment as a family and have more than enough information about the disease. The older one is an activist in our community and he heads a support group at Masala clinic and he is a member of NZP+. At least, his stance has made a lot of teenagers and youths shed off some fears about HIV and AIDS as he speaks to them in meetings and as individuals.
Of course we pray to our GOD all the time for His favours to let us live up to this time, but we shall never be cheated by some bogus church leaders who are telling people to stop taking ARVs. Just this year I read from the same Post newspaper how a father complained that his two children were prayed for by a pastor and (the pastor) told them that this HIV and AIDS is a demon which they inherited from their parents. So the teenagers were told that they were cured. They stopped medication and their father had a tough time to convince them as he saw the health of one of them deteriorating.
It's like there is a tug of war between pastors and medical practitioners. "Ukwimba akati, kusansha na Lesa". (Roughly translated: "To dig a medicinal root goes with God" - meaning that taking medication has to be with trust in God).
This story of the family of Dorcas Chewe is one that should be told over and over again, as an example of how a family should deal with HIV related issues of disclosure, adherence to ART with the help of supporting buddies (in this case close family members), and how to deal with stigma and discrimination by throwing it right back at society. I am not privy to how the Chewes decided that they would come together out as a family unit and go public with their collective HIV positive status but I can imagine that it was not an easy decision to come to. Words were whispered, fingers were pointed and names were called. But the Chewes decided that it was not going to be their problem but that of those who would choose to be bothered by the fact that they chose to come out. In family unity they stood and I am sure that their detractors at the beginning are now quiet and in admiration.
It is also a story of their courage. There are not very many young people with mother-to-child transmitted HIV out there leading support groups and giving courage and hope to other young people infected through the same route. We need more such young people who can embrace and support their peers - especially in adherence to treatment.
The Chewe family story is also a story of leadership. It should inspire many other families that have several members undergoing antiretroviral therapy. The importance of family members' support and encouragement for the success of ART cannot be over-emphasised. Similarly, the difficulties or even failure of treatment where such support does not exist are well known and documented. We can only hope that more families that are on treatment together coming out and telling their own stories. This will help us lift the veils of secrecy, blame, stigma, discrimination and denial that surround HIV infection and taking of ARVs.
But most importantly and more related to the subject of people stopping ART on wrong advice, preaching, prayer and or otherwise, the story of the Chewe family gives better stronger testimony of the importance of adherence to treatment that a retired medical doctor's advice in a weekly newspaper column ever could. Their testimony and their lives are living examples.
I have asked time and again for anyone alive after stopping ART (after prayers, cleansing, or to take up 'traditional'/herbal alternative antiretroviral medicines) to come up with such living and scientifically proven testimony as well.
As far as the scientific and medical world knows, to date there is no cure for HIV infection. The best available (and proven) therapy is in the available medically prescribed and monitored ARVs. They do not kill the virus but they suppress its multiplication enough to stop it destroying the body's immune system. That process keeps many people alive all over the world.
Thank you Dorcas Chewe, for sharing the story of your family's journey on ART.
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