She was 40. Her oldest child was 20, her youngest 7. Her second child, like thousands of other children across Malawi, is waiting the results of standardized testing at the end of “Form 2”, his sophomore year in high school. These results will determine whether he enters Form 3 or repeats the first two years.
Her husband died about four years ago, and she tested positive for HIV. She steadfastly refused everyone’s efforts to get her to take anti-retroviral medication. When she came down with active tuberculosis she also refused treatment falsely stating that she had several small children at home whom she could not leave for the intense initiation of treatment at the District Hospital. Instead, she returned home to the little house she occupied with all her children. Finally they convinced her to go to the hospital and begin treatment, where she died shortly after admission.
There really is no reason for anyone to die early of HIV. A recent study, admittedly in the west, found that people who started treatment for HIV early in the course of the disease and who were younger (I believe that was not yet 60) at the time of initiation of treatment were as likely to live to an old age as their peers who were not infected with HIV. While the medication that has been available in Malawi until recently (the protocols are undergoing revision) are not the regimens that are currently recommended for initiation of therapy in the U.S., they served my patients extremely well in the opening days of multi-drug treatment, leading to prolonged suppression of the virus for those who took them as if their lives depended on it. As it turned out, their lives did depend on taking them exactly as indicated, always. Some people had been on the medications for 10 years or more with no evidence of the virus in their blood since starting them.
Medications are not as readily available for many Malawians as they need to be. Some people have to walk many miles to get to a center that offers the life-saving drugs. That may have been part of the problem for this woman. Yet, that does not seem to have been the case. She was in contact with people who could treat her, and her family could have cared for her children intermittently. Her brother, a friend of mine and the source of this information, is a medical professional who tried to persuade her. Why did she not submit to treatment?
The reasons for this sister’s actions will probably never be known. She may not have held any hope for the medications. She may have heard how “horrible” they were, and difficult to take, full of side-effects, and thus refused, not wanting to add insult to injury. Often, however, stigma is the problem. People are afraid to take the medications because then people will know that they are HIV positive. “And we know good people shouldn’t be HIV positive.” Sometimes, however, the stigma is so deep that people stigmatize themselves. The worst kind of racism is that in which people hate themselves or others of their own kind because they belong to the group. This is also probably the worst kind of stigma around HIV. “Because I am HIV-positive I am a no-good, worthless person. I deserve to die.”
I have had a few other patients who had such an attitude. One never took medications for HIV and she died of her disease eventually, after being pulled “out of the fire” on several occasions for opportunistic infections. She was a deeply religious woman, Roman Catholic, and she made statements to the effect that she deserved to suffer, that her suffering might somehow save her. For another similar case, see my blog at this site, “Shame, HIV, and the Body of Christ”, February, 2010. I wonder if something like this was not working in the sister who died today.
At any rate, I am deeply saddened and very angry on the occasion of this needless death. Needless! All of us must die, but this woman need not have died leaving a seven year old and a son anxious over his grades, and others. She need not have died leaving her children with neither parent. The death of her husband should have been a wake-up call that saved her. But she refused to look to the help that was there. Why do we continue to accept death from the evil one when we could take life from the Father of us all? Pray that as we increase in linguistic skills and embark on this ministry we will be able to join the Lord in offering life, to compellingly offer the resources of the Kingdom of God for life, convincing the wounded and afflicted to reject the Evil One’s seductively compelling offers of death.