Malawi Notes, via LA & the Midwest
Modern American medicine is bewilderingly complex. In the resident’s room at UCLA medical center a former visitor to Malawi and his interns ran through a litany of cases: a second renal transplant in a young diabetic woman; an HIV-infected man who had been in the hospital for months with recurrent bouts of bacteria in his blood; a mysterious case of liver failure.
The team lobbed data and statistics and findings back and forth, flipping through images on a monitor, calling up EKGs, answering pages from sub-specialty teams. The diabetic patient would undergo a biopsy of her second transplant. The HIV-infected man was headed to surgery for a dental abscess.
A missionary colleague once warned me, “The longer you stay away from American medicine, the more irrelevant you become back home.”
That day I also received a message from a Malawian friend, Dr. Dan Namarika. A former patient (call her Sandra), a young mother with HIV, had become very ill, even though she is assiduous about taking her medicines and the virus is perfectly controlled. In Europe she had received a special treatment for an uncommon condition called Multicentric Castleman’s Disease, similar to lymphoma. She did well, but patients with Castleman’s usually also develop Kaposi’s sarcoma (KS), a skin cancer which can spread.
Sandra developed swelling in her leg while still in Europe and was told, inexplicably, that she had varicose veins. Upon arriving in Malawi it was clear that what she had was KS. We treated the condition with chemotherapy. The leg improved. She wanted to start work, which made continuing chemotherapy difficult. (The risk of KS recurring is high.) So I suggested an oral medication, which was unavailable in Malawi, even for a more affluent patient like Sandra.
Now she had returned with what is probably spread of the Kaposi’s sarcoma — or, Dr. Namarika asked, was it Castlemann’s disease again? And perhaps there was another infection Partners in Hope could not detect.
For Sandra, there will be no biopsy or sophisticated tests. No blood cultures. No special medicine like what she received in Europe. No sub-specialists to the bedside.
She has Dr. Namarika, and he is one of the most formidable medical assets I can imagine, but even Dan can only do so much without more resources. I recommended that Partners in Hope try another round of chemotherapy, since it had worked before.
I left Los Angeles for a conference in Kentucky. A former missionary to West Africa, now on faculty at Mayo, asked the audience: Can we have these islands of excellence (mission hospitals) floating alone amidst a sea of agony? He meant to challenge our community, as others have done, to integrate more fully into national systems and a public health approach to African health care.
The question itself is a tough one, and beyond the scope of this space. What struck me was the imagery: a sea of agony. In my experience, that limitless and frigid ocean, despite mighty efforts by a dedicated few, not only laps up onto the shores of these tiny islands of occasional excellence but often floods them, overwhelms them, drowns them.
All is not lost. In early 2005 I sat in a church in Thigio, Kenya. A support group of more than 50 HIV-infected patients had gathered. We had promised this community that the hospital would bring HIV care to them. It is good to make promises, because then you must keep them.
The assembly could not wait long: thin, wasting away, coughing polyphonically in almost choral fashion. Then their voices rose in a traditional Kikuyu hymn, saying (paraphrasing) “The one I let into my house is the one who betrayed me.” The place vibrated with suffering. These people are going to die, I thought.
The vast majority of them did not. They live to this day, receiving care through a small clinic hosted by a diminutive, indefatigable Irish nun. Kijabe still staffs the HIV center. It’s slow and kind of boring. No one is ill. Patients collect their medicines and go on their way. I stopped by a former patient’s duka (shop) and found her robust and thriving. She sold me flour.
The sisters have dramatically expanded their activities. A school for disabled children sits nearby, adjacent to a day care program for older adults. I walk into a library, utterly still and quiet. Fifty faces look up from their books in unison. Local students have nowhere else to study.
My colleagues tell me there has not been an HIV transmission from mother to child in this region for years. An HIV-free generation? Maybe.
The sea of agony can be beaten back, for a moment, a brief and eternal moment. What can rise up in foaming swell to drown the appalling anguish is goodness and mercy. Seamus Heaney wrote of such foolish aspiration in The Cure at Troy: Human beings suffer, They torture one another, They get hurt and get hard. No poem or play or song Can fully right a wrong Inflicted and endured. History says, don’t hope On this side of the grave. But then, once in a lifetime The longed-for tidal wave Of justice can rise up, And hope and history rhyme. So hope for a great sea-change On the far side of revenge. Believe that further shore Is reachable from here. Believe in miracle And cures and healing wells.
We must have those miracles. They keep us afloat upon the sea.