you missed this a week or two ago. Hot damn my fella can write! In the paper, it ran with photos by award-winning photo journalist Smiley Pool.
(many thanks to Ian Fennell, managing editor at the Idaho State Journal for the opportunity)The Baylor Children’s Center waiting room fills to capacity by 8 AM. Its vaulted ceiling and tasteful artwork do little to camouflage the overcrowding. So many of the children are stricken with diarrhea and vomiting that the room’s central feature is a large red plastic bucket continually refilled with oral rehydration solution. In fact it is not so much a waiting room as a bus terminal that happens to be the entry point to Malawi’s premier center of pediatric HIV care. First time visitors invariably stagger when they realize that almost every person on the benches is infected with HIV. And those who are not infected are the aunts and uncles, grandmothers and grandfathers now caring for a generation of orphaned children.
In a country where almost 15% of the population is positive and the average life expectancy has dropped to below 35 years, HIV has bullied Malawi into submission. Now a decade deep into the crisis, the nation is starting to fight back.
The two newest and nicest buildings in Malawi’s capital city, Lilongwe, are both dedicated to HIV. The National AIDS Commission occupies a brightly mirrored glass structure surrounded by manicured lawns. The other, the Baylor Children’s Center, sits kitty corner to Kamuzu Central Hospital, Lilongwe’s main referral center. The two’s juxtaposition illustrates where Malawi has been and where it could be going.
You could claim Kamuzu, a place where you are reminded that smell is the most powerful of senses and also the hardest to forget, sits at the front lines of Malawi’s HIV crisis. Fully 70% of the adult patients and almost one-third of all infants have HIV. But for too many patients Kamuzu is actually the end.
Two years old, Baylor retains the freshness of energy and big money. Exam rooms are indistinguishable from any pediatrician’s office in developed countries. The young, imported physicians Baylor employs decorate them with toys from their last trip home.
Shira is typical of many of Baylor’s patients. Until this year, she had never been sick, but by the time she arrived, she had been seen seven different times at the local health center for fever. Her decline was now accelerating despite a range of treatments.
Shira’s mother knew her own status, positive, and also her father’s who had died the year before. But denial is a basic instinct that is only strengthened in the face of repeated tragedy. Enabled by health care workers who had pushed--but not too hard--for the child to be tested, Shira’s mother had ignored the obvious. HIV comes to a boil slowly over years. Its gradual consequences are often missed or disregarded until it overwhelms the body’s immune system.
Like most parents, Shira’s mother stoically received the test result she already knew. Her eyes quickly darted to the ground. Complete silence followed. Outsiders explain this as cultural. I wonder if it is a protective response: quick acceptance of what must seem an inevitable part of life.
Shira will wait several more weeks to start her HIV treatment. Before her mother is allowed to give the medicines to her daughter, she will be required to attend classes, meet with counselors and physicians multiple times, and demonstrate an understanding of the treatment her daughter will take for the rest of her life.
At first, I thought it cruel to make patients like Shira wait for life sustaining medicines. The medicines, known as highly active antiretroviral therapy or HAART, will transform her HIV into a chronic but manageable illness. It is an understatement to claim HAART is life altering.
But taking HAART is also complex; even more complex are the politics surrounding it. So much so, Malawi has only been offering HAART to children for three years. Three years ago, Shira would have died within months.
*****
When I started medical school in 1998, America was crippled by the AIDS epidemic. Parents were still boycotting schools if one of its students were infected with the virus. Medical professors filled their lectures with HIV, and AIDS patients packed the hospitals of major cities. We learned more about AIDS than any other disease.
Today medical students learn about HIV from a decidedly different perspective, and absent the urgency of crisis. Ignoring that we have yet to develop a vaccine which prevents transmission of HIV, treatment of the virus stands as a triumph of modern medicine. HAART can make HIV undetectable in the body, and patients can lead essentially normal lives. Infected American mothers have less than a 2% chance of transmitting the virus to their babies. This is the HIV of America. Sub-Saharan Africa tells a different story.
Drug companies and policy makers resisted sending HAART to countries like Malawi during the late 1990’s and early into this decade. Various excuses were offered, but most revolved around the thought that African patients could not be trusted to reliably take their medicines. Since even a few missed doses a month makes the virus resistant to medicines and much harder, if not impossible, to treat, executives convinced themselves that withholding treatment from a continent was paternalistic benevolence. In retrospect, most everyone recognizes such rationalizations as greed cloaked in the patronizing remnants of colonialism.
I recently met an orphaned 14-year-old who had been on HAART through the Baylor Children’s Center for two years. Now living with her uncle, Limbandi had just finished Malawi’s equivalent of junior high and was waiting on her final exam scores, which would determine the high school she attended. Industrious and resourceful in ways only survivors are, her future plans included studying to be an engineer at a foreign university.
Like most adolescents who were infected at birth, Limbandi wears her HIV status conspicuously. She is stunted, maybe the size of an American ten year old, and her face is covered with flat warts. Scars from a prolonged case of shingles cross the right side of her face and extend into her eye. But these are past problems. Instead of focusing on her illness, Limbandi is now able to concentrate on the universal theme of adolescence—fashion. She came to her appointment wearing a perfectly fitted leather jacket and brownish wig, both of which are currently the rage in Lilongwe.
What so many thought would be too complex for the average African patient to understand, Limbandi finds absolutely simple. She knows that by taking a single pill twice a day and never missing a dose she is no longer sick.
*****
Yet HIV treatment in Malawi is complex. Not because the patients are too uneducated or simple to understand, but because HIV is not simply another epidemic.
HIV amplifies all of the other diseases of poverty. Combating malnutrition, which in the past consisted largely of providing food, now is also a fight to rebuild the body’s immune system. Tuberculosis rates skyrocket as HIV spreads. At a minimum, one-third of those with HIV also have TB in sub-Saharan Africa, and recent reports put that number much higher.
Hospitals, already overcrowded, are now flooded with patients. At one regional hospital, a single pediatrician oversees the care of 200 patients per day. She describes stumbling over children who sleep on the floor during malaria season when the children’s ward census often doubles. HIV is not the only culprit but it is clearly the major contributing factor.
HIV also accelerates poverty among the already impoverished by disproportionately attacking young adults. In fact, 1 in 4 working adults in Malawi are infected with HIV. As the workforce dwindles so does Malawi’s tax base. In a country that already struggles to feed itself annually, HIV treatment must compete with every other crisis for attention and resources.
The issues surrounding breastfeeding in positive mothers illuminates both the effect poverty has on HIV and the effect HIV has on poverty. HIV is transmitted through breast milk, and breastfeeding essentially doubles the risk of an infant acquiring HIV. Because of this, in developed countries, positive mothers are counseled not to breastfeed. However, in developing countries, formula fed babies are actually more likely to die. Sadly, the best way to prevent transmission of HIV actually increases an infant’s chances of dying from other diseases.
Breastfeeding is but one of the many compromises made in combating HIV under the stresses of poverty. If only treating HIV in Malawi were as simple for the nation as it is for its individual citizens. Limbandi takes one pill twice a day and her life is now transformed. Every morning, the waiting room fills with similar patients seeking such hope. They know that treatment is available and wonder why it has yet to reach them. If we don’t offer it to them now, we will lose an entire generation waiting for an answer.
