It’s been a long week in the provinces of Northern Vietnam. I’m in a tiny room in the Hanoi Paradise Hotel. It is smack in the center of Old Quarter Hanoi and down the street from Hoan Kiem Lake. I'm laying back on a concrete-stiff, single bed watching Asian HBO (where all the worst made B movies have a permanent home). In the street below my window motorcycles, bicycles, rickshaws (called cyclos), backpackers, street vendors, old women in yellow flowered pajamas (during the daytime) and guys hawking cigarettes frantically, randomly, fill the streets. Today the outside world is too daunting to deal with. I'm starving, but I just can't find the energy to brave the streets and bang elbows with the Hanoi street crowd. I'm craving Bo Luc Lac (beef in oyster sauce smothered in a bed of french fries), but tonight I'll just eat Pringles, off-brand chocolate from the mini-bar and a lukewarm Hanoi Beer. Or two. It was an emotional day.
The day started at five thirty AM in a rented taxi that headed three hours south from Hanoi to the farm land of Nam Dinh (pronounced Nam Dik) province. I'm here as an Advisor. Nam Dinh is a poor Northern Vietnamese province where people make a living mostly by farming and fishing. As with the rest of Vietnam, the healthcare is provided by the national and local communist party. The medical care can be pretty basic, but the network and availability of medical care is extensive. Serious and specialized cases get kicked up to the provincial and district hospitals for a higher level of expertise and experience. Today we were asked to help with cases that are arguably the most serious and specialized: Children with HIV and AIDS.
When I was a young, ambitious medical student,in the days when Penicillin still worked, I decided there were three areas in which I had no interest in practicing: Obstetrics, Pediatrics and Infectious Diseases. I had good reasons: Birthing involved too much instantaneous stress, screaming and too many unbridled, gushing fluids. Pediatrics meant dealing with loud children with whom you cannot negotiate and infections are just plain nasty. A festering pus-filled Staph infection still makes me wretch no matter how many times I see it. Every person has their Achilles heel. The fact that twenty-five years later I would be doing two out of three felt ironic.
The Nam Dinh District Medical Center is a crumbling, square, two-storied building painted a color of yellow usually reserved for school cafeterias. We were led into one large meeting room where the room was divided in half by two rows of chairs. On one side sat the medical team: two doctors, one nurse and one social worker. On the other side, twenty women and children in a group, chatting, waiting and playing. This one large room served as the treatment room, the waiting room, the counseling room and the pharmacy. The women and children all seemed to know that they share a strange and silent bond. Most of them are HIV infected and that was why they were all here.
Vietnam is a place where stigmatization about HIV and AIDS is still strong. HIV support groups, especially groups of infected persons, is an unfortunate rarity. It is mostly in these group clinics that infected mothers and children bond over their common issues and diseases.There is no privacy in this makeshift doctor's office and no one seems to be concerned about it. This is how it is done. If the families want more privacy they must spend extra money for monthly transportation to the National Children's Hospital in Hanoi. There, with a little luck, they will not see anyone they know. In reality it will be a similar set-up with more people waiting in a larger room for a longer period of time. The children, as children will be, cannot be bothered with stigma or facts. They run and play and treat the day like a school outing. These children are all less than six years old. Treatment in Vietnam for children with HIV is a very new phenomenon. Older children who were infected previously have not survived.
These children do not yet grasp what they will have to grasp one day to survive: they will have to act different than other children. They have to give responsible adult attention to their bodies while acting like a kids. But that kind of thinking is not for today. Today is a day off of the farm and a drive into the big, provacative city. To them Nam Dinh District Hospital is the place they come once a month to play with their once-a-month friends and spend a few minutes being poked and prodded by a doctor. I'm surprised that the women accompanying the children don't seem shy. I'm told that this is because most of them are not the children's mothers. These women are the friends, aunts, grandmothers and extended families. The mothers are likely too sick or shy or guilt-stricken to come with the children. Or they are gone. Fathers almost never show up if they are still alive. Either they are working or they have died of AIDS because they were too late or too shy to be diagnosed.
Vietnam does not have a high prevalence of HIV and AIDS. In total HIV infects less than one percent of the population, but well over half of these infections have come from injecting drugs and sharing needles. If you look at a map, the most direct route of heroin transport from Asia's Golden Triangle to Southern China cuts right through North Vietnam. Vietnam is a victim of the most direct route of trade. Also homemade injectable Amphetamine with it's ease of production, mass availability and addictive nature has not skipped notice in the region. It now has a strong foothold though nearly every country in Southeast Asia.
In communist countries, much as in most Western countries, Heroin injectors are not highly regarded members of society. They are uniformly stigmatized. Most governments, however,would agree though that their care, health and support needs national attention. In Vietnam there is a specific Government Ministry assigned this daunting task. It is called The Ministry of Social Evils. The connotation is palpable. There is a prevailing sense that many countries would prefer to marginalize this group of drug addicts out of sight and out of existence. AIDS, at first, rapidly seemed to accomplish this tragedy. The awareness that drug addicts were dying of AIDS long preceded the mandate for treatment. Change occurred with the observation that women and children were the byproduct victims of this stubbornly slow call for treatment in this high risk group of addicted men. And from that unfortunate historical course of disease management stands the group of women and children in front of me today in the Nam Dinh District Hospital.
The children are just like other children except they are a little shorter, smaller and more frail. Many have unusually dark skin or sores and spots on their limbs in various states of healing (depending on when and if they've started HIV treatment). They sit and watch the doctor examine other children with faces full of fear and fascination. By the age of six they are veteran patients who no longer fight the doctor, cling to their mothers or shed a tear when its their turn to have blood taken. Some of them have arms and legs that are particularly scrawny and they have chubby, puffy torsos. This is the side effect of an HIV treatment called D4T. D4T is highly effective in killing the virus, but displaces normal fat growth in the body. It makes some children look odd and different and makes some women begin to look like men. There are other more tolerable HIV treatments available in the world--well over twenty medicines on the market now-- but D4T is cheap, effective and most importantly one of the few drugs that the Vietnamese government can afford to give out for free. Without D4T the children would get sick and die.
The friends, aunts and grandmothers hold, hug and cradle these children without fear or stigma. Their hands brush over open lesions and scars from healed infections. They hold limbs that look like they could break if squeezed too hard. Theirs is a love without boundary. Some of the children wriggle free from the grips of the ladies and run off to play. Two boys crawl under the doctor's chair and collect all the empty water bottles. They hand them out to the other children and who laugh and hit each other over the head. They are any and every other child right now. All too soon they will discover the differences. They will not be able to stay out all day. Medicines need to be taken on schedule,three of them, twice a day, every day. Even if they are in the middle of football matches or bike rides. Missing even a few doses a month can make the medicines stop working quickly and they could die. The mothers and fathers who survive on the same treatments must make the children know how important this this medicine schedule is. Irresponsibility is not an option for a six year old and that is hardly fair. They must take the medicine. If they can be compliant the day will come when they reach grammar school and with luck, their teens. Many of them will start to resent the medication and the special treatment. Kids want to be normal. A few of them will rebel and secretly stop taking medicine just too feel like every other kid. They will get sick. There may be a second chance with salvage medicine (one the treatment is stopped the three medicine "cocktail" can never be used very effectively again)if their local hospital has the medicines. Many do not and the doctors may not know how to use them even if they do have them. Most children end up going to the nearest National Health Center for treatment. This means more life disruption, more medication scheduling and more differences.
These children will probably not have many friends apart from the few they know from the clinic who've shared this experience. They will try to keep their HIV infection a secret for as long as they can, but children are not complicit enough to keep a secret like this for long. Especially when they are a little darker, more frail and smaller than the others. The communities are small and tight. Everyone knows whose parents are already dead and eventually they will know why. Little remains private, but families are strong and relatives will raise the children without hesitation. Occasionally you hear a story about abandonment--and there are plenty of orphans--but the doctors rarely see these orphans. They don't make it to the clinic.
These children here today, these little warriors, will be the soldiers of stigma and discrimination whether or not they want to be. This is nothing they will ever be prepared for. When I look at them they really look like any other children: shy and curious with an endless capacity for laughter. They can be happy at any given moment for only the price of a little attention or affection. I take pictures of them to freeze these moments in my memory.
I'm humbled by the strength of these kids to go boldly into an uncertain future as much as I'm humbled by the doctors who treat these children for a living. It takes a lot of heart and sacrifice. They say you learn survival by surviving, but I just don't know how or if I'd cope. The day wore me down from the inside. Tomorrow we are in another province. I'll numb myself with a third Hanoi beer, get some sleep and hope for the best.
Longest week ever.
The friends, aunts and grandmothers hold, hug and cradle these children without fear or stigma. Their hands brush over open lesions and scars from healed infections. They hold limbs that look like they could break if squeezed too hard. Theirs is a love without boundary. Some of the children wriggle free from the grips of the ladies and run off to play. Two boys crawl under the doctor's chair and collect all the empty water bottles. They hand them out to the other children and who laugh and hit each other over the head. They are any and every other child right now. All too soon they will discover the differences. They will not be able to stay out all day. Medicines need to be taken on schedule,three of them, twice a day, every day. Even if they are in the middle of football matches or bike rides. Missing even a few doses a month can make the medicines stop working quickly and they could die. The mothers and fathers who survive on the same treatments must make the children know how important this this medicine schedule is. Irresponsibility is not an option for a six year old and that is hardly fair. They must take the medicine. If they can be compliant the day will come when they reach grammar school and with luck, their teens. Many of them will start to resent the medication and the special treatment. Kids want to be normal. A few of them will rebel and secretly stop taking medicine just too feel like every other kid. They will get sick. There may be a second chance with salvage medicine (one the treatment is stopped the three medicine "cocktail" can never be used very effectively again)if their local hospital has the medicines. Many do not and the doctors may not know how to use them even if they do have them. Most children end up going to the nearest National Health Center for treatment. This means more life disruption, more medication scheduling and more differences.
These children will probably not have many friends apart from the few they know from the clinic who've shared this experience. They will try to keep their HIV infection a secret for as long as they can, but children are not complicit enough to keep a secret like this for long. Especially when they are a little darker, more frail and smaller than the others. The communities are small and tight. Everyone knows whose parents are already dead and eventually they will know why. Little remains private, but families are strong and relatives will raise the children without hesitation. Occasionally you hear a story about abandonment--and there are plenty of orphans--but the doctors rarely see these orphans. They don't make it to the clinic.
These children here today, these little warriors, will be the soldiers of stigma and discrimination whether or not they want to be. This is nothing they will ever be prepared for. When I look at them they really look like any other children: shy and curious with an endless capacity for laughter. They can be happy at any given moment for only the price of a little attention or affection. I take pictures of them to freeze these moments in my memory.
I'm humbled by the strength of these kids to go boldly into an uncertain future as much as I'm humbled by the doctors who treat these children for a living. It takes a lot of heart and sacrifice. They say you learn survival by surviving, but I just don't know how or if I'd cope. The day wore me down from the inside. Tomorrow we are in another province. I'll numb myself with a third Hanoi beer, get some sleep and hope for the best.
Longest week ever.
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