Category Archives: Research
Out-performing your peers with one hand. Sign of Strength.
When I was young, a teacher assigned me to describe my worst fear. My worst fear at that time happened to be loss of my hands. I made a movie about it, drawing clips from popular movies featuring Hollywood-style amputations. I even went so far as to give it a Stanley Kubrick-esqe title: Chopsticks. In college, as an operating room orderly, I hadn’t shaken the fear. I found that no amount of blood or sizable open incisions could turn my stomach. But, amputations transformed my old fear into a hard knot inside me. To this day, I vividly remember an 80-year-old woman, whose life was being saved, losing both of her legs simultaneously. I had to carry her legs to the pathology lab. I would have rather carried a corpse, young, beautiful and intact.
With that memory in mind, I saw a handicapped child several weeks ago. He was missing his left hand. Recently I remembered—with a bit of panic—that I forgot to record that he had had an amputation. That fact, surely, must go in any publication that results from my study. Or, he will have to be excluded from the results. Perhaps one of the research assistants recorded it, or remembers. They can be lifesavers, sometimes. How could I commit such an obvious oversight?
In trying to figure out which child he was, I conjured up my memories of the assessment, trying desperately to find an identifying feature. I remember looking at the end of his arm. There appeared to be a scar there, as if the hand had been removed (probably traumatically) and then surgically debrided. What calamity befell an infant that he lost a hand? I thought, with chagrin, that life in South Africa was going to be difficult for him. Life is difficult even for able-bodied men who grow up in the townships. I had briefly considered inquiring about his hand, but I didn’t bring it up. His mother didn’t either. I began the assessment, placing a small block on the table in front of him. The test requires the infant to take a block in each hand. He must then attend to or attempt to grasp a third block. What does an infant with only two hands do, when confronted with three blocks? What does a one-handed infant do, when confronted with three blocks?
I remember, then, that he picked up the first block and stuck it under his arm. Immediately, he picked up the second block and stuck that one under his arm, leaving his hand free to reach for the third. No other child had ever done that. Most of them, even the older ones, take the first two blocks, so both hands are occupied and then stare at the third, pondering how three blocks can fit in two hands. The test is about cognitive abilities, I remember thinking, Not motor. And he had found a solution that did not occur to other children. I soon forgot about his missing hand. It was, in fact, one of the most enjoyable assessments I have performed, out of ninety, so far.
When we got to the motor sections, I learned that the assessment does not require ambidexterity, only coordination. And he performed above average. Above average. His fine motor abilities are better than half of infants, anywhere in the world. He only has one hand.
In my reflections, I remembered one of Jesus’ strange, likely hyperbolic statements, “If your right hand causes you to stumble, cut it off and throw it away.” I think about taking that passage literally, and I shudder. Yet, to every infant but this one, possessing a second hand was a handicap. This one-handed infant showed creativity that would shame those who appeared normal; who appeared stronger. To him, he has no handicap. In fact, he displayed a strength that is unique to him. Objectively, he has no handicap.
I spend most of my days seeking some form of strength, some sort of ability that will allow myself to accurately describe myself as a man. Yet, this child shames even me. His strength requires attribution to weakness. I have so rarely seen strength in this world.
I have seen able men scrape themselves across pavement in a desperate plea for pity. I have seen beautiful, intelligent women sell themselves for a few dollars. And now, I have seen a one-year-old man, superlative and without handicap, humble and inspire the proudest man I know.
After these brief reflections, I gave up searching for his identity. I did not ask the research assistants to find out which infant had had an amputation. What reason is there to exclude this infant? What note would I make in my publication? The one-handed infant outperformed his peers, and therefore, was excluded from this study. The sentence does not properly belong in a blog post, let alone a peer-reviewed, scientific publication.
I recently had an opportunity to present at the Center for Disease Control journal club at its branch here in Pretoria. I had been introduced to some CDC people at a birthday party for Team America. Through them, I met Joel Chehab, the epidemiologist who runs the journal club. He is awesome. By awesome, of course, I mean he attended the Tulane University School of Public Health.
I picked a topic dear to most men’s hearts: their mothers. (Honestly, did you think I was going to write “boobs”? Why would you think that?) And a topic dear to mine: HIV-exposed, uninfected infants. And a topic close to Arianna Huffington’s: why I will never go into plastic surgery.
In the early 2000s, the World Health Organization had been recommending to HIV positive women that they wean early and abruptly. The idea was to maximize the benefit of breast feeding and to limit the risk of mother-to-child (“vertical”) HIV transmission. Sounds great in theory, right?
Unfortunately, as scientists, our collective common sense is either deficient or altogether lacking. It is therefore not to be trusted and even the most basic assertions must be tested, retested, peer-reviewed, misrepresented in the media, meta-analyzed, twisted for political means, discussed at conferences, ignored by many practicing physicians and, finally, rejected in favor of the null hypothesis.
Accordingly, the paper I presented places that specific, common sense WHO recommendation squarely in the latter category: rejected. Louise Kuhn is an expert on HIV-exposed, uninfected infants. (She works at the second best university in New York City.) In 2001 she and her colleagues began a study to test the WHO’s assertion. They gathered about 1000 Zambian, new mothers and separated them into two groups. One group was instructed to stop breast feeding abruptly at four months. The second group was instructed to cease breast feeding whenever they wanted. They found that, not only was there no benefit in terms of the number of infant HIV infections, but that early weaning doubled infant mortality.
In fact, their findings are more compelling than the above paragraph suggests. Almost all of the infants in Dr. Kuhn’s study were enrolled before anti-retroviral drugs were publicly available in Zambia. So, a huge number of those infants became infected with HIV. Today—about seven years after the study ended—the infant infection rate is much lower, because of the drugs that are currently available. So, Dr. Kuhn’s study under-represents the benefit and over-represents the risk of breast feeding.
Their conclusions: boobs are good. Aside from the innate male understanding that this statement is true, it also resonates with quasi-hippie bias that nature’s way is generally the better way.
More importantly, even HIV-infected boobs are good for babies. This news has a huge implications for South Africa, as one-third of all infants born in this country are born to HIV-infected mothers. The South African government has responded to this research by phasing-out its formula subsidies for nursing, HIV positive women.
As an aside, from my discussions with CDC staff and from my own observations, the barriers to breast-feeding appear to be more social than biological. South Africa functions like the US or Europe in that many mothers work. Moreover, unlike surrounding countries, there is safe tap water with which to mix formula. It is therefore quite difficult to convince a working, HIV-positive woman that breast feeding is worth the substantial effort required, notwithstanding the perceived risk to her child.
The experience of presenting to the 10 or so medical officers was a real pleasure. Though my critique of the paper was quite boring—it was a well conducted, compelling study, with few weaknesses to criticize—the ensuing discussion was fascinating. It ranged from PEPFAR programs to personal anecdotes about the dysfunctional South African medical system. (Quite honestly, from my experiences working in the district emergency department, South Africa puts the “fun” in dysfunctional. Har, har.) Perhaps those types of discussions are tiring for CDC officers up to their ears in programmatic politics, but I rarely get to be involved in high level considerations of health systems and programming.
I have been attending the journal club for almost two months and I have found the discussions a refreshing break from my day-to-day research. Other recently presented articles include the effect of point-of-care CD4 testing and an analysis of the effectiveness of PEPFAR. I plan to continue for the rest of my time here and I hope to get involved with a CDC study on cryptococcal meningitis early next year. And, if Joel will let me, I will definitely present again.
This is a problem. Every third infant in South Africa is born to an HIV positive woman. Even without the help of doctors, most of those infants are born HIV negative. With the advent of prevention of mother to child transmission programs (PMTCT), that HIV-negative number approaches ninety-nine percent. Nature is wonderful and medicine helps. Properly treated, pregnant women are very unlikely to pass HIV on to their children.
But to answer one question is often to confront a dozen more. This is one of those paradoxes. These infants get sicker more frequently with more severe disease than other newborns. They die at a much higher rate than their contemporaries. And no one knows why. There are theories, and there has been research, but no one has figured it out yet.
These newborns are called HIV-exposed, uninfected (HEU) infants. And there are a lot of them: about one in five infants born in Africa today are exposed to HIV in utero. One observer commented that any health issues displayed by this group represents an enormous public health issue for the entire continent.
These infants are the subjects of my research in South Africa. As background, I had to read fairly thoroughly on their health problems, the theories behind those problems, as well as prominent researchers in the field. I will share a few more posts as my research year continues.
Anyone can be a researcher! If you would like to join the self-indulgent world of research, start by learning how to write a scientific paper. Care of Matt Schultz.
I recently attended the Annual Workshop of Advanced Clinical Care in Durban. I realized – again – how religious physicians can be. The conference opened with the typical call to arms that normally surrounds the AIDS “crisis.” The charge was aimed at the audience of clinical providers present. The front line physicians were told that all of the tools needed to curb the spread of HIV were available to them, and they must only wield them effectively to win the battle. Susan Sontag would be horrified.
It is, in fact, far easier to eradicate HIV than I ever thought. South African doctors must only work harder, then the disease will go away. No, South African doctors only need to improve their clinical abilities when dealing with HIV-positive patients, then the disease will go away.
My sarcasm stems from a simple observation: the average South African doctor is extremely well trained, especially with respect to HIV. From my outside perspective, South African general practitioners routinely perform the tasks usually reserved, in the US, for infectious disease specialists. Is it fair, then, to say to this group of physicians, “You must work harder; you must get smarter”?
But that is exactly what was said. And, the major problem is that there are essentially only two paradigms with which to deal with HIV: Treatment (but not cure) and prevention. The former hinges on provision of HIV medications; and the latter is almost synonymous with modifying people’s behavior.
The news of the day was of the latter category: tenofovir gel. It is an antiretroviral drug that has been formulated into a gel and can be applied in a woman’s vagina before intercourse. A recent paper claimed a 40% decrease in HIV infection when this gel was used. There was much anticipation to hear the head investigator speak and much excitement about her findings. The major benefit is that it empowers women to control their own sexual health, without having to negotiate with their partner about condom use. It makes slightly less hazardous the dangerous sexual situations into which some women are routinely forced.
I found myself thinking rather negatively throughout the entire conference. There is, to me, nothing new here. What we now have is another preventative strategy that works marginally well with intensive education and follow-up. Even under the idealized conditions of the study, it was difficult to get women to use their product.
The most interesting talks at the conference, however, were by Steven Deeks from UCSF. He concisely summed an enormous amount of information and then launched into something completely different. What of the underlying pathogenesis of HIV? Is there some unexploited fault in the virus’ almost perfect reproductive ability? And, more broadly, how does our new knowledge of the immune system affect our understanding of other diseases?
In my opinion, that direction is where HIV research needs to go. What is truly unknown? Why publish a new edition of the tried-and-failing textbook we have written for the last 30 years? The epidemic in South Africa appears to have leveled only because the same number are being infected as are dying. It isn’t working.
And yet, the group of us in HIV research religiously hold to the idea that if we work harder or execute better, we will ultimately win the day.