It doesn’t take much effort to discern the fact that patient and provider dynamics are changing. People, especially physicians rue what they call was once a sacred relationship, that has now been overtaken by corporate interests, the government, overzealous hospital administration or even the annoyingly-attention-demanding radio-buttons and check-boxes in the EMR. These external forces are certainly influencing the way patients and providers interact with each other. But a more fundamental force may be turning the relationship on its head.
One night in the ICU, I told two loving sisters to a 43 year old sickly cancer patient that their little sister was doing well. As the patient’s admitting doctor, the sisters were banking their hopes on me. They were trying to ask me probing questions, but fumbling. Then one of the sisters managed to spew out her fear. “Okay doctor, how is she doing? Is she going to be okay tonight? You can be honest with us”.
I could see what the harried sister was not able to put a voice to. I thought I would cut through the sisters’ fears and help them out with an honest answer.
“Are you asking me if she is going to die tonight?” I volunteered.
“Yes”, they nodded in affirmation, probably relieved that I could see through the veiled question.
“No she is not”, I said. “Thank god”, the sisters resounded together in great relief.
Immediately after, a sickening feeling ran through my stomach. I looked around. The nurse who was by the bedside gave me a hidden look of incredulity. I can’t believe you just said that, his eyes seemed to scream. The intern who was working with me walked out of the room. Later I learnt, he had just told the sisters he wasn’t too sure of the prognosis.
It felt like a weird contortion of the Murphy’s law: the one time you say something isn’t going to happen for sure, it is going to happen. Was my patient going to die just because I had predicted confidently that she was not going to die?
I had my reasons to feel confident about the patient. A few hours earlier in the ER, she had been in a rather bad shape. She was not breathing well, and appeared to be anxious and confused. We got her upstairs to the ICU, put her on a breathing machine and she started doing much better- she calmed down, her blood pressure was holding up well. The reversal was very visible. I felt happy.
Calmed by what was to be my ignominious hubris, the sisters decided to leave the hospital and go home. An hour later, I had to call them to say that their sister wasn’t doing well. An hour more or so later, I had to examine the patient with the the two sisters and the rest of the other siblings by the bedside, and declare her dead.
Talk about eating your own words.
Such is the treachery of the art and science of prognosticating patient outcomes. In order to deal with the complexity of such an arcane endeavor, doctors often resort to defensemanship: an art of ambivalating, avoiding sticking the neck out and commiting oneself to an answer. That way you may not really be right about your answer, but then you are never really wrong either. Sadly, the common understanding is that this is the best strategy for the doctor. There is hardly any incentive for the doctor to rightfully predict patient outcomes, whereas there may be a huge amount of liability associated with getting your prognostication wrong.
Despite all the numbers that you memorise from texts, generous experience and a dollop of common sense, it isn’t very difficult to make an idiot out of yourself trying to predict how a particular patient is going to fare in the immediate or the long term. You sure have tools to calculate average outcomes, but they are just that, at best a rough shot at predicting outcomes averaged over a population. There may be little corelation with the individual patient at hand.
Then how do you prognosticate immediate outcome on a ciritcally ill patient at an acute care setting. Is it even a wise idea to prognosticate outcomes in a critical care setting? Is the standard, this is the ICU, so anything can happen answer still the best we can come up with?
The reason I stuck my neck out and volunteered a definitive answer with this patient was two fold: first, the patient was really doing better and there was little reason to believe based on clinical experiene as well as the available data that this patient was going to die in the next 12 hours. Second, always saying I can’t really predict the outcome almost felt dishonest, when I know majority of the times a patient like this is not going to die in a situation like this. So if a more straight forward and honest answer was going to ease the sisters’ anxiety greatly, why not volunteer with an answer?
It is easy to rationalise this experience as a vital element of learning. Such experiences however, are double edged swords I believe. True, in the future, before I venture out with a definitive answer, I will swallow my words three times over and probably chicken out with an “anything can happen”. I will not get my answer wrong, and thus avoid the ignominy of it, but far more often than that, I will fail to get it right, and thus lose out on a chance to provide some solace to the patient and the family and provide a positive approach around a practise of medicine that is increasingly being usurped by the self defeating black art of the negative and the defensive.
The sisters were understandably shaken, but then they were immensely thankful for the vigil that we’d provided and the care that we had given through their sister’s final hours. They did not hold me up for venturing with an answer- they knew the impossibility of mastering this art. Much like I was able to decipher the intentions of their words, the sisters were able to decipher the intentions of my words- they were grateful that I had volunteered to say them aloud.
That was Virginia’s second visit to the hospital in the ten days of the new year. It also ended up being the last.
Virginia was a patient we all knew. She came to the hospital frequently. The aphorism of our intern year was, if you had not taken care of Virginia once, you were not going to graduate out of internship. And that was hardly an exaggeration- almost no one in my internal medicine residency class had been through their internships without admitting her at least once. I admitted her twice. She knew our faces- she never really knew our names though- although she would give us a bored “I know you” every time we met her in the ER exam bay for an admission.
That evening I was signing out in the ICU after a rather long shift; an attending physician came asking if we knew about a certain patient who had died in the OR the previous night. “Some Vivian Hunt or something”, he said. “She used to come frequently to the hospital”. You mean Virginia Hunt? I suggested. “Yes that’s the one”.
She died? A sigh of incredulity escaped my mouth; it suddenly felt as if a wall had fallen off the room we were standing in. Virginia had become some sort of an irrefutable constant in our working lives- I had met Virginia in the ER just a few day ago, she was in with some cold- and the constant was suddenly gone.
Memories flooded my mind on the drive back home. The first time I met her must have been sometime in October 2010, when I was still a greenhorn of an intern. She had come in with chest pain. “Are you my doctor?”, she asked, when I walked into the room. Yes I am, I said. “I need my Benadryl. I take 25 mg four times a day. And don’t give me the pills, they don’t do me no good. I need IV.” I was almost taken aback by my patient’s surefootedness. Her skin was dry all through, maybe it’s the kidney failure giving her the itch, I thought. I ordered the Benadryl. Virginia was happy.
On any given day, Virginia was as sick as anyone able to walk on two legs could get. She had a barely pumping heart with valves that leaked like a sieve, her kidneys did not work- she was on dialysis, she had seizures, she had had strokes in the past, her heart rhythm was abnormal and without blood thinning medications, she had a chance upward of 10 percent of being felled with a blood clot in the brain year on year. Barely in her early 50s, and Virginia was already walking in and out of death’s door everyday.
Every other week or so, she would come to the hospital with chest pain, or some variation thereof. Although the vessels in her heart were not blocked, she had enough reasons to have heart related symptoms. The constant fuelling on heroin did not help. Yet Virginia was rather unapologetic about her habits- any conversation about the risks of drug abuse ended with a terse “I know”.
In April 2011, Virginia had a major heart surgery to replace the leaky valves in her heart. The surgery went well, but within a week or so she was back in the ER. We were worried the new valve may have something to do with the chest pain she came with. The valve appeared okay, it was the surgical wound on the chest that was hurting. She had also managed to lay her hands on some heroin.
Every time she came in with something like chest pain, she would often develop some other problem in the hospital completely unrelated to the first one, like an infection. She would be discharged in a few days and then she would be back in a week or two. This went on in an unending loop. Virginia’s being in the hospital at any time was almost a given, not to mention the times she was admitted to some other hospital.
Stunned by her death, the next day I sat at a computer to reflect on her hospital visits. In 2012 she had been to the hospital 19 times. In 2011 she was in the hospital a whopping 51 times. After her surgery in 2011, we changed her primary care provider. She had 4 visits with him in the 20 odd months since then. She had a home health nurse visiting her every so often. In the last few years, she had had in excess of 100 x-rays, close to two dozen CT scans and every other kind of test imaginable. The only test she did not get done seemed to be a urine study- she just did not make any urine.
That fateful evening when she died Virginia had a fall at her home. She was dizzy when she came to the hospital. An initial CT scan was normal however within a few hours she was progressively worse. She was then found to have bled in her head. She was whisked to the OR and the blood collection evacuated. However she was not able to make it out of the OR- after half an hour of desperate resuscitation Virginia was declared dead.
Virginia is the very reflection of our healthcare system, it’s performance report: everything that is wrong and right about it, from over and inappropriate use, poor coordination, goals and priorities that are at times misplaced, to the availability of modern advances and plenty resources at our disposal. Too bad such bottomless resources were not able to save Virginia’s life. Worse still, our failure to steward such resources threatens to pull the entire economy, and everybody else down together in a landslide.Name changed.
The WHO FCTC (Framework Convention on Tobacco Control) has been trying to regulate tobacco production the world over by restricting the use of land available for tobacco farming. The reasoning behind this is two-fold: first tobacco has been singled out as the greatest preventable cause of death. Second the use of scarce farmland, especially in food deficient areas around the world, has been said to contribute to food shortage and hunger.
As expected, the convention has drawn the ire of tobacco farmers, the tobacco industry and their interest groups. Focal interest groups have amassed a war-chest to put up a fight. The FCTC isn’t any far behind; it has painted tobacco use as the greatest evil plaguing public health today.
What makes this battle interesting to watch is that both the sides have a valid point to the argument. The farmers point out, nothing gives them as much of a return from the land as tobacco. That is a valid argument, though not entirely so. Tobacco farming is very high up indeed in the value chain but projects elsewhere have shown that it is indeed possible to derive as much returns from the land by means of farming other suitable cash crops.
Tobacco related illnesses are known to cause almost 100 billions dollars of healthcare costs in the US alone every year. Such costs have to been borne by pooled resources, either through the government or through private insurance. So it is no surprise that people will look to curb such costs for the sake of the greater common good.
The FCTC isn’t the first blow anti-tobacco campaigners have managed to land at the tobacco industry. Tobacco tariffs are already stiff in many parts of the world. A few months ago the Australian government passed a legislation to enforce uniform (read visually unattractive) labeling on tobacco products, a move that has been upheld by the Australian High Court. Similar attempts are underway in many part of the world.
And some people are even talking about disallowing cigarette smoking without a license.
Legislating tough tobacco laws may however be the easy part. The exorbitantly high cigarette tax in New York has proliferated an entire industry trafficking cigarettes along I-95, from Virginia where such taxes are almost non existent to New York where such taxes are the highest. Gangsters that used to engage in gun and narcotic trade earlier now engage in the much easier and lucrative tobacco trade. This not only defeats the public health purpose of such legislation, but also causes loss of much needed revenues (illegal tobacco trade costs as much as 10 billion dollars in lost revenues in the US).
Our attempt at enforcing a strict ban on drugs holds valuable lessons. While enforcement has been very heavy in the US, drugs of abuse are still very easily available undercover and usage is alarmingly high in the general population. What this has essentially done is drive the whole trade underground. In the meantime, strict enforcement of drug control related rules has resulted in the largest prison population in the world in the US (25% of the entire global prison population). Incarceration on the other hand leads to its own irreversible social rot in the affected. Furthermore, underground drug trade in the US has fueled and fanned a drug Mafiosi in Mexico that has been declared almost impossible to wipe out even after the loss of tens of thousands of people in drug related violence and billions of dollars spent in the fight.
Tobacco certainly is one of the greatest preventable public health threats; tobacco use in no way should be encouraged or facilitated or condoned. However trying to force tobacco use to one dark corner using all our might may prove to be another social disaster the with hitherto unfathomed consequences, the way our battle with drug enforcement has been.
Educating and subtly modulating behaviour against tobacco use will likely give us the best results; trying to ham-handedly force people out of tobacco may ultimately backfire. After all, humans are a creature defined by free will; they certainly appreciate better health but also appreciate the the right to exercise their free will at least equally so.
It is no news a lot of doctors like to stick up a rather snotty nose to EMR, despite all the rage in town. The defenders of the EMR tend to label such doctors as archetypal Luddites, sticking to their archaic ways and unbecoming of change and the new times. But as is usually the case with any two heated but opposite arguments, the truth likely lies somewhere between the two extremes.
On an objective basis, there is no denying that automatisation of medical record keeping is the new way forward. In theory, if the machine could keep records for you and give it back to you when and where you want it, thus freeing up valuable time for the patient encounter, that should be winsome for everyone. That alas, is a vision of the EMR utopia, and let alone being anywhere close to such utopia, it is difficult to ascertain if we are even set in the road leading us there.
Sometime ago, exasperated at the sheer waste of time that the clunky new discharge module was causing because it would not work the way it is supposed to (my hospital is means challenged, so they are building a patchwork of cheapskate EMR suite on top of their legacy system from the 90s, just to placate the gods of CMS), I complained to the IT guy that the thing barely works! The guy was sympathetic and said- “look I know the discharge module sucks, just bear with it until the end of the year when we should be able to weed out the bugs” But that’s not all, I said, even if it were working just the way it is supposed to, the discharge still takes me longer than what it used to with paper. “That’s something you will have to learn to live with” he retorted, “computer records do take a longer time than paper, and there is nothing I can do to change that”.
Right there, I think is where EMR loses a lot of ground against paper records. At any practice, time is the most valuable resource, and anything that doesn’t offer a straight off benefit to save time will have a hard time being adapted. Add to that the inertia people have about their old ways and you have a deal breaker right there. (digression alert) I once heard an attending at the hospital say, “I really like the feel of pen on paper. Computers just don’t give me that feel.” The attending has beautifully symmetric cursive handwriting that looks like artwork on paper. And needless to say, she hates EMRs from the bottom of her guts!
That’s not all. Driven by the constant government whip to adopt EMR- no EMR, no pay (reminds me of junior Bush’s iconic rhetoric- if you are not with us, you are with them!), and an EMR industry that is hell bent upon imposing itself on healthcare (they can’t believe they don’t have a sizable share of the multi-trillion dollar healthcare bounty) a lot of makeshift EMR adoption has taken place. So you have hospitals where one part is using one system while the other is using a completely different one. At one clinic I recently worked at, we had to switch between 3 different EMR systems, just to get the patients records. And there still was the paper records not to mention the dictation.The constant juggling not only made the patient encounters time consuming and cumbersome, it literally made us curse at the computers and ruin an otherwise perfectly normal day at work. Patient volumes have gone down from 15-16 patients per day to a half of that after EMR adoption.
What’s wrong with the current adoption of EMR? Why are even the converted like me (most of us doctors trust me, are the opposite of Luddites, the first thing I learnt to do with a computer was write code; I freely use LaTeX and R) questioning EMR?
I think there are two reasons for such seemingly epic failure. First, how we interface with an EMR. Second how the EMR tries to impose its will on to us instead of the other way around. A keyboard and a point and click device may well have worked for many other interactions with the computer, but with an EMR it doesn’t always appear to be nifty. It is a common experience that most people find dictating their notes much faster than typing them. Accurate automated transcribers (current bunch of transcribers are known to be as much a 6 times more inaccurate over human transcribers) could really speed up record keeping, thereby selling EMR to the unconverted while saving costs over manual transcription. On the same note, no EMR is going to be see a faster adoption if something like writing a prescription takes a minute when in paper it barely takes 10 seconds. Right now doing something as simple as writing a prescription feels like running through a bunch of fire breathing hoops. Someone may argue, you can at least read it better, but don’t get me started on how the EMR can come up with its own ludicrous set of errors, something that would never be possible with paper.
Trying to impose a readymade architecture on to health care will not work. “It works for retail and banking”, some people seem to offer cluelessly. But a patient encounter is no visit to your bank cashier. And human body is not your bank account, it is way more complicated and it is bound to generate way more complex information that is difficult to straight jacket into the rigid and rudimentary pipeline of set information pathways. An ideal EMR is supposed to be a seamless body-glove; today they feel like the hangman’s cloak, not only are they cumbersome, dark and dreary and suffocating, under their apparition, they force things you to do things you wouldn’t otherwise do.
Such forced behaviour modification may make the administrator, the insurance company the government happy but I can’t understand how selecting a dozen pesky radio buttons (like the one that tells the patient to shower everyday; another one says- don’t smoke, if you do quit- tobacco counseling for the sake of the payer!) while doing the discharge makes the patient lead a healthy life or make his doctor particularly enamoured with the EMR, just because the government said so or that it made the IT companies a few million dollars richer.
Two unique experiments in health care are being orchestrated on either sides of the Himalayas. Both China and India are grappling with the ideals of universal health care(UHC): trying to provide equitable and accessible healthcare to the entirety of its populace, an idea that has been up for talks here in Nepal as well for a few years now. The lessons we learn from the either of our two neighbors’ experiments should prove to be very insightful.
Universal health care has been dubbed as the next big thing in public health. Its ability to shape people’s health over the next several decades has been thought to be nothing short of phenomenal. Our own priorities match hand in hand with that of UHC: the last constitution has enshrined universal health care as a fundamental right. But so have some 19 countries of Latin America, and numerous others all over the world. Without a formidable plan and commensurate action, such policies will be just that: vacuous rhetorics.
That’s where China and India shine. They are putting money where their words are and have a restless audacity to achieve out of this world results previously thought unattainable. Between these two giants, they aim to provide accessible and equitable health care to more than a third of humanity, irrespective of an individual’s ability to pay, thereby preventing people spiralling into a vortex of poverty due to a catastrophic illness as it often the case for poor and middle income people right now.
China has audacious plans. The country has earmarked more than a hundred and twenty five billion dollars in additional health care spending to scale up health services to its entire people, and by some estimates health care spending in China will easily top more than half a trillion dollars by the year 2020. Such spending will come mostly from the government, but private spending out of pooled sources like private insurance will also play a part. Between a hybrid network of public and private providers and pooled resources using public and private funds, China aims to achieve its goals of ensuring the health of everyone of its citizens.
India’s plans are equally bold if not bolder. It plans to provide a basic set of health services to everyone, with costs offset by the government from resources collected from general taxation. For a country that has helped rescue much of the developing world from their AIDS epidemics by means of its cheap generics, it is such an embarrassment that thus far, healthcare seemed so distant for a majority of its people due to unaffordable drug and service charges.
That is finally about to mend. And that is not an unachievable goal. Based on some conservative estimates, the government of India will have to spend at least 3-4% of the GDP on health, in order to achieve such results. That is not a big number to spend in healthcare: The UK government through the NHS spends some 8% of the GDP on healthcare. The US spends a whopping 18% of the GDP on healthcare, sixty percent of which comes from the government in the form of programs such as Medicare and Medicaid.
Current health spending by the Government of India is at around 1.4% of the GDP, only a quarter of the total health care spending. Two thirds of health spending in that country is out of pocket. As a result, for the poor the consequences of a severe illness are sometimes more catastrophic than the illness itself. No wonder then that poor people lose lives to an illness at an alarming rate, through lack of adequate care or by refusing to seek care, because the health system has failed them.
Our own experiences match much of India’s. A large section of our population has been effectively barred from formal health services. Like India, we have toyed with the idea of eliminating user fees at government health facilities to improve access to health care to a subset of underserved people. Research from much else of the world shows, user fees, howsoever nominal deter the most vulnerable and the marginalised from much needed health services. Revenues from such fees have also been shown to be a very poor and an unreliable means of financing health care. Our results since eliminating such fees have been encouraging; health services usage has gone up in these select groups.
It pays for us to be cognizant of a mix of insurance based and government funded healthcare system like that in China, but that may be difficult for us to implement given that the organised sector through which we could implement employment based insurance system is miniscule. Leaving health care hostage to a predatory for-profit multi-payer private insurance system like the one in the US should not be anyone’s idea of universal health care given how such has healthcare system has systematically excluded a sixth of the population in that country, even while it threatens to usurp the entire economy due to runaway costs.
While stalled politics in the country has left every other priority on the back burner, tomorrow’s Nepal can’t be built no matter what kind of ingenious constitution the politicians come up with, if today’s children continue to risk perennial ill health and preventable death. Our commitment to universal health care is barely a start to end this injustice. Realising this dream will mean matching the talk with the walk, much the way our neighbours are starting to do.
The New York Times recently did an expose on hospital overbilling by a group of cardiologists at some hospitals owned by the Hospital Corporation of America (HCA). Immediately after a few days, a rather gloating article about how HCA had become the poster boy of Wall Street with its double digit growth strategy appeared. If the first story had not raised enough doubt about the prudence of the profit motive in healthcare, the second story rammed the point right into place.
Back in the 1950s Kenneth Arrow (a side note: the Nobel winning economist is Larry Summers’ uncle if that’s of any interest) published a paper in the American Economic Review about how healthcare is unlike any other commodity that is freely tradable at the markets. The core of his argument was that healthcare unlike regular commodities follows a warped logic that does not bow at the altar of demand and supply economics.
Here’s why: first, there is no real linkage between demand and supply with healthcare. In ordinary market economics, demand and supply tend to have an inverse relationship with each other. Not so with health care; since nobody can really predict the need for a certain health service. And when you do need it, there isn’t really the time to shop around. So the demand and supply can’t really be moderated based on each other.
Second, and equally important, is the fact that there is a huge information asymmetry between the provider and the consumer of the service. As a result, not only is the consumer not able to shop around for healthcare when he needs it, he has no idea about making an estimate about the quality of the same. Think about haggling around for a cardiac cath when you have a heart attack. Or for that matter, think about trying to second guess your doctor when she says you need a certain procedure. That puts the doctor at a rather unusual predicament for a service provider; he is not only the provider but also oftentimes the person who determines when there is a need for a certain service. In an idealised situation, the doctor is expected to not only provide services to his consumers, but also be a vanguard the interests of his patients and the society at large.
When doctors are able to fulfill that obligation as the custodians of the well being of their patients and communities, that’s where they derive their reverence. When doctors choose to forgo that obligation, like the Florida cardiologists, it is too easy to make a quick profit. The price that you pay for earning that quick buck however depends upon how much of importance you place upon your moral obligations and failings. Physicians have ordinarily been expected to subscribe to their own ethical tenet. When they fail to do so, they can do undue harm to our communities by virtue of the trust that has been laid on them. The lure of money can be a powerful force to cause a breach of such trust.
And that has already been happening at an alarming pace. HCA is a very relevant case in point. Fuelled by their own greed and the pressure from their administrators to upcode on their services as well as provide services that were not really required, these doctors sold themselves for a quick buck.
Like the NYT story points out, it’s for a reason why the for profit healthcare industry has become the new darling of the private equity industry. At a time when demand for goods and services is sagging almost everywhere, healthcare continues to be a major exception. And when the provider himself can be the arbiter of demand, that is too fertile a ground for private equity firm to not try to stick its feet in.
One may argue, so what is wrong with making money if they provide better services, bring in efficiency and add value to the system. Here’s why that argument is faulty. First, the Florida story is a firm rebuttal to the fact that for profit hospitals provide efficient services. They just provide services that makes them more money irrespective of the need. That loses money for everyone in the longer run. Second the belief that such hospitals create value is faulty as well. Paul Levy has a really interesting blog post on his Not Running a Hospital blog, about how private equity firms dress up results for the short term for the consumption of wall street, fatten up the stock and make their quick exit, while holding such institutions hostage to maverick financial instruments in the longer run. There is a reason why the term “vulture-capitalism” sticks. Dive in, make a quick buck and make an equally quick exit.
A third argument is made about how private entities bring in investment that no non profit institution would have been able to manage on their own. That argument too has no merit when you consider the fact that, as Levy mentions, no for profit hospital will have access to cheap capital the way a non profit will have given the need to pay taxes, the lack of access to charitable donation and the constant need to placate the demigods of the markets.
As long as healthcare continues to be a societal good hinged on our belief that it should be a right for all irrespective of the ability to pay, health care services will not be tradable like every other good or service. When it’s defined as a societal good, healthcare is too easy a target to profit from; and making a quick buck out of it is not a terribly difficult thing to do; unfortunately such profiteering tends to be antithetical to larger societal interests. Either the profits or the common good. Unless we recognise that fact,our confusion with whether the market is the best vehicle for delivery of healthcare will continue to throw up buccaneers like these that try to make a quick buck at the expense of everyone else.
I think my patient hates me! Okay I will admit I am sure she hates me. If it’s any consolation, she hates all her doctors at the hospital. Up until this morning I’d been thinking she hated me a little less than everybody else, by the afternoon I managed to gravitate right to the top of her hate list.
The 78 year old codgette is not entirely without charm though. This morning, for a change, I wasn’t running around like a squirrel, so during my morning rounds I drew up a chair by her side and had a rather longish conversation. She seemed to appreciate that. She even gave me what looked like a begrudging smile.
Resentment however, was still the overbearing emotion during the entire conversation. The lady thinks she has no business being in the hospital. I don’t blame her for that. She thinks I am keeping her here for no reason.
How would you feel if you were brought to the hospital because your daughter thought you were a little short of breath, and the doctors at the ER admitted you because they found a fever on exam which you never experienced, all the while you never really had any inconvenience or felt anything?
Since the admission almost a week ago, it has been just more of the same. Everyday the lady thinks nothing is wrong with her. We however, ever so cautious in tracking the fever, manage to find one spike of fever at least every day that makes us nervous. Okay there are reasons: she is on on an immunosuppressant, and her temperatures records are rather high. However I still don’t have an adequate explanation for the lady.
The enterprising and ever so inquisitive doctors that we are, we never fail to dig. First we start lowbrow, with a simple infection screen. We fail to find anything, and the digging gets deeper. In no while, the digging is walrusian. Yesterday we got a few CT scans, we do the blood works every day. If anything the lady thinks she is starting to get weaker due to the constant blood draw.
I have a hard time justifying all that we are doing. A snippet of our conversation this morning.
Lady: Why are you keeping me here?
Me: You have a high grade fever. We think its viral, but we are not sure. We are trying to find out why.
Lady: So what did you find?
Me: Well, really nothing thus far.
Lady: So what are you going to do now?
I wanted to say we wanted to do a few more tests, but I simply did not have the liver to verbalise that. I kept mum and gave her a vacant stare.
I did not have to. The lady already knows that.
Yesterday the attending physician had ticked her off on a possible spinal tap if the CTs came up to nothing. The lady was livid. We pitch the idea to her daughter. She has been having headaches now. She complains of weakness. And the fevers. With the suppressed immunity, there are reasons to be worried.
The lady half heartedly approves the procedure, all the while not really hiding her indignation toward all of us. We plan the tap for the afternoon today. I tell her not to worry, the procedure will be over in 10 minutes. Let me try that on you first- she retorts!
Afternoon comes. The lady asks who is going to do the procedure. I tell her I will. The lady is incredulous; she invokes the name of god. Her barometer rises, I can see her fuming. Right there I ascend to the top of her hate list.
The procedure thankfully is smooth. I ask the lady to lie down afterward. She does, and our eyes cross. She rolls her eyes away from me. I don’t really have to guess how she feels about me. What are you going to do now, she asks me, while she looks out of the window. I am going home, I tell her. Good for you she says, the sarcasm very visible.
I call up the hospital later in the day to find out the preliminary results of the tap. Everything normal. I can already imagine my conversation with the lady for tomorrow.
What a span of 30 years can do.
Fear can ferment; havoc can be wrecked.
For the brave, such fears can be confronted, courage can be mustered; challenges vanquished, the sweet taste of victory savoured.
A generation can be born and come of age. Epochs can be defined. All in a matters of 30 years.
Some 3 decades ago, HIV was a nameless virus without face or form. By mid 90s, it had managed to become the number one killer of young people in much of the world. Within these 15 years, not only had the virus gotten its feared name, it had also managed to reign terror in our collective psyche; HIV had become synonymous with a death sentence.
Up until today, some 25 million people are estimated to have died due to the virus including more than 4 million children. Around 34 million people are walking around with the virus.
In some sub saharan countries, as much as a third of the adult population has the virus. Without much access to treatment, entire cohort of people were wiped out. Schools ran out of teachers, farms out of farm hands, factories out of workers; even hospitals ran out of health workers. Homes ran out of parents, leaving behind helpless kids and equally helpless grandparents to tend after them.
Economies shrank, nations were shaken.
To those who were infected, as much physically debilitating the virus was, it was equally emotionally stigmatising. Infected people were treated as social scum, their moral standards were questioned. The readymade assumption was, if you were sleeping around shamelessly what better did you expect? Well the little unborn kid had little where else to sleep but for the mother’s uterus. No one was willing to take note of the invisible socio-economic drivers that were fuelling the epidemic in the most vulnerable patient populations.
In late 1980s AZT came along. By the mid 90s a bunch of other medicines followed, and also the spark of idea that drugs worked much better in combination than as standalone preparation. Science continued to advance, the virus as much form-shifting as it was, was better understood.
In the same time an avalanche of advocacy was launched. Governments were forced to sit down and listen, societies were exposed of the duplicity of their mockery of infected people.
An outpouring of generosity ensued. The US alone spent billions of dollars in form of the President’s Emergency Plan for AIDS Relief (PEPFAR) so treatment access could be increased across the developing world, mostly in Africa. Resources were pooled, in the form of the The Global Fund. And startling progress has been made since then. In what looked like an insuperable suffering, now the advance of the tide looks like has been halted. 8 million people in the low and middle income countries alone are in AIDS treatment.
Today before the International AIDS Conference kicks off in Washington DC, there is much we can sit back and reflect over the journey of the past three decades. AIDS deaths have been showing a steady decline, from their peak of 2.3 million in 2005. 100,000 less AIDS deaths were estimated last year than the year preceding that; there were also less new infections by a similar margin. Infections in newborns have been downtrending steadily as well.
Suddenly “halting the tide” and an “AIDS free generation” do not sound like a hyperbolic activist slogan anymore. They appear to be within the reach, given a steady commitment on a global scale to upturn this menace.
Things indeed look like they have come around a circle in these 30 years.