Thursday, October 30, 2014

Ebola, the timely epidemic that reveals so much about US

By Isabel Manuela Estrada Portales, Ph.D., M.S.
Ebola, in many ways, has come at a crucial time in our world. I want to believe that the dead it is leaving in its trails will become the martyrs in the altar of a reconsideration of the systems and beliefs we hold so dear, and that are failing us so obstreperously.
There are many areas in which Ebola is showcasing the worst of us;  but there is no doubt the medical personnel that have rushed into the burning building at the risk of their own lives would be the saints that may elicit pity from a judgmental, and this time, somewhat correct deity ready to burn down the globe.
In a sense, Ebola is a condensed version of all the seasons of the famed series The Wire, because it reveals the disheartening truths about various areas of society at once: the press, the U.S. health care system, the global institutions, the non-profit sector, the government, even higher education institutions.
I recently wrote a piece about my problems about Ebola. I question in particular our lack of foresight, despite our oversized self-interest. I contend that, in most cases, our self-interest suffers from a terrible shortsightedness and immediacy. We appear incapable of doing anything other than react for fear of giving something away for free. Why should we spend money and resources on really helping those countries in a truly transformational fashion? That’s their problem! Then, when things come rolling all the way to our doors we have two reactions: shut that door as tightly as possible; and, if that’s not 100% safe, spend all the money necessary to make sure the problem is contained…preferably over there.
Ebola has shown the insides of the United States non-existing health care system, and they are ugly. We are surprised and amazed at the dire conditions of the West African countries Ebola is rampaging, but we should be ashamed of our own system. It has shown a lack of coordination – next to the many a times excessive technology we can’t stop parading around – and an inability to set and mandate clear guidelines that has contributed to engender further lack of confidence and panic in the population; while encouraging unhelpful, harmful and, perhaps, politically motivated actions from governors and local authorities.
The absence of timely guidelines is particularly perplexing because it shows incredible lack of foresight. Who was not reading the news? Was it so hard to imagine that we would have a couple of cases of Ebola landing this side of the world? I will say nothing of the after the fact explanations because they really ranged from the sad to the comical.
As a result, despite having only EIGHT cases of Ebola in the country, the population witnessed a never-ending parade of excuses, missteps, back pedaling, and the like, and they can only assume that the people who were in charge and on top of things, well, weren’t. This uncomfortable feeling leads to cries for building a cocoon and placing the United States inside it. And the usual suspects waste no time in encouraging such behavior with their scaremongering.  
Unnecessary and blanket quarantines are wrong on many levels – Are we ready to treat our soldiers we so chant as heroes like pariahs? The New England Journal of Medicine had an excellent editorial, Ebola and Quarantine that reasons it better than I ever could. I would focus only on the communications aspects. The quarantines do further harm by feeding the absurd level of panic already rampant in the United States. Whatever we are saying with our mouths is rendered invalid when the public hears we are quarantining people following the Sarah Palin’s protocol: basically, you get quarantined if you saw West Africa from your window.
While a lot better than unwarranted quarantines, the system of having State Health Departments following up with people is not so much a public health measure, nor a medical one, as a public relations effort to assuage fears. While I am all for communications efforts that inform and help reduce fear and increase dully preparedness, I think this is the clearest proof that we lack a health care system with minimal interconnectedness. Instead of those supersized attempts to centralize control, we should have all doctors and facilities around the nation in sync, and up to date with the protocols. We should be assigning people to their own doctors, who would follow up properly, instead of creating an overwhelming bureaucracy in which cases can fall through the cracks. If every person who comes from West Africa were assigned to his or her own doctor – or assigned one if they didn’t have one already – all communities and health care personnel would become prepared for the exceedingly rare eventuality of a case of Ebola. The nurses would be following up with those assigned to them on daily basis – very few persons per nurse, actually, since they would be spread around the country – and in the case of a temperature change, then appropriate protocol would be followed. In an interconnected system, doctors would report back immediately any development. We would learn very much, and the system would be strengthened as a result, because, the real question is: what would happen if we actually have another very contagious disease right here in the country, with the pitiful system we now have?
We have missed an amazing communications and educational opportunity with the family of Thomas Eric Duncan, the only one who has died of Ebola in the United States and who contracted it in Liberia. His fiancée and other members of his family were in close quarters with him when he was already infected, but, clearly, not infectious. None of them contracted it. We should be putting them on billboards, actually.
The politically inspired measures – quarantine, travel ban – emphasize the self-centeredness and ignorance that plague us. People are dying today, by the thousands. They need help today. But we are running around in circles trying to prevent that epidemic that apparently is marching down Time Square. It is amazing to hear the “kill the government” faction now saying that the government should protect us by quarantining the best among us. Of course, those same people would be threatening armed revolt if a connected health care system were to be proposed, in which medical personnel were reachable, trainable, organized, directed, and made accountable.  
The worst side of the Media has also surfaced – although, its best side has shown as well in amazing thorough pieces from The New York Times, The New Yorker, The Washington Post, NPR and others. The alacrity of the cable news and others – sadly, main source of (dis)information for many Americans – makes it seem the epidemic is trolling around the states. They pay lip service to the true mantra of “Ebola can only be transmitted through direct contact with bodily fluids” on their way to showing images of people in astronaut suits, charts of potential transmission courses, and discussion about how Ebola infected terrorists are crossing the Mexican border.  
As an article in the Post says, fearbola and its very real propensity for stigmatization, discrimination and unnecessary pain is spreading really fast and furiously. That fear brings about the worst in us and shows how little we care for those who we still consider others. The only part of religion I think is right is the one that says: we are all one. There is no us and them.
Even our acclaimed – and expensive – institutions of higher learning are helping to fan the panic flames. The Syracuse University dean of the journalism school dis-invited a Pulitzer Prize-winning photographer who had already passed the 21 days mark after coming back from Liberia. Her excuse: “We did not want to create a panic.” Seriously? What do you think you were creating around the Nation with that decision? Yes, this is also a journalistic decision, because you are telling the journalism students that it is OK to cater to hysteria and panic, which is exactly what the current Media has done. I am a mix of amazed and dismayed that other departments from Syracuse University - say, the Public Health or the Public Communications ones - did not protest firmly their school's association with obscurantism.
As Michael Kinzer, a medical epidemiologist for the Centers for Disease Control and Prevention, who has been fighting the outbreak in Guinea, said “Ebola’s not transmitted by the air. Fear and ignorance are transmitted by the air.”
The big picture is that Ebola is rampant in West Africa because these are very poor countries in which people often lack access to public health care. Ebola victims suffer in unhygienic conditions, and their caregivers struggle to keep themselves clean, Kinzer said. Burial traditions include close contact with the bodies. Under such conditions, a pathogen is not under pressure to evolve in a way that enables a new mode of transmission.

They, that is, all of us, need our help.

Thursday, October 23, 2014

Unconscious bias: Continuing the discussion

By Isabel Manuela Estrada Portales

I recently wrote a post, Unconscious bias: The importance of being Ernesto or how a Hispanic name influences your legislator, and as it went through my social networks, I received very interesting comments that I really want to share. I think this is such an important discussion, I decided to post some of those comments here – and my occasional responses. The comments are anonymous since I did not secure their permission to post them. I appreciate their insight and hope this discussion is broadened.

Commenter 1
Thanks for sharing this Isabel. I'm noticing that there appears to be a resurgence in the use of the terminology unconscious bias / training. I do however wonder whether what with increase challenges to all sorts of bias whether people have just got better at hiding / finding excuses for their biases. Is it really 'unconscious bias'? We all have prejudices but some of us choose to educate ourselves out of them and not to act on them. Certainly, if someone brings a behaviour to your attention, further repetition cannot be deemed to be 'unconscious'.

My response

Thanks for your thoughtful comments, Commenter 1. I would caution only one detail. The point of the unconscious bias research is to, precisely, focus on how much our biases permeate our actions regardless of our upmost and earnest desires. That does not mean that efforts to counteract them are futile, but that they have to be undertaken almost continuously. I mentioned in that piece how painful it is to discover your own biases, and that's not only your biases about "other" groups, but, ironically and sadly, against our own, because we adopt the societal biases, against our will. Counteracting them means real work. That's why we can look at it with some hope of correcting them at the action level. Thanks so much, again, for your commentary. This is a very long and arduous work. Let's keep at it...together.

Commenter 2

Great discussion! I like using unconscious bias as it is more acceptable (perhaps just semantics) and can reach out to individuals within an organisation. It does help make incremental changes as it starts with the individual however, it should not be used as a 'shield' to prove equality for the whole of the organisation. The organisation/institution has its own responsibility to not only promote equality but to evidence it. No matter how good the apples if the barrel is rotten, they are not going to last long!

My response

Couldn't agree more, Commenter 2. Right on point and thanks for bringing the organizational angle to it. Organizations - of any sort - cannot have unconscious biases...actually, they cannot have biases of any kind. People have biases which reflect on their actions, those, in turn, make the organizations' policies and actions effectively biased against - that is, having a deleterious effect on - groups and individuals. I believe the knowledge of unconscious bias also helps organizations and institutions because it can make their leaderships aware of not only their own biases, but of the problem as a whole, and they should be called to overcorrect and ensure that the policies are accounting for such historical and present discriminatory effects.
I am very much a stickler for exacting policies that create - actually, mandate - equality, because it cannot be left to individual transformation. Much to the contrary, as the policies that impulse equity in society take further hold and transform the landscape, our individual biases will subside - very slowly, for sure - as we see more people of all hues in all positions in society.

Commenter 2
Thanks Isabel. Totally agree that it cannot be left to individual transformation, there has to be a higher mandate, such as policies to provide assurance. In the UK public bodies have to demonstrate 'due regard' to equality in all policies by law. This helps but again you're right, it will take some time as both public and private bodies/organisations realise the full benefit of having an engaged and diverse workforce.

Commenter 3 
Interesting discussion but my question would be how can organisations be challenged from conscious bias for all equality strands? How many NHS senior managers think it's ok to recruit there family members?

Commenter 1 
A good point Commenter 3. But my question is, is that unconscious or blatant bias committed, perhaps, in the knowledge that no one dares challenge / whistle blow if they wish to keep their job! Unconscious bias does exist, but as Commenter 1 alluded to, he likes "using unconscious bias as it is more acceptable (perhaps just semantics)". I fear that such 'acceptable' terminology can be mis-used to shield responsibility and / or appropriate action by senior managers. It reminds me of the "I didn't mean it" or "That's not what I meant" syndromes that I grew up with...what's the difference or is that my own unconscious bias?

Commenter 3
Isabel, it has been a while since we connected. I just wanted to reach out and say I really appreciate the repost you made today about name bias. That bias also exists in medicine and health, and will do until somebody's health record exists 100% in their own language as well. Working with a predominantly Hispanic population in Yuma, Arizona, it is so apparent how these biases manifest themselves in the healthcare economy to the detriment of the patient and their family.

Monday, October 20, 2014

Idealism in politics and the upcoming elections

“Being loyal to philosophy means not allowing fear to diminish our capacity to think.
Max Horkheimer.

I am an idealist. I am also quite pragmatic. For instance, I was for Hillary last time around, because I thought she had experience and lacked fear. She had a spine that got only hardened by the humiliations she suffered in the public eye.
She also campaigned in prose, which made her looked less inspiring than Obama who campaigned in verse, but ended up doing many of the prosaic things Hillary had suggested and for which she was criticized - the individual mandate on the health care reform comes to mind.
I come from a place – Cuba, that is – where too much idealism ended up being the seed of a complete lack of ideals and ideas. Stagnation was the price to pay for a dream that really counted on men as they should be and not as they are. To say nothing of the greed for power of those directing the dream.
However, as a mother I have a serious problem with the idea of telling my daughters that politics, the stuff we use to live a civilized life, is vane, abject and devoid of principles.
I am an idealist who believe we actually can have it all because we have much more than we need, we just need to learn to share better.
I am an idealist because I believe that politicians should stand there and tell the truth. But I don't mean a truth that is merely not a lie. I mean the real truth that will hurt but that will make us all work towards common goals with our share of sacrifices.
We have brought upon ourselves this childish way politicians treat us now. We can't seem to be able to handle collectively the truths that we - or at least most of us - handle individually when it comes to our own life, income, home budget.
Yes, something gotta give. In order to have a decent healthcare system that covers the basics for everyone we all need to fork over some money. And, yes, those who have more should fork over more because the ones who don't have health insurance can't fork over anything. I am not a fan of the health care reform, because what I wanted and want is pure and simple universal coverage except for plastic surgery and liposuction. And, yes, since as far as I have heard abortion is not an elective beautifying procedure and can't be performed in a public bathroom without grave consequences, it should be covered the same way any other medical procedure would be. At the end of the day, abortion is always only illegal for those who cannot afford to travel to where it is legal.
I am so liberal that I am afraid I may end up on the right for going so far to the left. But that doesn't mean that I can accept the idea of taking the left side just because the right one absolutely stinks. And, yes, I'll go to the left regardless in the next election – Warren would be great, thought - because I'll be too afraid to let things roll and learn later that there was only one vote missing for Clinton, so we ended up with Perry.
I want a candidate who would bore me to tears but actually will do what needs to be done. I'm tired of the "have a beer with candidate" because you won't actually drink with them anyways. I do not need to fall in love with a candidate…they are usually to old fashion for my taste, and I have a man for the love thing. Unless we grow up as voters and citizens and start being willing to hear unpleasant truths and don’t condemn elected officials for making sound if hard decisions, we would keep going in this circus that we now witness…passively, painfully.

Thursday, October 16, 2014

Unconscious bias: The importance of being Ernesto or how a Hispanic name influences your legislator

By Isabel M. Estrada Portales, Ph.D., M.S.

As many who follow social sciences, I have been impressed with the studies of unconscious bias. I am rarely optimist about anything that may depend on the intelligence of humans to actually put to work the knowledge acquired through research and time to improve the human condition. Yes, I do know we cannot wait to take advantage of the latest gizmo or money making device. We are, however, much slower to make use of the accumulated social science knowledge to bring dignity, equality, justice...and bread to the wretched of the earth.

NPR reported about the latest iteration of unconscious bias research. The piece is What's In A Name? It Could Matter If You're Writing To Your Lawmaker, and goes into how a legislator's unconscious biases may influence not only the way she responds to a constituent with a Spanish name, but also how he votes on voter ID laws. See an excerpt...but do read/listen to the piece.
"Republicans who support voter identification are different than those Republicans who did not support voter identification," Grose says. "Among those Republicans who did support voter ID laws, the Latino constituent was very unlikely to receive a response from their elected official. The difference was almost 40 percentage points, which is just one of the largest gaps I have ever seen."
I shall admit that I am mildly optimistic about the potential of all the research about unconscious bias. It does two important things, one of them, certainly, sort of an indictment on our limited self, but the point is to go forward:
  1. It provides a rational explanation for the biases that we still have, which do explain a very significant portion of the pervasive racial, gender, ethnic and other disparities in all terrains of society. Understanding these biases and their effect is essential to change things going forward, because we continue to have the "You are racist/I'm not racist" fight, with very limited success. Many people are actually not bigots, even though they are as permeated by the white supremacist mindset that is the undercurrent of our society as everyone else. Therefore, they will act on their unconscious biases, and their actions - innocuous or well-intended as they might be - will have deleterious effects on the discriminated communities. Being conscious of their unconscious biases will make these people - and, honestly, all of us - a lot more willing to examine twice their actions, in order to make them coherent with what they consciously believe; with their conscious non-biased self. Obviously, if you are patently and shamelessly bigoted, you are just an idiot and a... and there ain't no amount or research that could fix that. 
  2. It also explains ourselves to ourselves. Yes, we live in societies subsumed in bigotry. We have been raised by and with it. We have our own biases against various groups. There is nothing saddest than doing one of the Harvard implicit association tests and realizing that you still harbor biases you thought you had already overcome. It is fine. You are not a bad person. (Trust me: I tell that to myself often.) The biases are unconscious because they are stronger than we are. They are "validated" by everything we see in our daily lives. The trick is that, through our daily biased actions we have managed to maintain the structure of society that underpins our biases: our economic choices, the people we hire and fire, the stores we patronize, the loans we approve, the rates we offer, the assumptions we make, the people we see as beautiful... The way we venerate men who talk sports incessantly but look down on the women who care about clothing. In a sense, this research gives us an out for those shameful feelings we dare not confess because our conscious self finds them repulsive. It also gives us a mandate: we need to act as people who know that our actions may be influenced by our biases and, consequently, act in ways that would counteract them. In time, granted, in a very long time, our daily lives will begin to validate the world our decent, conscious selves want to see. 

Tuesday, October 14, 2014

Scandalous Data. Dead Black Teens. Is It Time for Policing Police's Bias?

By Isabel M. Estrada-Portales, PhD, M.S.

I'm sure I'm imagining the racial disparity. I was taken aback by the excellent research from ProPublica, but, despite being more than marginally aware of the data, and of admiring the work ProPublica does, I must confess I had to do a close reading of the data more than once, and kept checking to see where the typo was.
Nope. No typo. This is the data, unbelievable and dumbfounding as it is. 
Do read the article.
Listen to the podcast.  
I'm just blogging a data point or two: 
  1. Young black males age 15-19 are 21 times greater risk of being shot dead by police than their white counterparts.
  2. The 1,217 deadly police shootings from 2010 to 2012 captured in the federal data show that blacks, age 15 to 19, were killed at a rate of 31.17 per million, while just 1.47 per million white males in that age range died at the hands of police.
  3. To even out the risk, 185 white teens would have had to be killed by the police over the same period: more than one per week.

Friday, October 10, 2014

Ebola, our short sighted self-interest and the crisis of ad hoc

By Isabel Manuela Estrada Portales

To live now, as we believe human beings should live, in defiance of all that’s bad around us, is in itself a marvelous victory.
Howard Zinn

I have questions about Ebola. Questions that rub me the wrong way. Questions people who work in this field should have had asked and answered long ago.
From where I am standing, the Ebola crisis can be summed up as the surprising discovery of health systems’ dearth. We hear once and again that the epidemic caught us all by surprise. It would be laughable, in other circumstances.
Richard Brennan, director of the WHO's Department of Emergency Risk Management and Humanitarian Response, said in a Washington Post’s article:

In retrospect, we could have responded faster. Some of the criticism is appropriate. While some of the criticism we accept, I think we also have to get things in perspective that this outbreak has a dynamic that's unlike everything we've ever seen before and, I think, has caught everyone unawares.

What were the major surprises?  

People are more mobile than during previous outbreaks of Ebola. You know how that is. We were all sleeping and the XXI century sneaked up on us. Yes, of course, even in Africa everyone has become more mobile. Moreover, it has been quite apparent that people have increasingly moved to increasingly crowded urban areas with appalling infrastructure and living conditions that wouldn’t be out of place in a Dante’s hell circle. If I were a virus, I would certainly be living there.

What we, as shorthand, call hospitals and health centers in the affected countries – and others - are not equipped to handle a contagion of the common cold, let alone a lethal epidemic. It is wrong to see the Ebola disaster as a single event, unrelated to anything else. As if, were not for this stubborn virus, people in the affected African countries would be having a healthful picnic every day. As we all know, the situation in those countries is dire. The health situation is direr. And, Ebola becomes an untamable nightmare because the health system infrastructure would have trouble dealing with a mild flu epidemic. What part of this is news not only to us, mere mortals, but to the organizations that work on this is hard for me to fathom.

There was not enough medical personnel in those countries, and, in particular, those areas. As I was saying…  
But after six trips to Africa during the epidemic, he [Keiji Fukuda, former CDC official and not WHO’s assistant director-general for health security] has seen a more profound truth: Global organizations can provide epidemiologists and laboratory help, but what these resource-poor countries really need are front-line doctors and nurses, and basic resources. In Africa, patients told him, “We don’t have enough food.”(Washington Post)

Historically wretched and exploited communities are suspicious of Western institutions and of their own ineffectual and, in some cases, corrupt and violent governments. This leads, of course, to the all so surprising scenario – covered ad nauseam by the media – of people “biting the generous hand” that comes to rescue them. The killing of aid and health workers pains me deeply. But, we need to understand what those aid workers may have seemed to people who have never seen them before, and who have seen their family members walk out of the house with a fever and come back as corpses. This is a tragedy in more ways than one. But it remains, essentially, our failure; and, mostly, their suffering. 

Some of this distrust became patent in the voices demanding: “give us the serum,” as they believed the West, once again, was hogging the lifesaving treatment, while Africans were left to die. We know that is not the case. We know the clinical trials were not even properly concluded yet. People, such as I, concerned with the unethical experimenting in communities of color or non-Western countries with lax protections for the research on human subjects, would have been up in arms in any other circumstance at the thought of, basically, testing this new medicine in desperate people. And yet, those voices in Africa were demanding it. The understanding – not to mention, the trust - of the whole situation was completely out of whack…and there is a history that leads to that.

The currently affected countries have burial customs that may lead to the easy spread of certain diseases. This is not new. The international organizations in these countries should have known this. Health education would have prepared communities to be receptive to the need to adjust customs in emergency circumstances.

Where is the foresight?

That is my overall question, actually. Where is the foresight of the people and the many organizations that are there to foresee? This is not even a failure of imagination, to use the tiresome phrase of the post 9-11 world. This is a failure of planning for the most obvious eventuality: that a disease that is exceedingly contagious can overrun an already exhausted healthcare system. Did we not see what cholera did to Haiti, despite having armies – even literally – of aid workers and organizations in situ after the earthquake?
The questions mount, though.

How are the billions invested in global health and development put to work? This question arose when the earthquake shook Haiti to its core, and the core was shaky at best. How come a country that had received so much money in aid for so long, and had such a network of NGOs on site offering technical assistance had such a lacking infrastructure that was completely devastated after the earthquake? Granted, few countries could deal with a catastrophe of such proportions, but Haiti showed it couldn’t confront it at the most basic level, given the paucity of its infrastructure, after billions on aid for poverty and AIDS relief.  

Are we still stuck in the mind frame of the single-disease pattern? Why are these countries so lacking in the primary care front that are unable to contain even the slow paced epidemic as it started? Now people are dying of other conditions that were supposedly more under control because the health systems cannot deal with a crisis and the usual grind at once.
Why all the money that is now going to contain – as best we can – an epidemic that is running circles around us was not put towards actually strengthening the health systems of those countries? Just with all the money spent in AIDS relief, how come we do not have a better-equipped healthcare system in those countries? The truth is that the per capita healthcare expenditure there is $30 per year.

If those countries had a decent healthcare infrastructure, there would be health education, so healthcare and aid workers would not be coming in for the first time when the bodies are on the streets, and people’s suspicions and fears are heightened.

Let’s acknowledge that we are going to help now for our own self-interest. Ok. Let’s work with that. We will end up spending the same or higher amount of money now; and we do not know how much we will need because the spread of the epidemic is hardly containable. So, exactly, what did we save by not putting the money up front?

In the words of someone much smarter:
There is nothing wrong with acknowledging that we act in the interest of other humans while at the same time protecting the interests of the United States. Perhaps it doesn’t matter why we care, as long as we do. But it is also worth remembering that every expert agrees that Ebola poses little danger to America. If we had sent that money at any other time, and put it to work improving the health-care systems in West Africa, it would no doubt have prevented the worst effects of this epidemic and saved many lives. It would have blunted the impact of other plagues, too—including fear, the most infectious of all. (The New Yorker)

I believe we should help countries in need because it is the right thing to do, but we don’t much care about the health and wellbeing of poor people right here in the Appalachian, so, what to expect about people a world over? Therefore, even if we just focus on our self-interest, and our fear of contagion, wouldn’t we have been better served by tackling this beforehand? It would have saved a lot of pain to peoples that can ill afford more hurt. It may even have afforded us the benefit of a cleaner conscience…