Thursday, August 07, 2014

Ebola ethics

Interesting to see the kinds of attention that has been given to the most recent Ebola outbreak in Africa. Part of the reason is that it is a serious epidemic, causing nearly a thousand deaths so far, and it is occurring in West Africa, rather than its usual stomping ground of the Democratic Republic of Congo and thereabouts. Another reason is that some Americans overseas have been infected, and medically evacuated back home, so the story involves not only the familiar 'death exoticism' of faraway anonymous Africans, but has a US domestic component as well.

Perhaps because it involves American citizens, bioethicists have been more active in commenting on the ethics of Ebola control than they were during outbreaks of times past. Two of the infected Americans have been treated with an experimental Ebola drug, the access to treatment being aided and abetted by the National Institutes of Health and the Centers for Disease Control no less. Bioethicists, chronic worriers that we apparently are, worry about this development. If the drug has not been FDA approved, how do we know that it is safe and effective? Even if the conditions of the American patients improve, how do we know whether the drug itself is responsible, if no rigorous clinical trial has been conducted? Why would people continue to join clinical studies if they could gain access to experimental drugs outside the FDA's vetting system?

All fine and good, as worries go. But I wonder what would happen if the Ebola outbreak happened in Louisiana rather than Liberia. Would the American public and leadership -- including its bioethicists -- be so sanguine about waiting years for the results of clinical trials before trying some promising-looking drugs out? Faced with an infectious disease with a very high mortality rate, would we revisit and loosen the rules or hold firmly to the tenets of evidence-based medicine? Is the latter what happened, say, early on during the US HIV epidemic? Or is the ethics a bit different when it is largely somebody else's deadly epidemic? For its part, the World Health Organisation seems more open to the use of not fully tested treatments, for Africans, given that the current alternative for most of those affected is (as the Director of the Wellcome Trust put it) a tepid sponge bath and the promise of a nice burial.

UPDATE: The Scientist issued a short piece on the subject of Ebola and ethics last night, and USA Today has a piece up, with reader comments.

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Wednesday, July 02, 2014

Bring out your infected!

Public health emergencies reveal a brutal survivalist ethic within societies that normally lies suppressed. Normally, we are supposed to care about the individual choices of fellow citizens and protect their rights, but when an easily transmissible, life-threatening and incurable disease spreads in communities and exceeds our control efforts, rights and choices are transformed into dangerous niceties. That is when the sharper tools in the public health toolbox get pulled out: the involuntary interventions for the common good, the isolation, the quarantine, the mandatory testing. This all sounds routinely ethically justified in a robust, hard-headed, no-nonsense utilitarian sort of way. But there is a plot twist: you don't want the sharp tools to scare or alienate the population so much that they run alway from (or sabotage) public health efforts altogether. Tough love can have perverse outcomes.

Which reminds me of Ebola. As an educator in bioethics, whenever you want to provide an example of a disease that seems to ethically justify industrial-strength public health actions, Ebola fits the bill  even better than HIV or TB. Easy to contract, impossible to cure, and associated with a nasty clinical presentation and a very high mortality rate, Ebola evokes extreme fear that makes extreme responses to it seem commonsensical. This seems to be the case in Liberia at the moment. West Africa is undergoing an Ebola epidemic, and for its part, Liberia has had 61 cases in the past few months, with 41 deaths. The response? Liberia President Ellen Johnson Sirleaf has declared that anyone caught hiding suspected Ebola virus disease (EVD) patients will be prosecuted under Liberian law.

Will this way of 'being serious about the epidemic' help with disease control or quite the opposite? Families and religious organisations currently taking care of/harboring those with Ebola-like symptoms will probably need to be reassured that these patients will be given respectful, effective care. Shouting at caregivers of the sick may not work, particularly when you realise that when you hand someone with Ebola over to the health authorities, it may be the last you see of them.

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Tuesday, May 20, 2014

CIA-sponsored vaccination programs: spin and tailspin

According to Wikipedia, the concept of 'spin' in public relations circles refers to "... a form of propaganda, achieved through providing an interpretation of an event or campaign to persuade public opinion in favour or against a certain organisation or public figure. While traditional public relations may also rely on creative presentation of the facts, 'spin' often implies disingenuous, deceptive and/or highly manipulative tactics."

It might be worth adding a related concept to the public health vocabulary: tailspin. Tailspin is when, in the attempt to massage facts to persuade the public, you make yourself look completely unreliable or absurd. It is spin gone wrong.

I think today's press conference by the CIA could work as an example of tailspin. Dean Boyd, CIA spokesman, announced that the CIA has stopped (since last August) using vaccination initiatives in Pakistan in its spying programs, or what CIA director more delicately called the 'operational use of vaccination programs.' The CIA has also stopped using such programs to obtain DNA or other genetic material for security purposes. Such use of vaccination programs is not unknown to the local Pakistani population, notably militants hostile to American interests. More than 60 polio workers and security personnel have been killed in Pakistan since 2012.

Admitting the existence and halting of the program seems fair enough. After all, causal -- if not moral  -- responsibility for the deaths of polio workers and the rise of polio cases could be attributed to it. Where does tailspin come in? It is all in what you don't say, and how you say what you do say.

What you don't say: sorry. Apology does not come into it. Or an explanation of why it was stopped, because that might lead back into questions of causality and wrongdoing.

How you say what you do say:

Mr Boyd, the CIA spokesman, said "many obstacles" stand in the way of vaccination programmes, including myths they cause use sterility or HIV and claims they are spy programmes run by Western governments.
"While the CIA can do little about the former, the [CIA] director felt he could do something important to dispel the latter and he acted," Mr Boyd said. 

"It is important to note that militant groups have a long history of attacking humanitarian aid workers in Pakistan and those attacks began years before the raid against the Bin Laden compound and years before any press reports claiming a CIA-sponsored vaccination programme."

The public health implications of vaccination myths is an important topic. The value of this important topic being addressed by a CIA spokesperson, all things considered? Not so much. The virtue of the CIA 'addressing the myth' that that vaccination programs are spy programs by ... stopping using them as spy programs? Smooth. Arguing that attacks on aid workers pre-dated the CIA-sponsored vaccination programs? Great, but where is the data about numbers of aid worker attacks over time? Did they rise after the word about spying came out? No matter, the spokesman has already gone into tailspin ...

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Friday, May 02, 2014

Workshop on ethical and social science implications of HIV cure research

Now here is a piece of shameless promotion. I am currently co-Principal Investigator (along with Dr. Joseph Tucker) of a NIH-funded research grant exploring the ethical and social implications of research currently taking place on a cure for HIV. As part of this project, our working group -- with generous support from the Brocher Foundation and the UNC Center for AIDS Research -- are holding a workshop next week on this topic at Brocher's swanky conference center on the shores of Lake Geneva. Roughing it, I know. We will even have a Tweetmeister (or whatever they are called), sending real time bird-like signals about the goings-on in the workshop out into the Tweetosphere. The tweets will show up at @HIVCureWorkGrp, and workshop highlights will flutter over to our website at: http://searchiv.web.unc.edu.

I think -- and why wouldn't I? -- that the workshop topic is intrinsically interesting on many different fronts. Clinical cases which have been given strange Hollywood-sounding names (the Mississippi Baby, the Berlin Patient, and the Visconti Cohort) have indicated that we might be able to control HIV longer and more comprehensively than current antiretroviral treatment does. Maybe even cure it, whatever that means. What sort of ethical challenges would research in view of a HIV cure involve? What happens, socially, when a disease of this magnitude and global reach changes its status from incurable to treatable to maybe curable? What will this do, for better or for worse, to ongoing HIV treatment and prevention efforts? Is there something to be learned from other diseases in which a similar transformation occurred? What questions of justice will be raised by early introduction of potential HIV cures, given the problems of access to HIV treatment faced for decades by HIV-positive persons in developing countries? How does the new biomedical research on HIV cure relate to the many cures  that have been claimed around the world, on a regular basis, since the beginning of the epidemic?




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Thursday, May 01, 2014

Physician involvement in legal amputations and lethal injections

The government of Kelantan, a state within Malaysia, is considering the implementation of hudud, a particularly strict form of Islamic law. Under hudud, the punishment for crimes such as theft, robbery,  adultery, rape and sodomy would be flogging, death by stoning or amputation. The prospect of amputation, in particular, being considered as a form of legal punishment has medical authorities in Kelantan cringing and objecting. After all, who else but doctors are in a better position to perform safe and effective amputations? And who is in a worse position to perform such non-medical amputations, seeing that they conflict directly with the Hippocratic tradition? Limb removal, when not medically indicated, is hard to reconcile with the principle of 'do no harm.' Should the hudud come into effect, physicians called upon to conduct amputations will find themselves in a lose-lose situation: fail to amputate, and they will likely run afoul of their own government; amputate, and risk having their license revoked by their medical association. The situation is likely to strike outsiders as strange and barbaric: what sort of state contemplates cutting bits off their own citizens in order to punish them?

The case seems exotic, but it is not difficult to bring it closer to home. This week, there was a botched execution of a convicted murderer in the United States. What botched it, apparently, were the chemicals in the injection. Drugs of choice to dispatch convicts (such as sodium thiopental and pentobarbital) are in short supply, partly due to their ban by the European Union. So the botched execution was in essence a botched experiment. US federal law has all sorts of protections for prisoners when they are used in medical research, but when an experimental cocktail of drugs is administered with the intent of killing convicts, those protections fall by the wayside. Worse yet, in
17 US states with the death penalty, a physician is required to be present at such disturbing events. But it is not as if having a more effective means of killing would make the health care professional's involvement morally palatable. Medical professionals have no place in facilitating state-legitimated execution by injection, amputation or public stoning. If governments wish to savage their non-law abiding citizens, they should not be allowed to use medicine to legitimize what they are doing.

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Sunday, March 16, 2014

Truvada: the political pill

Perhaps it is not good form for one bioethics blog to refer to a discussion taking place on another bioethics blog, but this one is hard to resist. Truvada is an antiretroviral drug originally designed for treatment of HIV infection. But a few years ago, studies showed that use of the drug (as 'pre-exposure prophylaxis or PrEP) could help reduce the risk of getting HIV infected among serodiscordant couples, heterosexual men and women, injection drug users, and transgender women and men who have sex with men. The success -- even if it is only partial reduction of risk dependent on appropriate use -- prompted the approval of Truvada for HIV prevention by the FDA and swift action by influential US and international health bodies, such as the World Health Organisation and the US Centers for Disease Control and Prevention, who have released interim guidance on PrEP use.

So what is going on at the Hastings Forum about this? A provocative piece by Richard Weinmeyer entitled "Truvada: No Substitute for Responsible Sex" expresses deep concerns about the use of Truvada by members of the gay community: a 'prevention pill' will lead to reduction of condom use, further spread of HIV, and an erosion of sexual responsibility among gay men that was already happening due to the discovery of effective treatment and the transformation of HIV (in some settings, at least) into a more or less manageable chronic condition. Why, the author opines, can't gay men just use condoms? The choice for Truvada is (he goes on) a choice for personal pleasure above concern for other persons, and should not be condoned. This is technology in service of irresponsibility. And if gay men are not using condoms consistently (he goes on), then they are not likely to use Truvada consistently either. The argument sounds a bit like: you can't give gay men good things.

It is not clear why he singles out gay men (not the only population Truvada might benefit) or why a tool to help in the struggle against HIV/AIDS is trashed before it even gets out the box. That's the thing: Truvada has been approved for use as HIV prevention but has hardly been flying off pharmacy shelves. The allegedly reckless gay community looking for the 'new condom in pill form' haven't showed up. The reasons behind the lukewarm embrace are multiple, including cost issues, lack of an advocacy base and the suspicion that PrEP is just a way of benefiting pharmaceutical companies. In any case, it is worth going over to visit the Hastings Forum and watching the sparks fly.


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Wednesday, March 12, 2014

HIV drugs plus gender inequality equals non-adherence

Initiatives to increase access to essential medicines in developing countries is, of course, a good thing. It is the building of a lifeline. However, in settings challenged by the legacy of colonialism, hampered by unfair trade policies, and marked by poverty and oppression, it is no small feat to get the right drugs to patients and increase the number of patients served. It is a continuous struggle against the obstacles posed by transport and logistics, bureaucratic administrations, weak health care infrastructure, political inertia and the machinations of global pharmaceutical companies. And it is well-known that once the patients finally get the drugs, the struggle is not at all over. There are still problems of 'adherence', which at first sight may look like mere psychological unwillingness or carelessness in regard to compliance with a drug regime. On closer inspection, 'adherence problems' are really problems in integrating the taking of medication within the life-world of the patient. For one or another reason, it does not fit.

I recently saw a striking news item reminding me of the social complexity that stands behind 'non-adherence.' Apparently a significant number of men in Uganda, living with HIV but not open about their status, are taking medications from their HIV-positive female partners. When antiretroviral treatment was first being rolled out in Africa, I recall anecdotal reports of patients sharing their medicines with those without access to treatment. There the motive behind sharing was understandable and admirable -- a matter of human solidarity -- though the practice was dangerous as it meant improper dosing for all involved. The Ugandan case is different: the men probably would have access to treatment if they declared their status and appeared at clinics (apparently this is not just a Ugandan phenomenon). And this is stealing, not sharing, apparently facilitated in some cases by gender-based violence. So this is a new way of being 'non-compliant': having an aggressive partner unable to come to terms with his own HIV diagnosis.  

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