Infectious Disease & Stigma

Amidst all the hysteria over Andrew Speaker, the trial attorney who traveled on translatlantic flights while infected with XDR (extremely drug resistant) TB comes a voice of sanity from Stuart Rennie:

Despite his apparent low infectiousness (having tested negative on skin tests, not being symptomatic), despite the lack of one known case of contracted active TB within an aircraft, and despite physicians not expressly forbidding him to fly, Mr. Speaker is largely being treated as a kind of bioterrorist, a fugitive, or a 'rascal', as this talking head (Dr. William Schaffner) on CNN video refers to him.

[ . . . ]

Let's see how the other half -- in the southern hemisphere of our planet -- lives with XDR-TB. While Speaker was flown to a high-tech TB facility in Denver on private CDC jet, things look a bit different down in Brooklyn Chest Hospital in Cape Town, South Africa. There, XDR-TB patients can only get a hospital bed after many months, if at all, and MDR-TB patients fare no better. This means that there are many identified (and who knows how many unidentified) MDR and XDR-TB patients out and about in the Cape Town community. Whereas in America this would probably lead to mass hysteria, local health providers in South Africa take a pragmatic approach: since isolation is not feasible, these patients may have to be treated within community settings, and ways will have be devised to prevent them passing on infection to others.

Indeed.  As I commented in response to Rennie's post, assessing the social responses to infectious disease in the U.S. since its inception is in many important senses a narrative of stigma and deviance.  Reading the early articles on the story, I was fascinated to find buried way down in many of the articles a terse, almost grudging admission that Speaker was not likely to be very contagious at all, seeing as how he wasn't coughing, had no fever, and displayed no other symptoms of illness.

This is not to make light of a dangerous strain of TB.  But as medical humanities scholars of various stripes understand, studying a society's response(s) and meaning-making strategies in the face of disease reveals a wealth of information about that society's practices and beliefs.  And I personally found the response to Speaker's case vastly more interesting -- in a rueful sense -- than the fact that Speaker has XDR TB.

History, of course, is dialectic.

DIALOGUE: Laura Appleman over at PrawfsBlawg (h/t to Patrick O'Donnell). 

Comments

[Patricia Sidley]

The sentiments posted by Daniel Goldberg on the hapless XDR-TB victim's treatment as a "prisoner" in the US are probably well-placed. But they are not entirely based on fact. Here in South Africa, several dozen infected patients have effectively been incarcerated in isolation wards where there are any, and this has not been effectively challenged yet. Many patients are not treated in that way, not because there is a pragmatic approach to the disease, but because there are few facilities to deal with it. Unfortunately, if left to their own devices, having created the environment for XDR-TB to flourish (it is almost entirely a function of inadequate treatment for a variety of reasons) the health authorities would prefer to isolate those with the disease. This has been said in Parliament -- so it is not really a matter of contention. There has been almost no outcry from the public, although there has been from a few of the patients. I do not know what happened in the case of the US patient effectively jailed, but here in South Africa, most of those who have been diagnosed with the disease have displayed symptoms. It probably means there are many more who either are not reporting to clinics for fear of incarceration, or who are not displaying symptoms as yet. I don't think this strict type of quarantine holds the anwers, either in the US or here. Certainly, in South Africa where very little is in place to avoid contracting the disease, it makes no sense. According to several of our laws, as well as our constitution, it may also be a breach of rights. And aside from that, it does not seem to fulfill any serious ethical review either: not even a utilitarian view would hold up, as the desired outcome is by no means guaranteed by the measures taken when a patient is held under quarantine here, specifically for XDR-TB. It may be useful for other diseases, but not for this one.

[Patrick S. O'Donnell]

Daniel,

I think you'll find Laura Appleman's recent post over a PrawfsBlawg interesting (and she, yours...): http://prawfsblawg.blogs.com/prawfsblawg/

[Daniel Goldberg]

Hey Patricia,

Thanks for the update from my native country (I was born in Jo-burg and my parents are 2nd-generation South Africans).

Actually, the point about pragmatism was made in the quote by Stuart Rennie, who is far more knowledgeable on current public health policy in Africa than I.

But I take your point, and it seems to me we agree on the ineffectiveness of strict quarantine. Strict quarantine has historically not enjoyed great success in preventing epidemics, though, to be fair, some of that is affected by the typical historical resistance to quarantine policy.

Thanks for reading!

Patrick, thanks for the hat-tip.

[John]

I agree with this completely, thanks for the post.

[Patricia Sidley]

It may be of some interest to those following the incarceration debate, that down South in Johannesburg, a High Court case which is grinding fearfully slowly, will determine with a bit of luck the rights issues around XDR-TB and quarantine or isolation. The 13 victims of the disease and the health authorities who are confined to a hospital in Johannesburg in terms of a termporary court order, will have some representation when the full order is heard. The health authorities in Gauteng (the province which includes Johannesburg) told the court, without any hearing for the victims, that they were "striking" among other absurdities and it was literally the luck of the draw that the judge on duty, Kathleen Satchwell, who was a noted civil rights lawyer in the days of apartheid, issued a further order insisting that representation be found and paid for by the health authorities, so that the 13 patients' cases could be properly heard. The case, when it is heard, is particularly rare and will set a precedent which ever way it goes -- and will have constitutional repercussions. There are very few legal experts here who deal with that particular neck of the woods although of course, their are TB experts, and now naturally a growing body of XDR-TB experts. the lawyer representing the 13 is not, from what I could ascertain, one of the experts. On the civil rights issues, the HIV/AIDS legal activist group here, the AIDS Law Project could probably guess at the administrative law and constitutional law implications -- but there are local government laws peculiar to the spread of certain infectious diseases like TB.