[procaare] Careless XDR-TB media coverage may tip the balance on HIV stigma

["Tim France" <procaare@healthnet.org>]

Careless XDR-TB media coverage may tip the balance on HIV stigma
- Tim France
*********

Dear all,

Below is a version of an article/letter I sent to the Guardian yesterday in
response to their article on possible detention of people with XDR-TB in
South Africa. In my opinion, the PLoS article the newspaper used as one of
its sources reads like a proposal for an XDR-TB version of Guantanamo Bay.
It also has incredibly few peer-reviewed references to substantiate the
authors' assertions about numbers of people with XDR-TB in South Africa.

Later the same day, WHO also issued a statement on their position on this
issue, which can be read at:

http://www.who.int/tb/xdr/involuntary_treatment/en/index.html

FYI, the XDR-TB issue, and drug resistant TB in general, are being covered
on the Stop-TB eForum. You can find more information and recent postings
here:

http://www.healthdev.org/eforums/stop-tb

Tim

Tim France
Email: tfran@hdnet.org

-----article follows-----

Careless XDR-TB media coverage may tip the balance on HIV stigma
****************

We can't say we couldn't see it coming. One provocative PLOS Medicine
opinion piece was all it took, and today an African government, TB
researchers, clinicians, and mainstream international media are talking
openly about the possibility of forced detention of people with extremely
drug-resistant (XDR) TB. Much of what we have struggled to contain about TB-
and HIV-related stigma may be about to come horribly true in South Africa.

In an atypically unbalanced story published yesterday and titled:

"The dilemma of a deadly disease: patients may be forcibly detained"

the Guardian mused about XDR-TB causing a "global pandemic if it is not
controlled" in one breath, and went on to consider the human rights
"dilemma" that XDR-TB poses in the next. What they overlooked was the
possible impact this public debate could have on already stigmatising
attitudes towards people who are particularly susceptible to XDR-TB: people
living with HIV. In South Africa at least, when you talk about detaining
people with XDR-TB, you are effectively talking about people with HIV.

One word that should have been more heavily emphasised by the article was
"considering" - after all, the South African authorities are only
*considering* forcibly detaining people with XDR-TB. But that's a precarious
distinction that the article chose not to stress.

Instead, the paper opted to headline the *possibility* of detention, and
gave it further credence by adding that the government has "discussed [it]
with the World Health Organisation and South Africa's leading medical
organisations." And unlike its usually conscientious coverage, the Guardian
even went on to scapegoat an individual patient, who according to the paper
"discharged herself from a hospital last September and probably spread the
infection."

They further fan the dread by giving interviewees plenty of air time to push
the SARS/bird flu fear buttons by talking about XDR-TB possibly "swamping"
South Africa and "spreading far beyond its borders." Unfortunately, the
story offered no perspective from someone with, or affected by XDR-TB. Nor
did it give the World Health Organization (WHO) an opportunity to comment on
the effectiveness of detention as a public health measure.

Media attention like this certainly helps to spotlight issues around TB
control. But implicit messages that feed perceptions of personal
vulnerability, helplessness and scapegoating also adversely impact affected
populations by arousing stigma, panic and fear (see: Living on the Outside).

One reference of note would have been a document distinctive to the TB
field: The Patients' Charter for Tuberculosis Care. Initiated and developed
by TB patients from around the world, the Charter specifically outlines the
rights and responsibilities of people with tuberculosis. Further coverage of
XDR-TB would do well to refer to it.

A specific point mentioned by one of the Guardian's interviewees, but not
elaborated by the article, is that there is a good chance that most of the
XDR-TB reported in South Africa appears to have been transmitted within
health care settings. While it is also important to avoid an impression that
health settings are dangerous places, it does mean that in order to be
effective, TB infection control measures need to focus on very specific
places, including clinics and health centres. And this is something that the
WHO has just published revised guidelines on .

If a shift in TB- and HIV-related stigma does occur as a result of careless
media coverage of XDR-TB, it will potentially affect the lives of a huge
number of people. In South Africa alone, for example, there are about five
million people living with HIV, and they face the major threat posed by
XDR-TB.

With little evidence available about the extent to which HIV negative people
are susceptible to XDR-TB acquisition, the possibility that people with
XDR-TB will "leave the isolation wards and go home to die," as the Guardian
story put it, might yet turn out to be a more effective way to stem the
spread of the "deadly strain of tuberculosis" than padlocking the doors of
the clinic with the patients inside.

Tim France
HDN Key Correspondent, Thailand
Email: correspondents@hdnet.org


References:

1. PLOS article: XDR-TB in South Africa: No Time for Denial or Complacency
http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/
journal.pmed.0040050

2. Guardian article:
http://www.guardian.co.uk/frontpage/story/0,,1996612,00.html

3. Living on the outside is available here:
http://www.hdnet.org

4. The Patients' Charter for Tuberculosis Care:
http://www.who.int/tb/publications/2006/istc/en/index.html

5. Tuberculosis infection control in the era of expanding HIV care and
treatment
http://www.who.int/tb/publications/2006/en/index.html