Careless XDR-TB media coverage may tip 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.

Integration and chronic conditions on the WHO agenda

Is jumping in at the deep end really the best way to learn? Dr Margaret Chan should know, as less than three weeks in new job as WHO Director-General she opens her first meeting of WHO’s Executive Board today in Geneva.

In what she referred to as “optimistic times for health” she gave some clues about how her priorities might have evolved during her first 19 days in the job. Here are a few snippets I tuned in to in particular as I read her speech – you can get the full version of her address on the WHO site.

Not surprisingly, Dr Chan flagged integration of health services as high on her agenda. (Who wasn’t talking about that as a priority in 2006?) Citing the recent attainment of Measles Initiative targets, she highlighted the ability of the initiative to also deliver a “bundle” of interventions, including bed nets, vitamin A, de-worming tablets, as well as polio and tetanus vaccines.

“I view this initiative as a model of what can be achieved through integrated service delivery,” she said. “This is a value-added approach that amplifies the power of public health.”

That might work for measles and other child-related services, but it is not clear how the ‘model’ would translate into integration of TB and HIV services, for example, or the bringing together HIV and other sexual and reproductive health services.

The theme of integration also surfaced later in her address, in relation to health system strengthening, when she talked about the unprecedented number of partnerships, initiatives, and funding agencies now devoted to public health. Without referring directly to any American philanthropists cum technology giants in particular, Dr Chan emphasised the need for working together and to align with country priorities and capacities.

“Single-disease initiatives have their place, but we need to pursue every opportunity to find synergies that bring multiple results,” she said.

She added: “I further believe that when we use an integrated primary health care approach, we will find ways to inter-relate programme activities, and thus amplify our impact.”

She gave further clues of what is on her mind when she summed up the essence of one of WHO’s dilemmas, drawing attention to the ‘multiplicity of health initiatives focused on delivering outcomes’, and their common requirement for a functional health system.

“Yet strengthening health systems is not the core purpose of these initiatives,” she emphasised. “We need a common approach to service delivery.”

Possibly signalling an imminent (and long overdue) shift away from acute care paradigms that dominate much of WHO’s work and many health systems, the new DG made it clear she is fully aware that tools and strategies for taking action on chronic care prevention and management lay waiting in the wings.

“As the report on chronic diseases makes clear, we have many excellent opportunities for prevention and a broad range of interventions that are cost-effective in all our regions,” she reminded the Board. “For these diseases, prevention is by far the best option. WHO must continue to convince health leaders in all regions that chronic diseases are part of the development agenda.”

Finally, the new DG indicated that she is also on the case when it comes to WHO’s role at the interface of public health and free-market forces, and willing to consider new thinking in this area. Focusing on fixed-dose drugs for children suffering from AIDS, tuberculosis, and malaria, she recognised that such drugs are often not available because industry has no strong market incentive.

“As you know, we are developing a strategy and action plan addressing public health, innovation and intellectual property.”

The Executive Board (EB) is composed of 34 individuals technically qualified in the field of health, each one designated by a Member State elected to do so by the World Health Assembly. Member States are elected to the EB for three-year terms.

Dr Margaret Chan is from China

Brazil study creates an 'algal gel' news buzz

The chances are, if you follow the internet and other HIV information sources, you've seen a story in the past few days about a new microbicide candidate from Brazil that is derived from algae. The story goes something like this…..

An algae-based gel, highly effective at controlling replication in HIV, has passed initial trials in Brazil. Designed to block sexual transmission of the virus, the gel could provide vital protection for women in poorer countries where condom use is erratic….etc etc

(This snip is taken from the sci.dev.net coverage of the story, by Helen Mendes)

Nothing appears to be especially amazing about this story, especially when you compare it to similar stories that have surfaced over the past few years about one of lead candidate microbicides, Carraguard, that is made from a seaweed extract.

What is amazing though is how this story has been amplified throughout the world since it first appeared in a Brazilian newspaper (the Folha de S.Paulo) last Monday. If you now search Google for the full title of the article:

“Brazilian Researchers Test Algae-Based Anti-HIV Gel”

you get a whacking 23,000 hits. Try it for yourself, it is probably even higher by now.

(if the original Sao Paulo author of the story, Eduardo Geraque, does not know it already, please someone tell him that he is famous).

So what is it about this story or the way it was floated that gave it such a proliferation? It’s actually quite difficult to trace the story’s tracks, but a major boost seems to have happened when it was translated into English and put on the wire services by Agence France Press on the same day it hit the streets in Brazil. From there it was picked up by just about every health news service I have checked, as well as other news services such as Breibart, and a swathe of on-line news groups such as Google Groups and YahooNews.

But there is nothing incredible there that explains the huge buzz-factor. There must be something about the story itself that makes it worthy of such a pass-on rate.

Well, it is not a result of the high-quality science contained in the original information released about the study, which is weak by any standards.

Could it be that people love a story in which a small-fry comes good against all odds? (apologies to Luiz Castello Branco, of the Oswaldo Cruz Institute, Brazil, for calling him a small-fry, but my point is that he is not exactly Glaxo or Merck). Or could it be that it originates in Brazil/Latin America, from where we see very few stories related to health science and research?

No, I don't think so. My bet is that the world is so used to hearing disappointing news about the HIV epidemic, and so desperate to hear that the virus can be stopped, that it is willing to believe and propagate a scientifically weak but tantalizing possibility. The fact that the gel is made from algae - a ubiquitous, natural and free commodity - makes it all the more appealing and new age-ish.

By the way, the original story and the AFP release did not once use the terms ‘microbicide’, ‘vaginal’, ‘rectal’, ‘sexually-transmitted diseases’ or ‘spermicidal activity’ at all. Strange that. The furthest they went was to say: “Women can use the gel without the knowledge of their partner,” and left the rest up to the readers’ imaginations.

Alliance for Microbicide Development, Global Campaign for Microbicides, International

Partnership for Microbicides, Population Council, and World Health Organization specialists take heed: For a while at least, home-grown HIV prevention tools, including microbicides, may be 2007’s hottest property when it comes to the health news ‘buzz’. But, readers and editors may prefer to keep it simple and understated when it comes to thinking about actually using them.

(By the way, in case you are wondering the algae used by the researchers (Dictyota pfaffii) is shown in the photo above)

Whatever you do UNICEF, accentuate the positive

I am getting so tired of the habitual UN practice of pumping up the positive side of anything they do on AIDS, and leaving the bad news for the small print. It is so dishonest and deceitful. I have just read the latest and most staggering example I can recall.

Instead of launching your one-year stock-take of the ‘Unite for Children, Unite against AIDS’ campaign, why don’t you just admit it, UNICEF, progress on the global response to children and AIDS is appalling, and no amount of media spin will change the numbers. If this is your mandate, then you may have screwed up big time. But we're all human, right?

One year after the launch of the campaign, press releases with headlines like:

“Signs of progress and momentum in global response to children and AIDS”

do nothing to mask the fact that progress against the campaign’s four 'Ps’ are nothing short of shameful. Trying to claim otherwise to placate your donors, or whoever else it is you are stroking, is reprehensible.

Preventing mother-to-child transmission of HIV:

Despite your focus on the handful of “countries that have achieved breakthroughs in preventing HIV transmission from mothers to children,” the overall access of pregnant women with HIV to appropriate drugs is 9%. You were right to refer to that as “unconscionably low.”

The Campaign goal for this ‘P’ is: By 2010, offer appropriate services to 80 per cent of women in need

Providing paediatric treatment

How the global average of “one in ten children needing antiretroviral treatment receiving it” constitutes progress is beyond me. And indirectly claiming some of the credit for the paediatric formulation price reductions negotiated by the Clinton Foundation – which surely is something UNICEF itself should have been blazing a trail on long ago – is manipulative and conniving.

The Campaign goal for this ‘P’ is: By 2010, provide either antiretroviral treatment or cotrimoxazole, or both, to 80 per cent of children in need

Preventing infection among adolescents and young people

Again, you choose to accentuate the positive by saying: “The stocktaking report notes that prevention responses are displaying renewed attention on the need to focus strategies on adolescents and young people most at risk.” I am not even sure what that means, it is such circuitous wriggling. The 2006 AIDS Epidemic Update, published just two months ago, describes the state of this ‘P’ very clearly:

In many regions of the world, new HIV infections are heavily concentrated among young people (15–24 years of age). Among adults 15 years and older, young people accounted for 40% of new HIV infections in 2006.

The Campaign goal for this ‘P’ is: By 2010, reduce the percentage of young people living with HIV by 25 per cent globally

Protecting and supporting children affected by HIV/AIDS

The section of the release really clutches for something self-congratulatory to say, and plumps for referring to the significant reduction “in several countries” between orphans and non-orphans in access to education. In one of his last addresses as UN Special Envoy for HIV/AIDS in Africa, Stephen Lewis called the response to the needs of children affected by the epidemic “microscopic”. He also said:

It is impossible to understand how, in the year 2006, we still continue to fail to implement policies to address the torrent, the deluge of orphan children.

One of the chilling pieces of data UNICEF should be emphasizing is that only three to five per cent of orphans receive any intervention of any kind from the state.

The Campaign goal for this ‘P’ is: By 2010, reach 80 per cent of children most in need


Why is UNICEF afraid of just telling the truth? I thought that was what advocacy was about.

Thank goodness that some journalists have taken the trouble to read the report for themselves and are today conveying the considerable disappointment that UNICEF should be communicating about it:

Few pregnant African women get AIDS drugs: UNICEF
Scientific American

African moms still pass on HIV to kids
Pretoria News

UN Report: Response To Children With AIDS Insufficient
All Headline News

Spread of AIDS to children slowing, but picture bleak
Canadian Broadcasting Company

UN Says Global AIDS Effort for Children Falls Far Short
New York Times



Ann M. Veneman is UNICEF's Executive Director

Support growing for new global drug R&D framework

Looser patent control maybe on the horizon

Momentum is increasing behind a proposed global framework for drug research and development (R&D) that aims to share the benefits of scientific progress in the prevention, diagnosis and treatment of diseases more fairly.

An MSF-organised meeting took place this weekend in New York among about a hundred significant stakeholders, including drug developers, clinical researchers, health professionals, policy-makers, donors, and activists (see below). The symposium focused on TB drug development and highlighted current approaches as inadequate to respond to the urgency of the global TB epidemic:

• TB is the leading killer of people with HIV/AIDS and the inadequacy of tools to diagnose and treat TB are a major threat to the health and lives of HIV/TB co-infected individuals;


• We have inadequate and outdated tools for rapid diagnosis, inadequate and outdated drugs to cure many adults and children with TB today, and an inadequate pipeline to ensure our ability to cure the majority of TB cases in the future;


• We lack the basic biological understanding of this complex disease to anticipate the most efficient routes to prevent and treat TB;


• Clinical trials for drugs and combinations that could be done today are being held back because of a lack of funding and capacity as well as regulatory barriers;


• Meaningful gains in TB control will only be made when the treatment of TB, including drug-resistant TB, can be dramatically shortened and simplified.

The statement that came out of the meeting called upon governments, intergovernmental agencies, researchers, drug and diagnostic developers, nongovernmental organizations, and funders to take action in five key areas:

1. Accelerate drug discovery


2. Expand clinical trial capacity and accelerate clinical development


3. Support new approaches to R&D


4. Commit to global TB R&D leadership


5. Increase funding for TB R&D activities

But in the detail describing new approaches to R&D, the participants also gave their support to mechanisms that have been proposed to stimulate research around neglected and other diseases affecting developing countries. They said:

The lack of TB drug development is a result of the failure of current profit-driven drug research and development model. The TB community must engage in the World Health Organisation’s Intergovernmental Working Group on Innovation, Intellectual Property and Public Health to establish a global R&D framework to help design new ways of setting R&D priorities and financing.

With respect to TB drug development, participants of the New York symposium support current discussion at the WHO for an alternative R&D Framework that addresses the question of who pays for essential medical R&D and de-links incentives from drug prices, instead rewarding the impact of inventions according to health care outcomes.

What do these two points refer to?

In May 2006, a World Health Assembly resolution asked WHO to establish an Inter-Governmental Working Group on Innovation, Public health and Intellectual property. Their first session (in December 2006) considered ways to stimulate R&D for neglected and other diseases affecting developing countries; improve delivery systems and access; and examine sustainable financing mechanisms to ensure long-term benefits – effectively, ways to ‘de-link’ the R&D part of drug development from profit-making and drug sales. The ‘alternative R&D Framework’ is a part of the immediate remit of the group, and a plan of action that aims to find new ways to identify gaps in research on diseases that disproportionately affect developing countries.

So as well as re-stating TB drug development needs, the meeting participants also put their collective weight behind these new mechanisms, sending a clear signal to WHO to keep the momentum towards these new models going. This might not sound that significant, until you look at who was at the MSF meeting. According to a Newswise release just before the meeting, participants included:

Médecins Sans Frontières (MSF), Weill Cornell Medical College, World Health Organization, National Institute of Allergy and Infectious Diseases (NIAID) /National Institutes of Health (NIH), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), GlaxoSmithKline, Novartis AG, Johns Hopkins University Bloomberg School of Public Health, Bill and Melinda Gates Foundation, Columbia University, Rockefeller Foundation, European and Developing Countries Clinical Trials Partnership (EDCTP), Brazilian Society of Respiratory Diseases, St. George's Hospital Medical School of London, Global Alliance for TB Drug Development, University of Illinois at Chicago, Institute for Tuberculosis Research University of Illinois at Chicago, Yale Law School, Drugs for Neglected Diseases Initiative (DNDi), Tibotec, Denver Health and Hospitals, Treatment Action Group, and the Consumer Project on Technology.

In a paper describing the new R&D framework, one of the architects of the new R&D Framework – James Love, Director of the Consumer Project on Technology (CPTech) – nicely summarizes the failure of the current model for drug development and why the new framework is so vital:

Today's high drug prices are a direct consequence of a business model that uses a single payment to cover both the cost of manufacture of a drug and the cost of the research and development (R&D) carried out by manufacturers to discover it. A 20-year patent-based marketing monopoly is then granted to the drug's developers to prevent their prices being undercut by ‘generic’ copies produced by manufacturers who do not have R&D costs to recover.

At the NY meeting, Tido von Schoen-Angerer of MSF told Reuters there had been a "failure" in TB research with only seven drugs to fight the disease in clinical development, compared with 149 drugs for cardiovascular disease and one new HIV drug annually for the past 25 years:

"We have a pharmaceutical market worth $600 billion a year and there's a very clear issue," he said. "Research and development is patented and profit-driven and is not delivering to the patients that are dying."

Watch this space..... Progress of the new WHO Working Group and of the proposed framework will surely be on the agendas of the WHO Executive Board and the World Health Assembly again during 2007. This will likely move centre stage during the coming year.

The Cornell Club in Manhattan, where the MSF meeting took place this weekend.

List of Global Fund head nominees leaked to media

Following the disappointing failure of the Global Fund Board to select a new Executive Director for the fund late last year, a panel has apparently narrowed the re-run for the job down to a first short-list of nine candidates.

According to a document leaked to the Boston Globe newspaper, and published this week, the one woman and eight men are:

• Julio Frenk, Mexico's former health minister who was a finalist last year to be head of the World Health Organization;
• Michel Kazatchkine, France's AIDS ambassador and one of two finalists for the fund's executive director post last year;
• David Nabarro, a senior WHO administrator now leading United Nations efforts to fight avian flu and a possible human pandemic influenza;
• Alex Coutinho, a highly successful manager of AIDS treatment programs in Uganda;
• Carol Bellamy, who led UNICEF from 1995 to 2005 and now is president of World Learning, an international educational organization based in Brattleboro;
• Kunio Waki , a Japanese national who leaves his post as deputy executive director of the UN Population Fund at the end of the month;
• Jack Chow , a former State Department senior official who also headed WHO's AIDS programs;
• Arata Kochi, head of WHO's reenergized malaria program;
• Brad Herbert, former director of operations for the fund.

Surprisingly, and despite the independent ‘public-private’ nature of the Fund, over half of the contenders are former senior UN officials, or in one case a previous Fund employee. Donor countries also feature heavily in the roll: Seven of the nine applicants are from France, United Kingdom, USA [3] or Japan [2], and just the Mexican (Frenk) and Ugandan (Coutinho) nominees are from countries receiving money from the fund. Alex Coutinho, from The AIDS Support Organisation in Uganda, is the only candidate with a civil society background.

Following interviews with each of them, the Nomination Committee is scheduled to submit a shorter list of final five candidates to the full Board by January 22. The Fund Board’s Executive Committee meets in Geneva in early February to vote on the final candidates.

The outgoing Fund ED, Professor Richard Feachem, was recently knighted by the UK Queen in recognition for his role in leading the fund since its inception. It confers the title ‘Sir’ Richard Feacham. Majestic shoes, indeed, for one of the nine nominees above to fill.