June 9th 2014
'The WHO's new Post-2015 Plan to create a World that is free of Tuberculosis'
Part 2 - Some ideas for action...
The World Health Assembly has really embraced the word “ambitious” – using it as the fundamental adjective to describe its 2015-2035 Plan which is intended to staunch the current TB pandemic into near-submission in the nxt 20 years. There certainly can be no doubt that the Plan does amount to being a very ambitious initiative. In fact, it is so ambitious that it’s difficult to believe that it was so unanimously adopted by those who are now effectively faced with the daunting task of actually implementing it. In fact, when we first read it we found ourselves wondering whether its aims might have been drafted a little more realistically in the hope that they might be more easily achieved – but then we realised that the luxury of using more realistic strategies has been squandered in the 20-year post-1993 period of global ambivalence and indecision. The disease has been allowed to get too far ahead of the efforts that have been made to contain it and things need to change.
There is actually no choice left now but to develop such ambitious plans and then either live or die by them. This is, after all, what this Plan is all about - life and death. The WHO should be congratulated for developing it, and the Assembly should be equally congratulated for having the courage to endorse it. The trick, however, is not in agreeing to to the strategy, because that’s easy – it’s going to be in not allowing those targets to slip. In truth there exists a very strong possibility, even as the signatures remain still wet on the page, that they will have already started slipping and may well have slipped dramatically by the time of the first waymarker in 2020. Everything possible needs to be done to prevent this.
So exactly what might be done right now to avoid this happening?
Actually, there might be a lot, but, just like the Plan itself, the actions required will need to be both bold and ambitious.
One important initiative relates to the requisite level of popular activism to promote much better awareness and to demand more accountability for the management of the disease. Both of these have been in far too short supply with TB.
Generally, when the words ‘activism’ and ‘TB’ are applied in the same sentence, they are more often than not linked to ‘HIV’. This is sometimes because HIV activists are involving themselves in promoting awareness of TB, and sometimes it's because the limited successes of TB activism are being negatively compared to the extraordinary achievements of HIV activists in the last twenty years.
There is something of significance that needs exploring here. HIV activism has gone through two quite different phases of activity in this period. Today it is largely based mainly on collaborative engagement and involvement but this was not the way it was at first. As far as HIV is concerned today, the dam that had to be broken was breeched fifteen years ago, but it was not the style of activism as employed today that first broke it. As far as TB is concerned, however, the wall of the dam has not really even yet been inspected properly for its points of weakness. As such, it might be worth looking back to twenty odd years ago - at what broke that dam as regards HIV rather than simply trying to use the same tactics today as the HIV activists are now using.
Twenty years ago, public awareness of HIV and the general attitudes to the disease were entirely different to how they are today. As an example, a primetime news report from the late 1980s suggested that 50% of Americans were wanting those people infected with HIV to be quarantined – and 15% were wanting them to be tattooed so that they could more easily be identified. This was the world of blatant hostility that the early HIV activists had to confront.
The activists' early approaches were confrontational and unambiguous. In 1990, for instance, they brought Whitehall, the parliamentary heartland of London, to a standstill by staging a mass die-in outside the offices of the Department of Social Security. In the USA things were taken much further as more and more victims of the disease were dying. The symbolic representations of HIV deaths in such die-ins were morphing into public protests which uncompromisingly involved real deaths – in the scattering of the ashes of victims of the disease on the lawn of the White House, and even, in one instance, with a body being carried through the streets to a public park where the casket was opened for a public funeral.
What was fuelling such an aggressive and uncompromising campaign was the energy and know-how of a gay rights movement that already had experience of fighting active discrimination against it – some of which was still legal at the time. Stepping into line behind it came a stream of celebrities who joined the campaign as the movement’s momentum gathered and as it began to succeed in its aims.
The grave necessity for a similarly confrontaitonal style of activism for TB is no fantasy. On the 21st May, Phumeza Tisile, a former XDR-TB patient from South Africa (one of the lucky few who survive), presented MSF’s 'Test Me, Treat Me' Drug-Resistant TB Manifesto to Mario Raviglione of the WHO and to the 67th World Health Assembly in Geneva, Switzerland. MSF's petition had been launched on line nearly two months earlier – but the number of signatures on the petition that Phumeza finally presented amounted to just 53,000. If this doesn’t tell us something about the general disinterest in this disease, then nothing does. MSF are the loudest voice in the world of TB activism today and they carry enormous credibility. If these guys can only raise 53,000 signatures for a petition for such a massive humanitarian problem then something very serious needs to be change. The pharmaceutical industry, for instance, would be employing a fancy PR agency in New York by now to up the ante for them.. maybe we should be asking if one of them might take the baton off of MSF for a year pro bono??
There is further food for thought in relation to this. We can also review MSF's action in the light of those early HIV activists' shock-tactics. It's highly unlikely that they have would even have considered presenting their manifesto in the hands of the articulate, healthy, charmingly engaging Phumeza. Why on earth might you want to present a 1-in-5 XDR-TB success story to the world if you want it to wake up to the collective demise of the other 4? Using Phumeza as a patients' representative is actually a prime example of this current 'engaged' and 'too-polite' activism. Those early activsists would surely never have sent Phumeza - they'd have sent someone who they intended would shock. They would have far more probably sent someone whom the existing treatment hadn't helped, who had been failed by the Organisation whose aims and objectives dictate that this disease should have been as good as eradicated forty years ago: they'd have sent someone who was wasting away in the final stage of the disease. They would have presented this person as an iconic representative for perhaps still as many as 2 million others each year (because they would also have been challenging the official figure of 1.3 million because without proper surveillance all figure are estimates and they would have argued that the real toll is almost certainly higher). They might have given a mask to every delegate to help dramatise the event that little bit further. Of course, they wouldn't have been allowed to do this.. which would have told its own story, which is that such confrontational activism is what's really needed to shake an institution into action. As extraordinary an organization as MSF is, it is reluctant to really rock the boat..
Early on in the HIV campaign there was one particularly potent strapline that the activists used. It was “Silence = Death”. It was an uncompromising concept that TB activists could certainly do worse than bear in mind today rather than emulate the more muted current engaged activism of the HIV lobby. There were other slogans as well – “Action = Life”, and “Ignorance = Fear”. Both could be equally well adopted by TB activists, but, far more importantly, so could that original primal energy that had shifted the initial inertia and fear of HIV. It’s quite probable that these early HIV activists conducted the most successful political campaign in recent history. It’s also a fact that nearly all of them are now dead. The development of ARV drugs that now mean that people living with HIV can expect to live normal lives arrived too late for them: they still arrived, however, in bulk on a timescale that has not been seen in any other area of medicine. Powerful people who are the voice of HIV today simply no longer live under the same sort of cloud as those who are now living with a drug-resistant strain of tuberculosis do. A voice needs to be found for them.
Today’s HIV activism is no longer all about protests and confrontation. ‘Die-ins’ have had their day and so have died out. This is most certainly not yet the case with TB, however, so ‘die-ins’, or something like them may well be exactly what is needed to shake the world a little. Something must be done to properly focus the attention of the world’s media and the G-8 on what is the public health issue of our age and so on the plight of the millions at risk and dying of TB. This, in fact, is exactly what the ambitious challenges set by the World Health Assembly nowdemands of us.
In other words, TB activism needs to step up its game.
Of course there is also the World Health Organisation itself – an institution which is already well known for its institutional inertia – even accused by some of “knowing everything and doing nothing”. Well, it was the WHO which set up this Plan, but it has passed the principle responsibilities on to others to for its implementation The least it can do now is to use some of its considerable muscle to help out.
The WHO does have the power to pass normative international legislation, though it has proved itself to be institutionally reluctant to use it. Perhaps now is the moment for it to step up and demonstrate the leadership that it is demanded of it because there is at least one piece of international legislation that it can seriously consider – one that might help genuinely help support the strained human resource that is going to be required to implement the ambitious targets it has set for the world. (And there may be others as well..)
Each year a steady stream of healthworkers who have trained and qualified in middle- and low-income countries take up positions in higher-income countries, drawn there by higher wages. This phenomenon doesn’t happen by accident: the wealthier countries, guided by their increasingly selectively controlled immigration policies, actively recruit the most talented as well as the less well talented. A 2013 Canadian study has estimated that as much as US$2 billion of human investment in healthworker training has been lost by just nine African countries all of which have heavy burdens of TB. Proportionately, far more than this amount of money was thus saved at a stroke by the high-income countries themselves which, by recruiting in this way, saved themselves their own far higher costs of in-country training.
Such a phenomenon can no longer be accepted as being part and parcel of our globalised world. Such recruitment policies need to be recognised and condemned as being morally indefensible in the light of the TB Emergency. In fact, it should not only be shown as such – it could also be legislated against, and the WHO has the power to do this. It would not be difficult to do: an appropriate ceiling should be determined, and it should be one that is determined openly and equitably so that the usual blocking or phillibustering by the G-8 are not allowed to stymie or stall the negotiations. Such legislation would be seen to be a decisive benchmark moment that demonstrates a will for change within the WHO which is currently invisible. Such a ceiling would set legal limits on the amount of healthworker traffic that is allowed to travel northwards in any year. It has to be accepted that the richer countries would still almost certainly take the cream, but at least they would not continue to steal the milk as well.
Then we might look to the patients and the healthworkers who are struggling to help them recover. Both are frequently identified as suffering from low morale, and both are also frequently blamed for the rise of drug-resistant disease. Both need to be better supported and properly motivated, and far more imagination should be being applied to doing this. When resources are poor, demotivated patients and practitioners amount to a disaster. While we wait for the proper response to the necessary call-to-arms for funding for the Plan, we need to keep a far more intense focus on the coal face of the disease itself, ensuring that the highest possible standards of care are maintained and assuring them that, this time, the cavalry is going to make it.
Luis Figo, the legendary Portuguese ex-footballer, is also the StopTB Partnership’s ‘Goodwill Ambassador’, but his face remains far less visible in the Partnership’s campaigns than it should. His is not the only well-known footballer’s face that could help the cause, however – Figo is, after all, just one in a long line of European Footballers-of-the-Year, and an eleven-strong team of whom should quite easily be recruited to help the cause. Some of these still-living legends are probably as well known in most TB endemic countries as they are in their own ones. Some of their faces are also inconic and instantly recognisable (and some are also African) – Zinadine Zidane, Ronaldo, Ronaldinho, Schevchenko, Kaká, Christiano Ronaldo, Messi, George Weah, Michel Platini, and Ruud Gullit would make some team (even with the great man Pelé himself on the subs bench perhaps given that he was also honourarily given the ballon d'or award). Each one could so easily help out by allowing their faces to be used in an economically effective poster campaign to encourage TB patients to stick to their treatment for the ‘whole match period’, or to help ‘score the goal that will see you cured’ etc,etc. – thus helping patients improve their own self-images whilst reducing the stigma of infection, and helping health workers’ credibility in the process. A series of eye-catching posters could be printed and be on display in every patient waiting area that needed one. Other posters could as equally well be designed to encouraging healthworkers to keep their patients on target. Who knows, one simple photo-shoot session could lead to far more active involvement by some of these individuals in the coming campaign that is now so desperately needed.
Iconic women could equally be asked to join the campaign. Would Oprah Winfrey help out? Might Michelle Obama lend her face to such a campaign, or Syreena Williams - or even the busy Angelina Jolie? Orchestrating such asimple campaign really should not be a huge test of resource.
The WHO has another far tougher task ahead of it however, of stimulating active interest amongst the research community in the development of the new and faster drugs, of the missing point-of-care diagnostics and of the elusive new vaccines. The industry itself has proved itself so far to be reluctant partners in this enterprise, and in any case it is an industry that is hardly renowned for its public-spirit. This doesn’t mean that such attitudes should continue to be accepted without active challenge, however.
In fact, it’s not just TB patients – the whole of medicine is at risk of being held to ransom by what some have called ‘medico-capitalism’, or at least by its excesses. The WHO is far from being untainted by its association with this conglomerate, often seen to suffer from conflicts of interest between its own aims and the commercial objectives of the corporate giants that compose ‘Big Pharma’. The WHO, by designing its new Plan, might just also have instituted its Damascus moment, one when it might demonstrate once and for all exactly whose interests it really serves. Dr Aaron Motsoaledi is the Minister of Health for South Africa; he is also the current elected President of the WHO’s StopTB Partnership. What marks him out from many within the organization is that he is so public in his criticism of the pharmaceutical industry’s stranglehold on the intellectual property rights which price millions out of accessing appropriate medical care – which is, of course, in complete contravention of the new Plan which categorically demands the rights of “access for all’ to TB drugs and diagnostics. He hasn’t exactly minced his words on the subject, having called the industry’s responses to his own government’s attempts to free up access to cheaper generic medicine “genocidal”.
So will the WHO be prepared to get behind the movement that is being promulgated by Dr Motsoaledi? Has it got the courage to stand by the convictions that are inherent in its own Plan: that research MUST be developed, that diagnostics MUST be scaled up rapidly, that vaccines MUST be developed. Well, of course, it must do because these are so imperative to the Plan, it has no choice. These are moral imperatives much more than the industry itself may want them to be merely financial ones. The excessive profit motives that generally underpin the activities of the pharmaceutical industry are simply going to have to be contained or cast aside if the hopes of millions are to be met, and a public movement needs to be set in motion to force this to happen. It must threaten to shame both the WHO and the industry it is so close to if these targets are allowed to slip. The industry itself must be made to realise that not every new drug today needs to be a gold mine for profit for its shareholders.
Dr Motsoaledi himself will also particularly relate to such a sideways reference to mining in relation to TB: he is fond of calling TB the “snake of Africa” with its head in his country's mines. Statistics support his view: epidemiologists suggest that the South African mining industry is responsible for as many as 760,000 incident cases of the disease each year – a third of the region's epidemic and a ninth of the entire global pandemic. His solution to the problem is quite simple meanwhile: he says that if you want to kill a snake you need to stamp on its head.
So something need to be done about this as well, and it also needs to be done fast. 1993 was the year in which the WHO pronounced TB to be a Global Emergency; it was also the year when the scourge of apartheid was dismantled in South Africa. It should have been the year in which the mines were nationalized and the conditions within them begun to be improved because this is what the ANC had been promising its supporters. They bowed, however, to the irresistible pressures of the wealthier nations which threatened to withdraw their investments if they nationalised as they had promosed, and today the conditions in South African mines are as bad as ever. In fact they may even be worse – because according to the records of autopsies that are carried out on dead miners, the number of cases of TB that are found in their cheesy lungs has been increasing significantly during the ANC’s 21 year watch. The South African mining industry, to put it bluntly, is a public health scandal.
Back home with a copy of the new Plan in his hand, Dr Motsoaledi will certainly be strengthened in his efforts to improve this situation in negotiating with his colleagues in the ANC. Effectively, they are now directed by the World Health Assembly to collectively get to grips with their mining industry.
So what could be done to help this particular cause, because it is another one which will be resisted by another massively profitable industry. A similar global campaign could be developed as was waged against the indiscriminate killing or farming of animals for their fur, or the one that was developed against the immoral profit from the ‘blood diamonds’ which were both legally and illegally being exported from troubled countries in Central and West Africa at such huge human cost. It would need to be a public campaign for better working conditions in the mines not just on the streets of South Africa but also on the streets of the European and North American capitals where these mining conglomerates have their headquarters. The fpublic ace of this campaign could be one that uncomfortably considers the human cost of every platinum wedding ring, for instance, as opposed to the simple financial one. A poster of a ring on a beautiful hand with an inset face of a miner, perhaps, with a slogan such as: “Did your partner really cough up that much for your wedding ring?... Because he did…”
The Plan states that“continuing progress beyond 2015 will require intensified actions above and beyond tuberculosis programmes within and outside the health sector”. These simple initiatives described above constitute just a few intensified areas of action but others will be needed. There are surely many more than can be creatively devised and initiated to get the plan kick-started even before 2015 begins – because this is what needs to be happening.
And these sort of things need to start happening RIGHT NOW if anyone has any serious intention that this new Plan is going to succeed….
Part 1 of this analysis too a critical view of the Plan itself, particularly identifying how challenging it is going to be.