The greatest emergency of all PERSONAL VIEW Seye Abimbola
I
once read of a man, Belding Scribner, in my favourite medical school textbook, the Oxford Handbook of Clinical Medicine. He invented the Scribner shunt. Like every inventor, Scribner, a US physician, saw a problem in need of a solution. Patients with chronic renal failure could have dialysis for just five to seven times during a painful operation; damage to blood vessels would make further treatments impossible. Scribner was inspired to invent the shunt, haunted by a patient who had made a startling recovery through dialysis but died soon after. Allowing haemodialysis to be repeated as often as needed, the shunt transformed chronic renal failure from a disease that was 100% fatal to one that was 90% survivable. Scribner could have become a multimillionaire but instead gave his invention away and by so doing saved millions of lives. What would you think of a multimillionaire, say an inventor like Belding Scribner, if you knew that the real cost of his wealth is the lives of his fellow humans? Millions of people, especially in developing countries, are being denied access to lifesaving drugs and health technologies in the brazen name of the World Trade Organisation’s trade related aspects of intellectual property rights agreement (TRIPS). TRIPS, a series of aggressive, US-style patent provisions, ensures that for the first 20 years of production of, say, a new drug the manufacturer is granted a monopoly over it. No generic equivalent can come on to the market, denying poor patients cheaper alternatives. Free from competition, the company keeps the price of the drug high during the protection period. More than 60% of the world’s HIV infected people live in sub-Saharan Africa. The standard antiretroviral treatment costs about $10 000 (£5000; €6800) a year, whereas the generic alternative might cost as little as $300 a year. Most sub-Saharan Africans live on less than $1 a day. Second line antiretrovirals are even more 158
A sleeping sickness ward: new drugs for tropical diseases are rare and often don’t result from drug firm research
costly. Access to artemisinin based combination treatments for falciparum malaria is similar, so too the drugs for multidrug resistant tuberculosis. Millions are dying in this quiet carnage, and you wonder why it is not making the headlines. Is this not reminiscent of how the world kept silent as thousands died in Rwanda? The usual reason for granting patent monopolies is that excess revenue is spent on research for new drugs. On the contrary, hardly any drug companies spend more than 15% of annual revenue on research. The rest goes to advertising, marketing, lobbying, and so on. Research into diseases found in poor countries has always been insufficient. New drugs for the treatment of tropical diseases are rare and often don’t result from drug industry research. What we need is a paradigm shift in the organising, promoting, and financing of research and innovation to ensure intercontinental equity in research priorities. The commitment of governments and civil society is crucial, and the issue must be put on the agenda of the World Health Organization, Unicef, UNAIDS, and the United Nations’ general assembly. A new UN agency may even be worth while—say, the Global Fund for Health Research. Run by an independent board of trustees, with scientists, economists, and politicians from developed and developing countries in equal numbers, it would have a global remit to fund medical research and reward innovations. Every country would contribute 2-3% of its gross domestic product to the fund. A fifth of the annual budgets of the US National Institutes of Health, the UK Medical Research Council, and similar organisations in the other G8 wealthiest countries and the European Union would be given to the fund. Innovators would be rewarded in the form of an award, much greater in prestige than the Lasker award, which Belding Scribner won for his invention, or even the Nobel prize. The prize might even be named the Belding
SVEN TORFINN/PANOS
views & REVIEWS
Scribner award for medical innovation. Outstanding innovations, like a definitive cure for AIDS or a malaria vaccine, would attract big monetary prizes. Incremental benefit would be at the centre of the award’s criteria for consideration. Prize payments would be made over the first five to 20 years of sale of the product. Generic drug companies would be allowed access to the intellectual property, and a competitive market would ensure wide distribution at a low price. Innovations that don’t win the award may continue to be patented. Only research that is based in universities and similar institutions would attract grants from the Global Fund for Health Research, which would be allocated according to the number of people potentially served by the results of the research. Funding priorities would be global infectious diseases and neglected diseases that primarily affect poor people in developing countries. Because most money for research currently goes to large universities in Europe and North America, the new fund would also give at least 20% of its funds entirely to research in universities in developing countries. With the two streams—research grants and the Scribner award—in full operation, we would be able to prioritise research that matches need and make the best use of whatever knowledge we acquire, rather than hoarding it and promoting monopoly. We cannot allow the cruel, cave age emotion of greed to run our lives. Inequitable access to lifesaving drugs and health technologies is a great global emergency. The whole world—all of us—must rise to this all important challenge. Seye Abimbola is a preregistration house officer, Wesley Guild Hospital, Ilesha, Nigeria, and a former BMJ Clegg scholar
[email protected]. This article is an edited version of a winning essay in the 2007 Global Forum for Health Research/ Lancet essay competition. A longer version is on bmj.com BMJ | 19 january 2008 | Volume 336
VIEWS & REVIEWS
“Unfortunately, people aren’t cars.” Des Spence on why screening is not the one way street of benefit that the media and Gordon Brown believe, p 160
review of the week
The sleeping giant Overshadowed by AIDS, tuberculosis, and malaria, the tropical disease sleeping sickness has been wrongly neglected, according to a new book, writes Brian Greenwood An unintended consequence of the effort to control AIDS, tuberculosis, and malaria has been relative neglect of other major tropical infectious diseases, such as schistosomiasis, leishmaniasis, and trypanosomiasis. Together these infections are responsible for nearly as many deaths as malaria. The efforts of advocacy groups and media attention have resulted in widespread recognition among the public of AIDS, tuberculosis, and malaria, but there is little awareness of the continuing presence of major parasitic infections such as African trypanosomiasis. Trypanosome infections in humans are called sleeping sickness, because in the terminal phases of the infection patients often become comatose, sleeping all the time. However, in earlier phases of the disease the patient may have many other neurological signs and mood disturbances. Trypanosome infections are still important in large parts of sub-Saharan Africa, because of the direct effect on people of the West African (Gambian) or East African (Rhodesian) forms of sleeping sickness, both of which are 100% fatal unless treated effectively, and because trypanosome infections in cattle reduce agricultural productivity and hence contribute to poverty and susceptibility to other diseases. This message comes over clearly in The Fatal Sleep. The author looks after patients with neurological diseases in Glasgow while also having close links through his laboratory work with veterinarians in Glasgow and Kenya whose primary interest is sleeping sickness. Kennedy’s book about trypanosomiasis covers its key features in a way that makes it accessible to a general audience, mixing chapters of autobiography, travelogue, and biology. Although this format makes it interesting to general readers with little knowledge of Africa or trypanosomiasis, it has the disadvantage that parts of the book are rather superficial for readers who have some knowledge of either. For example, the first chapter contains a detailed description of the author’s medical school elective spent in Zambia; and some of his later descriptions of visits to Kenya and Uganda are examples of popular travel writing rather than popular science. His experience of research in east Africa comes primarily from short term visits; and some of his descriptions of Africa, such as those of driving on pot holed roads, are more likely to be of interest to tourists or short term visiBMJ | 19 JANUARY 2008 | Volume 336
tors than to anyone with more experience of working in Africa, for whom pot holed roads are likely to be a part of everyday life. But Kennedy has provided a comprehensive account of the history of sleeping sickness, the biology of the trypanosome and of its tsetse fly vector, and how the disease affects humans and animals. These accounts are clear, comprehensive, and free of jargon. Treatment of human and animal trypanosomiasis, an area in which the author’s research group at Glasgow has made important contributions, is covered well. The fact that the mainstay of treatment of advanced sleeping sickness remains melarsoprol, which kills one in 20 of the patients who receive it, is forcibly made and illustrates the neglected development of new treatments for this condition, in humans or animals. Fortunately, some progress in this area has been made recently. Has Kennedy missed any important scientific issues? Vaccination, not included in the index, might have been given more attention, as the general reader is likely to be familiar with recent major efforts to develop vaccines for malaria and HIV and may wonder why this is not the case for trypanosomiasis. More importantly, I do not think that the book conveys to the general reader the magnitude of the problem of sleeping sickness in humans in the first half of the 20th century, when epidemics of the disease had a similar impact as the current epidemic of HIV, or of more recent epidemics in war torn countries such as Angola, the Democratic Republic of the Congo, and Sudan. Describing a few patients in a Kenyan hospital and recounting the need to find a new research site in Uganda because of a lack of patients for research in Kenya will not impress readers who are aware of the scale of the problem of HIV, malaria, and tuberculosis in Africa. The advocacy component of the book would have been stronger for a description of one of these recent epidemics and its devastating effects on the community in which it occurred. Kennedy is to be congratulated on writing a book for a general audience about an important but neglected tropical disease, and he has generously offered half his royalties to charities working to alleviate its results. Brian Greenwood is professor of tropical medicine, London School of Hygiene and Tropical Medicine
[email protected]
The Fatal Sleep Peter Kennedy Luath Press, £20, pp 264 ISBN 978 1905222674 Rating:
****
The mainstay of treatment of advanced sleeping sickness remains melarsoprol, which kills 1 in 20 patients 159
VIEWS & REVIEWS
Ladas and MOTs I once owned a Soviet Lada Riva. The mats didn’t fit, it skidded at 10 mph going round corners, and, for a car built for the Siberian wastes, it never started in the cold. One day an engine fire blazed my Lada to Valhalla, despite regular servicing and an MOT test. I was glad. Gordon Brown, our new politburo boss, has promised a revolution of American-style screening “check ups” (BMJ 2008;336:62-3���������������������������������� ). Should we ��������������������� recalcitrant��������� general practitioners resist this centralised diktat, then private sector workers are on standby to be bused across our picket lines. For screening is a simply a good idea, isn’t it? The popular media have long bemoaned the lack of screening in the United Kingdom. So, seduced by this populist health initiative, Mr Brown has seized the headlines. Unfortunately, people aren’t cars. Screening is based on a number of established criteria: specificity, sensitivity, acceptability, ���������������������������������������� reliability,���������������������������� and, above all, that early diagnosis makes some difference to outcome. The screening announced by Gordon Brown for diabetes, aneurysms, kidney disease, and the rest simply does not meet these criteria. Even for established screening programmes, the benefits over risks are contested. Consider
FROM THE FRONTLINE Des Spence
cervical cancer as an example: it is necessary to screen 1000 women for 35 years to prevent one death—which means, therefore, that 999 women will receive no benefit from screening. Worse, some 40% may have a positive smear and 5% may have needless invasive treatment (BMJ 2003;326:901���������������������������������������� ). Screening is not the simple, one way street of benefit that the media suggested, but an anarchic highway full of dangerous machinery and meandering livestock. The only certainties of screening are uncertainty and anxiety. The inverse care effect will, as ever, see the predictable, miserable lines of low risk, worried well clogging up NHS services. The high risk, unworried sick will continue happily to ignore our screening initiatives. MOT “check-ups” are stupid and nothing but a medical charade. If Mr Brown is serious about improving health, might I suggest some public health medicine: limit personal car use, build cycle paths, tax processed food, subside fresh foods, and re-establish a food culture. The mats don’t fit on these plans, which will spin off at the first corner, burst into flames (I hope), and go to hell. Des Spence is a general practitioner, Glasgow
[email protected] See OBSERVATIONS on p 123
Paying for the view DRUG TALES AND OTHER STORIES Ike Iheanacho
160
It’s a wonder they can talk at all, given their mouths are so stuffed with industry gold. Somehow, though, they manage it, and often to great effect. Opinion leaders are megastars of the medical world. Groomed, pampered, and promoted by drug companies, they are the role models whose views are to be taken seriously. Such individuals are part of an elaborate game that supposedly ensures “transparency” about the relationships between doctors and their industry paymasters. The declarations of competing interests so beloved by journal editors, academic boards, and advisory bodies are a key part of this charade. And then there are the statements about potential conflicts made at conferences and other meetings, and the ostentatious offers to leave the room when a personal interest might unduly sway a discussion. These rituals are all well and good but are at best a sop and at worst
represent a cover-up. For example, monetary value of industry’s sweeteners for opinion leaders is often missing from even the most florid “declarations.” What’s more, the game carefully excludes patients and the wider population—the people who really deserve to know who might be pulling a doctor’s strings. The excuses routinely trotted out to avoid such exposure are risible. “None of these personal interests affects my clinical judgment” (How would you know?). “Patients have no interest in or understanding of the issues involved” (How would you know?). “Scrutiny by my peers is more than enough” (Who are you kidding?). “I have relationships with several companies and this ensures I’m unbiased” (Have you heard yourself?). It is time to do away with these poor evasions. Achieving this will be difficult and requires radical solutions. One such solution would involve taking a lead from another group of stars.
Through the badges and logos on their livery and cars, grand prix drivers offer clear public messages about their commercial ties and allegiances. Similarly, doctors with personal drug company interests should be expected to have these emblazoned prominently on their clothes, so giving their patients and, indeed, other healthcare professionals valuable insights. Presented with such graphical information, some patients won’t notice or be bothered that their doctor is being rewarded by drug companies. Others might interpret this as confirmation of a professional’s expertise and standing. But, crucially, all would be better placed to consider treatment advice in context. Anyway, if opinion leaders insist on being talking billboards for the industry, they might as well look the part. Ike Iheanacho is editor, Drug and Therapeutics Bulletin
[email protected] BMJ | 19 JANUARY 2008 | Volume 336
VIEWS & REVIEWS
An inconvenient truth Christa Wolf was the a state (assuming BETWEEN most famous East he would not be THE LINES German writer, at immortal)—that is, if least in the West. Her his upbringing were Theodore Dalrymple reputation suffered of a perfection of somewhat after the which Rousseau and Berlin Wall came Wolf might approve. down from the revThe answer seems to elation that she had be that he wouldn’t informed for the live long enough to Stasi, though only get cancer. for a short time when Wolf wonders she was young. She whether there “is a was widely regarded connection between as an equivocal disthe widespread inasident, half-darling, bility to handle the half-opponent of the truth of a serious illregime. One can’t ness and our deeply Wolf says that “many help thinking of the ingrained habit of doctors who avoid the truth position of medical deceiving ourselves, when dealing with patients directors of N H S and letting ourselves are behaving normally, trusts. be deceived, about complying with the norms, Medicine has the role we are playconforming to their long been an intering and the society society”—which, of course, est of Christa Wolf’s. we live in?” Here she feels, is all wrong The heroine of her one cannot help most famous book, but remember T The Quest for Christa T, dies from leuS Eliot’s famous line, that humankind kaemia. In 1984 Wolf wrote an essay cannot bear very much reality. entitled “Illness and Love Deprivation: Wolf says that “many doctors who Questions for Psychosomatic Mediavoid the truth when dealing with cine.” And in 1991 she gave a lecture patients are behaving normally, comto the German Cancer Society entitled plying with the norms, conforming to Cancer and Society, in which she wontheir society”—which, of course, she dered whether there was a cancer perfeels, is all wrong. She seems to be an sonality that, because it was inhibited ally of Mr Gradgrind on this question: by its social upbringing from expressfacts, and facts alone, are what are ing aggression outwardly, turned its needed in life. aggression inwards in the form of canI think things are rather more comcer. She quoted the Swiss author Fritz plex, which is no doubt why mistakes Zorn, who, like many a memoirist of are so often made. Where there is a cancer (or other fatal disease) from the need for judgment, there is always privileged sector of society whom I the possibility of error. I remember have read, asked the question when he that when my mother had cancer, she contracted the disease, “Why me?” His demanded that after her operation she answer was as follows: should be told everything. In fact, she “The harm that is caused by faulty had a poor prognosis (the likelihood upbringing can be so great that in its of recurrence and death within a year most extreme forms it can manifest was great) and the surgeon, sizing her itself as a neurotically determined illup, advised against a full disclosure of ness, such as cancer, as now seems to the facts. She lived another 20 years, be the case with me.” and I have little doubt that the surgeon This is what one might call the was absolutely right and humane in his Rousseau theory of cancer: that in a advice, which was to mislead, if not virtuous state of nature, man would actually to deceive, her: or, in Christa never get it. This raises the question Wolf’s parlance, to behave normally. of what man would die from in such Theodore Dalrymple is a writer and retired doctor BMJ | 19 JANUARY 2008 | Volume 336
Medical classics A Cure for Serpents By Alberto Denti di Pirajno First published in 1952 This charming book by Alberto Denti (who later became the Duke of Pirajno), an Italian who went to north Africa as a doctor in 1924 and stayed for 18 years, is a collection of stories, mostly about his patients. He later worked as an administrator and eventually became the governor of Tripoli, handing the town to General Montgomery in 1943. In 1924 Libya was an Italian colony, and Dr Denti was attached to a military force led by the Duke of Aosta. His duties included the care of soldiers’ families at a remote coastal station east of Tripoli. Inevitably his services were also sought by the local population, whose medicine consisted of medieval remedies he describes as “fireballs, scarifications, and blood letting.” He notes that with their archaic medicine these people had never developed resistance to many of his drugs, and it is interesting to learn of the spectacular results he achieved with remedies that are now obsolete, such as bismuth injections for advanced syphilis. A couple of injections of this would so improve the patient’s symptoms that it was only with difficulty that they could be persuaded that they were not cured and should continue with the treatment. In one story Dr Denti is called urgently to see the daughter of the chieftain of a local tribe. He rides across the desert to a Bedouin encampment, where he finds a young woman apparently dying of typhoid. After injecting a protein solution he and the parents wait an agonising 18 hours for the crisis of the illness, when they will learn whether the treatment will be successful. It is, and Dr Denti is rewarded with a handsome gift of camels (would we be allowed to accept such a gift these days?) and is later asked to approve the girl’s prospective husband. Dr Denti has a real affection for the local people and a great respect for north African cultures: he learns Arabic, masters the technique of eating only with the right hand, and patiently accepts the numerous cups of tea proffered in accordance with local etiquette. Despite their appearance he appreciates the nobility of aristocratic Tuareg tribesmen, who wash with sand and dress in dirty, louse infested rags. Many of his patients’ complaints are predictably familiar; and the book contains lessons for our own increasingly multicultural practices. Dr Denti respects his patients and their culture but is also shrewdly objective in dealing with them and their illnesses. He reminds us that in the Muslim world the physician, although respected, is regarded as God’s instrument, and if the patient recovers it is through the will of Allah. Christopher Timmis is a general practitioner, Pinner, London
[email protected] 161
