The silent pandemic. Tackling hepatitis C with policy innovation


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In order to investigate the extent of the health challenge posed by HCV, the Economist Intelligence Unit, on behalf of Janssen, conducted 16 in-depth interviews with experts, including global and national health officials, activists, researchers and medical personnel, as well as extensive desk research.

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The silent pandemic. Tackling hepatitis C with policy innovation

  1. 1. French efforts to address the hepatitis C challenge The French public may be forgiven for feeling confused about how well the country is dealing with hepatitis C (HCV). In November 2012 the first Euro Hepatitis Index – issued by Health Consumer Powerhouse, a provider of comparative national health-related data – ranked France first in hepatitis care, giving it 872 out of a possible 1,000 points. However, in March 2013 SOS Hépatites, a French patient organisation, released a survey showing that 80% of people considered themselves ill-informed about the condition, and although one-third of people believed that they had engaged in behaviour that could have exposed them to the virus, a majority of them had never been tested for it. The index and the survey simply highlight different aspects of France’s battle with the disease. On the one hand, the country has been a clear leader in this field for nearly two decades. On the other hand, as the Hepatitis Index report itself noted, substantial issues remain. Of the roughly 220,000 people in France suspected of having HCV, around 90,000 remain undiagnosed and a similar number untreated. These results are not for want of effort. Rather, the French experience with combatting hepatitis C reveals some of the difficulties many countries are likely to face as they seek to do the same. SUPPORTED BY Before identification of the virus in 1989, transmission most frequently occurred within the health system through infected blood and contaminated equipment. Although still a factor in many developing countries, in the developed world – including France – such transmission has largely ceased. Here, HCV is now spread predominantly through needle- sharing by people who inject drugs. Given the extended period before symptoms appear, however, developed countries may still have a large number of people in the general population who were infected before 1989 but are unaware of their condition. The hepatitis C virus (HCV) is spread largely through blood-to-blood contact. In 15-30% of cases the body’s natural defences can eliminate the disease, but the rest of those infected develop chronic HCV. For most, this initially has no readily discernible symptoms, a situation that can last for many years. Eventually, though, about 60-70% of those with HCV develop chronic liver disease. A minority – estimated at 20-30%, although for people infected when younger and healthier it can be as low as 10% – develop cirrhosis of the liver, which typically appears two or three decades after initial infection. These patients also have a higher than normal risk of developing hepatocellular carcinoma, the most common type of liver cancer. Hepatitis C: A brief description French efforts to address the hepatitis C challenge © The Economist Intelligence Unit Limited 2014
  2. 2. 2 © The Economist Intelligence Unit Limited 2014 French efforts to address the hepatitis C challenge Twenty years of effort The hepatitis C virus was isolated only in 1989, and it took until 1991 to devise a test. The French then reacted quickly. In 1992 a report commissioned by the government signalled that the disease was a serious public health issue.1 In 1994, to better understand the scope of the challenge, the state conducted a national survey, which estimated HCV prevalence in the general population at slightly above 1%. In 1996 it established a network of 31 reference centres in hospitals to provide specialist care. In 1999 the Ministry of Health launched an ambitious three-year national master plan which aimed, among other things, to test 75% of the population and treat 80% of those found with the condition. The plan fell well short: as late as 2005, for example, only 16% of those identified as carrying the disease had been treated. However, that figure was still one-third higher than the treatment rates of any other European country, and more than twice the average.2 A follow-up plan for the period 2002 to 2005 sought to carry on the work while also addressing hepatitis B. Its objectives included better prevention, especially among the population that had become the main source of new incidence, such as people who inject drugs (PWIDs); wider screening; spreading knowledge about the disease in the general population and among non-specialist medical professionals; and increased research on the virus. Again, the goals were set high – identification of 100% of infected people and a 30% drop in mortality from HCV – and again, the results were less so. A 2004 national survey of prevalence carried out under the plan found that in the general population only 57% of those with HCV were aware of their condition. The plan was not renewed on completion, but evidence that both hepatitis B and C remained significant problems – causing about 4,000 deaths annually in France – and the continued low proportion of cases discovered led to the adoption of a plan covering the period 2009-12. This plan, although having very similar general aims to the previous one, largely avoided any new quantitative goals for HCV other than raising the number of those aware of being HCV-antibody positive to 80%. It took no steps to measure this outcome, however, and most estimates still have it falling short. Like the 2002-05 plan, its successor increasingly focused on marginal populations, with those in prison, along with drug users, becoming a specific area of concern. This plan expired in 2012, and no further scheme has been announced. Strengths and weaknesses France’s efforts to combat hepatitis C have achieved undeniable results, which should not be underestimated just because they do not measure up to perhaps overly optimistic goals. In 2001, 670 people in France died solely from complications of HCV, and in 2,163 deaths it was a contributing factor, according to the Centre d’épidémiologie sur les causes médicales de décès (CépiDc, the French centre for the study of the medical causes of death). By 2010 these figures had dropped to 520 and 1,949 respectively, even as the average age of those affected by HCV – and therefore the probability of potentially fatal end-stage conditions – had increased.
  3. 3. 3© The Economist Intelligence Unit Limited 2014 French efforts to address the hepatitis C challenge Similarly, prevalence in the general population seems to be dropping. The proportion of those aged 20 to 59 with anti-HCV antibodies present in their blood fell from 1.05% in 1994 to 0.71% in 2004, the latest year for which national figures are available. The figure for all adults below the age of 80 in 2004 was 0.84%. Over the same decade, the proportion of those with HCV who were aware of their condition rose from 24% to 57%. A lack of data makes it hard to judge progress on prevalence since then. Overall, especially compared with other countries, France’s efforts to date have been “very effective”, according to Dr Jean-Michel Pawlotsky, the director of France’s National Reference Centre for Viral Hepatitis B, C and D. Similarly, Dr Pascal Melin, the president of SOS Hépatites, although in general more critical of government policy, notes that “we have been at the head of the train and the first in Europe to do a lot”. The biggest success, according to both, is the provision of treatment. According to Dr Pawlotsky, “anyone who needs treatment can have access to it”. Between 2004 and 2010 France had the highest treatment rates in Europe, although even at the end of that period only about 6.7% of those infected were being treated each year. Published data on those treated since are as yet unavailable, but the figures are likely to have risen with the introduction of new medication. Meanwhile, the Euro Hepatitis Index, citing data provided by national health services, ranks French medical outcomes on hepatitis the highest in Europe. Dr Pawlotsky’s sense is that “we have treated a large proportion [of those with HCV] and cured all the ‘easy to cure’ patients”. Others see things slightly differently. Although noting that France led its neighbours in this area, a public statement issued in January 2013 by four French experts – including Dr Melin – estimated that only 51,000 patients had received treatment, a minority of those diagnosed, even though cure rates are currently around 80%. The disparity between the two views is partly explained by the complexities of current medication, especially for PWIDs. Existing therapies are physically and psychologically too difficult for many in this category to complete the course of treatment, which can last 48 weeks. Looking ahead, the French healthcare system faces strategic choices if it is to build on its strong treatment record. The first choice – by no means unique to the country – is whether to push for more treatment right away or to await the arrival of new drugs which promise, in the near future, results at least as good as those achieved with existing drugs, but with fewer side effects and taken over shorter periods of time. Dr Melin and Dr Pawlotsky represent the two sides of the debate. The former calls it scandalous that patients and practitioners are waiting: “If you have patients with a certain problem and 80% can be cured, you don’t say ‘we can wait a year’.” Dr Pawlotsky counters that, except for emergency cases, “the majority can wait for a year until new drugs are on the market. If I were a patient, and given a choice of 12 versus 48 weeks, I would wait,” especially given the difficult side effects. This, by its nature, is a temporary issue. Of more long-term relevance is the choice of care provider charged with administering the HCV treatment. The last action plan was supposed to give more
  4. 4. 4 © The Economist Intelligence Unit Limited 2014 French efforts to address the hepatitis C challenge responsibility to general practitioners, or at least to general hepatologists, which would be cheaper and would also ensure the closer involvement of these medical professionals. They are essential for effective screening, but they currently do not test for HCV systematically, according to Dr Melin, especially among those who were exposed to the disease decades earlier. The advent of drugs which still require specialist expertise to deliver and monitor prevented this shift. Now Dr Melin and his colleagues have complained publicly that the limited number of experts is restricting the availability of medication in practice. According to the Euro Hepatitis Index, France is less effective than some other countries at prevention. This is partly a question of which disease pathways one considers. Dr Pawlotsky points out that for the main vectors of the past, “transmission in blood transfusion is close to zero and medical and surgical procedures are well controlled. You can always improve, but prevention in France is very good.” The data back him up. Already by 2003, the risk of infection with hepatitis C from a blood transfusion had fallen to one in ten million, or one new case every four years in France. Similarly, a 2010 study of haemodialysis patients found that infections through that route had probably fallen to zero. The result has been an ageing in the population of those affected by hepatitis C, as fewer new cases occur. Those new cases now tend to occur in populations which are difficult to target, notably PWIDs. Dr Melin believes that the authorities are not doing enough to reach these individuals. For example, while needle-exchange programmes are available in certain large urban centres, they are not allowed in French prisons, where HCV prevalence is 12% among women and 5% among men – well above the national figures. The government’s own evaluation of the 2009-12 master plan tends to agree.5 It states: “The plan did not sufficiently promote information strategies for drug users by their peers, in particular those taking place closest to the most marginalised users.” As for prisons, it added that while treatment rates – roughly 50% of those diagnosed – were good, prevention arrangements remained insufficient. Another commonly cited relative weakness in French efforts to combat hepatitis C is screening. The health system’s reliance on a risk-based approach here allows it, in Dr Pawlotsky’s words, “to find what is easy to find”, but not to go much further. Current arrangements are becoming less effective. Although the numbers screened have increased over the years, the proportion of those testing positive has dipped. Meanwhile, even though total HCV-related deaths have dropped, the number of liver cancer deaths secondary to the condition has been rising steadily, according to data from the Global Burden of Disease project of the World Health Organisation (WHO). Complications are becoming more common, as those infected before the discovery of the virus increasingly experience its later stages. Dr Melin accordingly favours universal screening for HCV, as the French already do for HIV and the Americans have begun to recommend, at least among those born before 1965. A final problem hampering France’s efforts is a surprising lack of data. Although the plans have all been supported by substantial research into how HCV is affecting the population, certain information is either dated – the last national survey was in 2004 – or simply unavailable. For questions such as overall prevalence, although 220,000 infected is the typical estimate, the survey from which the figure is derived actually gives a 95% probability range of 168,000 to 296,000. In other words, the current
  5. 5. 5© The Economist Intelligence Unit Limited 2014 French efforts to address the hepatitis C challenge estimate of around 90,000 undiagnosed cases may be off by tens of thousands. The official evaluation of the latest master plan notes that, despite much research in the field, existing public health surveillance does not produce certain basic information – including changing figures for prevalence, incidence, the percentage of those affected being screened, or how identified cases are managed – that is essential for weighing policy effectiveness. Broader cost of disease studies looking at the impact of HCV on society as a whole are also absent in France, even though they exist for a number of other countries. Lessons learned The notable progress of the French health system and its very high relative success rate in dealing with hepatitis C results ultimately from the government taking a lead where those in other countries have not. As Dr Pawlotsky notes, the strength of the French response has come from “deciding politically that you have to screen and give access to therapy. This has been done only in France and Scotland because there is political vision. The lesson of the French experience is that, if you decide to tackle the problem and allocate resources to it, you can.” How the country’s health system has chosen to tackle HCV, though, also shows the limits of an approach which emphasises risk-based screening and treatment. The former catches the “easier to find” cases, but with an increasing proportion of those who acquired the disease before 1989 likely to develop complications in the near future, and with many not aware or not remembering that they were exposed to risk decades ago, health authorities need to consider casting a wider net. As Dr Pawlotsky puts it: “Great treatments are useless without patients to treat.” Moreover, looking to the future, prevention is even more important than treatment. Dr Melin believes that strong emphasis on the latter has been used as an excuse to pay insufficient attention to the former. The future of French efforts to combat HCV is currently unclear. The authorities have so far failed to announce a new national plan, and Dr Melin understands that, rather than being tackled as a problem in its own right, the treatment of hepatitis C might instead be subsumed under a prospective master plan to treat the problems of drug addiction. He believes that this would be a mistake, as does Dr Pawlotsky, who says: “We should have another plan. Not having one would mean that we are giving up. The situation for HCV is changing with all these new therapies coming, and France, having identified the majority of patients, now has to face those difficult to treat.” The problem will be money, and therefore political will. This may be the biggest danger. The decision to respond aggressively to the HCV threat was not taken in a vacuum. In the early 1990s news of France’s HIV-tainted blood scandal broke just as the authorities were realising that they had no knowledge of how widely hepatitis C had spread among the general population through the health system. Now, notes Dr Melin, there has been “an evolution of the HCV population from transfusion patients to those infected through drug use”, which has made politicians less interested in the disease. How the French authorities respond to this change will define whether the country remains a leader in addressing the challenge of hepatitis C. 1 Max Micoud, ed., Rapport sur l’état de l’hépatite C en France, 1992. 2 B Lettmeier et al, “Market uptake of new antiviral drugs for the treatment of hepatitis C”, Journal of Hepatology, 2008. 4 Dominique Larrey et al, “Guérison de l’hépatite C: la France est en tête, mais elle peut et doit mieux faire!”, Huffington Post (French edition), http:// www.huffingtonpost. fr/dominique-larrey/ traitement-hepatite-c- france_b_2477378.html 3 Homie Razavi, “HCV treatment rate in select European countries, 2004- 2010,” 48th International Liver Congress, Amsterdam abstract 51, 2013. 5 Haut Conseil de la santé publique, “Évaluation du Plan national de lutte contre les hépatites B et C 2009- 2012”, April 2013.