With Hepatitis C, whichever signals there may have been, were not detected. With HIV/AIDS before that, some signals may have been detected, but were not acted upon adequately. Likewise with a number of other, recent public health crisis: lack of due diligence seems to be a common denominator.
Why this is so has no simple answers:
Political scientist John W. Kingdon offers a number of insights
into governmental policy making in Agendas,
Alternatives, and Public PolicyJohn W. Kingdon:
Agendas,Alternatives, and Public Policy, 2nd Edition; New
York; 1995: first of all, no one really has the
time for the extraordinary. Ordinary day-to-day chores keeps
politicians and civil servants more than occupied from dawn to
well beyond dusk; politicians with the whole array of topics on
the political agenda; career bureaucrats with the implementation
and administration of existing programs.
To the extent signals are picked up, they are not considered as an unkown in need of extensive investigation; rather as a variant of the already known to be dealt with through incremental, marginal adjustments to current policies.
Secondly, Kingdon also notices that politicians can do little about warnings, if a solution is not attached. And not just any solution, but a solution that is politically viable as well as payable.
However, other factors can be at play, as shall be demonstrated by examples of how HCV has been dealt with so far, and by drawing on the history of HIV/AIDS and the many insights the pandemic has given into an evolving public health crisis. As Randy Shilts, chronicler Randy Shilts: And The Band Played On; New York; 1987of the early AIDS years, once summed it upin the preface to Anne Brockenhuus-Schack & Poul Birch Eriksen: AIDS - mellem linjerne; Frederiksberg; 1988:
Perhaps no single element of the AIDS crisis demonstrates the excruciating problems of business-as-usual policy in times of a medical emergency than the question of AIDS in the blood supply. Since the blood supplies of most Western nations are directly regulated by their federal governments, the problem of blood transmission could have proved the easiest aspect of the epidemic to control. This wasn't something like sexual activity or drug use, arenas which largely defy attempts at regulation. Moreover, the people in charge of the blood industry are usually doctors who, in theory at least, should be making decisions with a modicum of interest in their medical concequenses. Yet, in both North America and Europe, avoidable tragedies of AIDS transmission to hemophiliacs and transfusion recipients were not averted: The system failed and people died as a result.
It did not even get a name of its own until 1989, when the Hepatitis C virus was discovered. Prior to that, it was labelled non-A, non-B Hepatitis, a term to convey that it was a Hepatitis virus, yet different from the known types A and B.
With the identification of HCV, a test to screen blood for the virus was soon developed. With it, HCV got a brief moment in the political limelight, as public health officials and regulators had to decide how to use it: what kind of screening strategies to implement and when to begin.
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As can be seen from how events unfolded in Denmark, it took a lengthy, political decision process before the Danish Board of Health made it mandatory to screen all donated blood for Hepatitis C as of June, 1991. Shortly after HCV was identified in 1989, a few Danish blood banks began screening on a trial basis, and subsequently more and more blood banks wanted to follow suit. In Denmark, blood banks are operated by the public hospitals, who are run by the Regions. However, the Regions were unwilling to commit resources for increased screening - unless they could make the Board of Health make it mandatory. In that case the State would have to reimburse the cost. On their side, the Board was reluctant to require screening, in part because the quality of tests available was not sufficiently high. As the test was improved significantly, the objection became harder to uphold. Change came in early 1991 when the risk of hepatitis C infection was mentioned in a TV programme and followed up by other media. Now the Board advised the Minister to introduce screening of donated blood for hepatitis C, which came into effect by June. An interesting aftereffect followed the decision to screen for HCV. The one thing that really went wrong in the Danish tainted blood affair was to introduce blood screening and heat treatment simultaneously, but with different deadlines. As of October 1985 all medicines derived of blood had to heat treated and as of January 1986 all donor blood had to be screened for HIV. What was not thought through was, what to do with blood donated in the remainder of 1985? The authorities overlooked the intricacies of this transitional arrangement, and the Danish producers saw it as a ‛carte blanche‛ to use up all the plasma they had in stock. At least one Danish haemophiliac was subsequently infected by his Danish made factor concentrate. The investigation that followed showed it had been heat treated, but also it was made from unscreened blood. The trigger being that the heat treatment at the time was not efficient enough. To avoid a repetition with HCV, it had to be demonstrated that lessons had been learned from HIV/AIDS. With heat treatment having improved and also reducing the risk of hepatitis infection significantly, the Board of Health was reluctant to require that all blood products should be based on the screened blood, as it would mean the destruction of valuable raw material and possibly a shortage of blood products. Politicians took a different view. They demanded blood derived medicines to be based only on screened blood with immediate effect, despite revoking unscreened products would cost millions. |
It was believed that the screening introduced in the early 1990's would contain the spread of the virus, and HCV soon faded out of attention again. At the time HCV was seen as a small-scale problem, causing only minor manifestations in relatively few patients, who were believed to clear the infections after the initial symptoms. No one thought about chronic infection, whether chronic infected could pass on the infection or any potential, long term effects.
Medical science has since learned that a large proportion of people, who are infected, develop a chronic infection, and carry the virus for decades without any symptoms. Some of these patients will develop serious life threatening liver diseases, such as cirrhosis and liver cancers.
Increasing scientific knowledge of the virus has led to further insights. We now know that a significant proportion of the infected population contracted the virus decades ago when effective screening and treatment were not available.
Many of these patients contracted the virus via blood transfusions, unsafe injections and other health care exposures with poor infection control practices. They may have been asymptomatic for 30 years or so since infection (the period from which we have data), but now a proportion of them require therapy.
This is one of the reasons, HCV is beginning to make its way back into the political landscape.
As the global impact of HCV is becoming more and more apparant, the World Health Assembly - WHO’s governing body - has since 2010 adopted a number of resolutions. In 2011, July 28 was officially recognized as World Hepatitis Day - to create awareness, strengthen prevention and coordinate a global response. A Global Hepatitis Programme has also been set up within WHO, to set standards and issue guidelines to help countries formulate specific hepatitis policies for prevention and treatment.
As it happens, problems are usually defined, when information and insights are at their scarcest. Common sense dictates the defition to change as new knowledge becomes available. In politics, this may not necessarily be the case, as sticking to one's initial position, no matter how ossified it may be, has become a political virtue in many countries. The politician who dares change his og her mind in public runs a risk of being framed by those, who do not, with accusations of broken promises and must be prepared to invest a fair amount of political capital in the project.
One of the lessons of HIV/AIDS has been that a skewed, initial definition can be very uphill to correct. As HIV/AIDS was first discovered in 1981 among gay men in the USA, it was seen as a gay disease in the West, i.e. of little consequence to the general population. With that belief it took a long time to realize that HIV/AIDS also could be transmitted through the blood and through heterosexual sex, the latter becoming more and more evident across Sub Saharan Africa.
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56 Danes - mostly gay men - were already sick or had died from HIV/AIDS, before Denmark changed policy and began screening for HIV/AIDS. News broke in September, 1985, of an infected blood donor, whose blood had been used for transfusion. The recipients had passed away, because of the disorder requiring the transfusion. Public health officials had known about the case for about a year, but found it too rare to necessitate a policy change. The belief was that Danish blood in general was of high quality, coming from unpaid volunteers. Also there was the question of the cost of screening, which was thought to be better used at other prevention efforts. On learning about the case, the minister, Britta Schall Holberg said: »For me as a politician, there is a significant difference between something that is a hypothesis on a piece of paper, and anything that is an established reality. An actual case makes a completely different reality for citizens,« and ordered screening implemented. |
The definition difficulty for HCV is initially being seen to
cause only minor health problems. The long term, serious
consequences may have been registered in vital statistics, but it
has taken a long time connecting the dots and seeing that HCV was
behind most cirrhosis and hepatocellular carcinomas and indeed
the indication for most liver transplants. Also the chronic
infected have not been followed - as they were believed not to
exist - and as a result good data on how many are infected - and
in need of treatment - are hard to come by.
Another definition problem is that hepatitis has been framed as a problem among injecting drug users. But out of the approximately 150 million individuals living with chronic hepatitis C only some 10 million have gotten it through injecting drug use. The vast majority have contracted the virus via contact with the health system, through blood transfusions, unsafe injections and other health care exposures with poor infection control practices. Still, people may not consider themselves at risk, because they have never injected drugs.
The framing of HCV as a problem among injecting drug users could have another explanation, at least in high income countries. Incidence data - the number of new cases - are likely to show a high proportion of injecting drug users. Prevalence data - the accumulated number of cases - may tell a different story of many without know risk factors.
An important link in the public health chain is the family doctor or the practitioner in the primary health care tier. However, studies over the years have found dissemination of professional information as well as knowledge among the professionals to be somewhat lacking. So HCV may not be the first thing that comes to the doctor‛s mind, if a regular patient presents symptoms that could be caused by a chronic HCV-infection. Neither may the second be to offer a test.
Questions worth asking:
- Do politicians and public health officials saying there is no need for a policy change have a case - or are they protecting their own, previous decisions?
- Can the media on its own correct the early misconception of HCV?
Next: P's of Public Health