Clinical review of the impacts of hepatitis C

13. Term of Reference 5

Provide a view on the relativity of the hepatitis C infection impacts among chronic and advanced HCV individuals.

13.1 Methods

The following views constitute a consensus of the Group. They are based on the evidence, as above, and their own professional or personal experience as patients, patient representatives, nurse/ psychologist/physician attendants of Hepatitis C patients and national experts in clinical aspects of Hepatitis C.

13.2 Conclusions

13.2.1 Overall Contextual Conclusions Encompassing those from Terms of Reference 2-4 as Above

• In many instances, people with advanced hepatitis C will have their lives shortened by the impact of infection; while certain people without advanced hepatitis C may have their lives shortened by the impact of infection (for example, due to hepatitis C being a factor in a cycle of depression and addictions), the overall impact of hepatitis C on mortality among this group as a whole (i.e. at a population level) is not appreciable. That said, survival among infected people with underlying bleeding disorders and other serious chronic conditions is compromised when compared with survival among the general population.
• For people with hepatitis C, regardless of whether or not they have advanced hepatitis C, the impact on their mental health and way of life, often over decades, has been profound. The mental health effects – especially those manifesting themselves in depression, anxiety and stress – are incontrovertible; such certainty stems from comprehensive and high quality evidence from the scientific literature, supported by illuminating testimonials from a random sample of SIBSS members.
• Just as critical are the notable losses sustained by most infected individuals. Such losses relate to relationships with family and friends, employment and financial security, and stem from many factors; these include i) the stigma of hepatitis C because of its association with injecting drug use and the fear of transmission to others, ii) the loss of ambition and self-esteem from knowing one has a life-threatening, generally previously untreatable, condition, iii) the debilitating effects of previous antiviral treatment and iv) the constant, long standing, reminder through news bulletins that one is the victim of an NHS “scandal and disaster”, the scale and intensity of which is unprecedented.
• Any physical impacts of hepatitis C on people without advanced hepatitis C are difficult to characterise and quantify, not least because the underlying bleeding disorders and chronic disease associated with this group, and the mental health effects as described above, could themselves influence, for example, energy levels and cognitive ability. Nevertheless, what is undisputed is the self-perception that hepatitis C was, is, or might have been the cause of such difficulties.
• While the hepatitis C impacts among those without advanced disease, generally, are not life threatening, they are life changing; and such life changing effects have not just been confined to the affected person. The effects also apply to many of their spouses/partners and children and parents.

13.2.2 Conclusions Concerning the Relative Impacts of Hepatitis C

With respect to the relativity of hepatitis C impacts associated with chronic infection and advanced hepatitis C, the consensus of the Group is as follows:

• The impacts of hepatitis C on the great majority of SIBSS beneficiaries, regardless of their chronic hepatitis C/advanced hepatitis C status, have been very considerable and the characteristics and intensity of these impacts have varied among people, and within the same person, over long periods of time.
• While the impacts of hepatitis C, generally, are greater among people with advanced hepatitis C, there are instances of people with such advanced disease who have been less affected than those with chronic hepatitis C; in other words, there is a considerable overlap in terms of impact – one which reflects the different ways people manage adversity on account of differences in their underlying mental and physical health and their living circumstances, particularly those relating to financial and human (family and friends) resources.
• The impacts of hepatitis C on many spouses or partners of those living and widows/ widowers/civil and long-term partners of those deceased are very substantial, regardless of chronic hepatitis C/advanced hepatitis C status.
• Sharing a life with an infected person with chronic hepatitis C means sharing the fallout – particularly in the context of that fallout relating to mental ill health and material loss.
• Accordingly, assessing the relativity of the impacts of hepatitis C among those with and without advanced hepatitis C is complex and challenging. The Clinical Review of the Impacts of Hepatitis C Group consider that this complexity is, at present, not factored into the decision making around awards, but should be.

• Key Recommendation
  The Group recognises that there is a gap between the awards made to those with and without advanced hepatitis C, but is of the view that the extent of the difference between the current awards – a difference which was accentuated by the Financial Review Group recently - is inconsistent with the difference between the cumulative past (and future) lifetime impacts of hepatitis C experienced by those with and without advanced hepatitis C. The Group considers that this inconsistency is unfair and inappropriate, and should be addressed commensurately.

• Key Recommendation
  The Group recommends, for the purposes of consistency and fairness, that any new arrangements for the Chronic HCV category of individuals should incorporate the same approach to widows, widowers and partners as that currently in operation for those belonging to the Advanced HCV category.

• Key Recommendation
  In circumstances where an individual with Chronic HCV dies as a consequence of HCV, their widow, widower or partner may apply to SIBSS for consideration of an advanced HCV award for widows, widowers or partners.

• Key Recommendation
  Given the impact of hepatitis C and interferon-based therapies on individuals’ mental health (particularly depression, anxiety, self-worth) and quality of life, the Group considers that specialist psychological support be made available to those who belong to the chronic HCV category (including widows, widowers and partners) and who want it; this measure will address the justified perception that their needs have not been taken as seriously as they should have been.