Finding those most in need of hep C treatment: Injecting Drug Users or Baby Boomers?
I am writing this blog on a train back from an amazing two days in Scotland looking at hep C services and the challenges faced in eliminating hep C. Scotland has a direction of travel and action plan for its hep C services that it has been investing in for over a decade. The maturity of services and the debate on the way forward is significantly more advanced when compared to the overall chaos and lack of clarity or organisation in many services in England. Scottish hep C treatment services face many of the same challenges as the rest of the UK but Scotland has a can-do attitude compared to England’s often reluctant, grudging intervention. The English attitude is best characterised by NHS England’s untrue characterisation of hep C treatment costs as the biggest financial risk facing the NHS and is in stark contrast to the positive approach in Scotland.
The priority in both Scotland and England is to treat those most in need of treatment. This means people who have hep C and significant liver disease are prioritised for treatment. The difference is that in Scotland your disease is prioritised at a lower level of hep C-related illness. In at least one area in Scotland anyone with hep C has the same priority.
Key to this approach in both countries is finding people with hep C who have significant liver disease to meet the required prioritisation criteria. Brainy people have used lots of formulas and inputted data to come up with an estimate that half of those with hep c do not know they have it.
Given that 90% or more will have contracted hep C from injected drug use, it seems sensible to start looking for those in need of treatment in this cohort. So test lots of people injecting drugs and you find lots of people with hep C. Unsurprisingly, this turns out to be true, but it also means that you also find lots of people with hep C who have yet to develop liver disease to the extent that they qualify for priority hep C treatment. Scotland is treating people at a ratio of two-thirds priority to one-third non-priority. Although you may have to wait if you are non-priority, you are at least on a journey towards a cure. In England the picture is far less clear but anecdotally it seems rare for anyone with hep C but no related illness to be treated.
We could find a ready supply of people via drugs services if we wanted to treat everyone with hep C regardless of related disease. This is something I think could be achieved if we did a deal with pharmaceutical companies based on the volume to be treated. However, aside from some areas of Scotland, this is not the position we are in.
So what do we know about people who will have hep C and are likely to have serious related liver disease? It can take decades for hep C to cause liver damage so people will be older and many will have been diagnosed with hep C and told there is no or very unpleasant treatment. Many of these, the ‘lost found’, will not be in touch with services. Those responsible for hep C treatment in Scotland suspect that a sizeable number of people will have dabbled in occasional injected drug use decades ago and it will not even occur to them they may have hep C. They also suspect that many of those who in the past injected drugs migrated to alcohol as a more acceptable addiction.
Based on the opinion of experts and patient groups in Scotland, if we are serious about finding cases we need to systematically target the baby boomers – those born between 1946 and 1964 who are now aged 50-70. Some will be in drugs services; some will be in the recovery community, AA, NA etc. Others may be in alcohol services or they may be working in the drug and alcohol sector. Many will have no contact with drugs and alcohol services and will not in their wildest dreams imagine they are at risk. In Scotland guidelines already state that anyone presenting with abnormal liver function at the GP should be tested for hep C. There is also clear head of steam in Scotland to see hep C testing become much more standard across the NHS.
Not for the first time I find myself wishing England was run from Edinburgh.