Post-its from Practice:
Shocking State of Hepatitis C treatment (Apr 2006)
John had come back to get the results of his recent blood tests. Registered with us for the past 6 years, his drug use is very stable on 90mg of methadone but his major problem has always been alcohol, which he finds more problematic to control. He is also positive for Hepatitis C and because he was feeling more unwell, we had repeated his blood tests. A couple of years ago, he had attended our local hepatology clinic but had been told that he was not eligible for treatment due to his continuing use of drink and drugs. Sadly, his liver functions tests were worse and for the first time his alpha- fetoprotein was elevated, raising the possibility that he was developing liver cancer.
John's situation is not unusual. The prevalence of Hepatitis C is between 0.7-1% of the UK population, equating to about 470,000 sufferers. Injecting drug users account for over 92% of cases. Shockingly, Britain is the worst country in Europe at treating Hepatitis C infection, risking many lives because of inadequate screening and treatment for the illness. Less than 10% of potential cases of infection have even been diagnosed.
The treatment situation is also appalling with only a tiny fraction of infected patients entering treatment. It is estimated that this lack of foresight will cost the NHS up to £8billion over the next 30 years. Hepatitis C treatment now cures between 40 and 80% of those infected. Early treatment may have prevented John's recent deterioration, but only 1-2% of infected people in the UK receive NICE approved treatments, compared with patients in France who are 6-12 times more likely to enter treatment programmes.
In our practice, (list size 14,000) we have 93 known patients who are positive for Hepatitis C. (Statistically, there should be 98-140 patients.) We have referred 38 of them, but only 4 (8.3%) have commenced treatment. The other 34 have not been offered treated for a number of reasons, the commonest ones being because they continue to smoke or inject drugs or drink or have declined a liver biopsy. None of these are evidence based reasons for refusing treatment but seem to reflect opinion based medicine - perhaps something to do with the patient group who suffer this condition?!
And why haven't the other 55 accepted our gentle persuasion(!) for referral? Their reasons are varied: judgemental attitudes of hospital staff, out of date information about treatment, fear of the liver biopsy and feeling that they are not worth it. Many of them said they would accept treatment in general practice. This is now being done in a few areas and, for us, seems to be a practical way forward.
At 39 years old, John should not have to die from a preventable disease. With the necessary resources, support and funding, Hepatitis C treatment can and should be developed in general practice - it's our choice ...and their lives!