‘I’m clear’. We all love to hear these words, and many of us are desperate to hear them. Doctors love to give good news, patients are relieved to hear it, and families and friends want to celebrate. Thanks to some very successful medical research and drug development in the last decade, we will all hopefully hear many more success stories in the coming years with new 12-24 week drug regimes working to achieve sustained virological clearance (SVR).
But, like many infections, Hepatitis C has both short and long term effects. In the acute phase, there is inflammation and lethargy. If the infection takes hold in a chronic state, it causes progressive liver fibrosis, leading to severe scarring (cirrhosis) and compensated/decompensated liver function, sometimes loss of liver function, such as cholesterol metabolism. Finally, with severe scarring, and persistent infection, there is increased liver cell turnover, and the risk of liver cancer increases.
Being ‘clear’ at the moment means SVR – a defined period of time when no virus is detectable in the blood. But my real hope is that one or more of the new drugs will treat some of the longer-term effects of Hepatitis C, by reducing the degree of liver fibrosis, and by reducing the risk of liver cancer in the future. This will require a huge degree of research with extended follow-up studies to determine the long term outcomes of drug treatment. These studies are hard to complete for several reasons. Firstly, following people for several years is hard – we move, marry, change names and are busy with life and work, so filling in annual questionnaires and attending clinic visits when we are well can fall down the priority list, leading to the dreaded research term ‘lost-to-follow-up’. Secondly, with all the buzz surrounding SVR, which can be measured in weeks, starting studies that may not report findings for 5, 10 or even 15 years requires a huge commitment by universities and drug companies, in both patience and money. Finally, lots of things other than viral hepatitis cause liver scarring and cancer, the most obvious culprits being dietary excess and alcohol. Therefore, these outcome studies need to recruit enough patients to account for all these variables, so that in the end we can evaluate the anti-fibrotic and anti-cancer effects of these drugs with confidence.
When that happens, we will be able to select the best treatment regimes and more often hear that most wanted line … ‘I’m clear, and I’m going to be fine!’
What can be done to help?
- Patient groups are the perfect way to gather long term follow-up data, in a mutually supportive and constructive way. This kind of data is also essential for driving public policy – For example: If a particular treatment strategy is working more effectively, then the information could be shared ; if it is less effective than others, it could be switched to another regime.
- National networks - patient groups can share experiences through networking and social media. Share success stories! GET INVOLVED !!!
- Driving the research agenda – schemes like the NIHR ‘Research for Patient Benefit’ scheme are designed for patient-driven research. GET INVOLVED !!!