Hepatitis C diagnosis in the 80s

[HelenaHandcart]

Hi,

If you were diagnosed with Hepatitis C in the early 80s, what would you have been told by the doctors? Am thinking about things such as the long-term risk of liver cancer, other risks, transmissability* to partners, treatments, treatability, long-term monitoring etc.

*sorry if that's not the right word!

I qualified with a medical degree in 1983. We were taught about the types of viral hepatitis which were called Hep A, Hep B and wait for it Hep nonA, nonB (!)

So I don't know that hepatitis C had even been recognised or isolated at the time. (To put into context, it was recognised that there was an epidemic of something affecting gay men in America, as well as haemophiliacs, but HIV hadn't been discovered either at that point, and even when it was, it wasn't initially called HIV).

So I'm sorry I can't answer your question, but I suspect that if the virus hadn't even been discovered, then the lifestyle advice that we might now consider appropriate wouldn't have been offered either. I'm 100% sure that there was no treatment for it though., and I'd say that active antiviral treatment for hepC didn't arrive until the y2000s (though happy to be corrected if somone knows better).

Thank you very much @mauvish , it's very helpful. 1983 is the year my Dad was diagnosed, although I don't know whether, at the time, they told him (or even knew of) the type of hepatitis. It was only when he was diagnosed with stage 4 liver cancer a couple of years ago that I found out he'd had hepatitis all that time. Just trying to understand the bits between diagnosis & the cancer diagnosis decades later. Also, whether my Mum should get tested. She's claiming she was told she didn't need to be, but I don't believe her!

Your mum should 100% be tested as it's sexually transmitted (or via sharing needles to inject drugs). She should also have an HIV test.

It is likely he was told he had hepatitis due to symptoms but not which type.

Nowadays hepatitis c patients are reviewed in a special clinic. Not sure what happened back then. Maybe your dad just thought it was an acute illness and never thought about it again. Maybe he knew all along and was being quietly monitored.

It may be that he developed cancer and reviewing the records, or via a new hepatitis c blood test, they attributed it to his hepatitis c.

There are a lot of unknowns.

www.niddk.nih.gov/news/archive/2016/story-discovery-hepatitis-c-from-non-a-non-b-hepatitis-cure

there you go.

In a nutshell - the first patients to be offered a successful treatment for "nonA, nonB hepatitis" were just 10 people in a research study in 1984.

The actual virus was identified in 1989, and christened Hepatitis C. It wasn't possible until then to test specifically for Hepatitis C (because they didn't know what they were looking for).

2005 - it became possible to grow the virus in the lab.

2011 - other treatments for hepatitis C became available.

Further "tweaking" of treatment regimes has happened since then but it is only very recently that the cure rate has reached nearly 100%.

So your dad may have been diagnosed with hepatitis in 1983, but he wouldn't have been actually diagnosed with Hep C by name until some time later.

As Twentywisteria says, anyone who has been in a position to share bodily fluids with your dad over the years should be tested. It's worth getting tested as many people who carry the virus have no symptoms until they run into major problems, and there is now a treatment that can get rid of the virus from the body with a near total success rate.

Thank you @Twentywisteria, and @mauvish again, all very helpful and interesting information - I really appreciate it.

My Dad had a second wife for a couple of years, who I have now informed & is getting tested. She was not told about this diagnosis at the time, nor when he was later diagnosed with liver cancer. It was only on my Dad's deathbed my Mum casually mentioned in passing the earlier diagnosis & I have started putting all the pieces together! Am trying to do the right things, because I've realised my family haven't. Not sure what to do about my Mum not getting a test though.

Thank you both so much for helping with that information, am very grateful.