Jon's Hepatitis C Treatment: Prologue

Today I start my treatment for Hepatitis C (genotype 1a).

Despite considerable research on the Internet, especially Ron Metcalfe's blog (www.ronmetcalfe.com), a lot of help from the HepCTrust web site (www.hepctrust.org.uk) , and, in recent months, focus groups organised by London-based HepCTrust, awareness of what I could be letting myself in for dawned only late on.

When last week I finally came to the point of receiving my needles from my really helpful HCV hospital nurse two hammer blows struck deep into my core: firstly, the needle was longer than I'd expected (trivial really but it shook me), and secondly (and much worse) I had to sign a form to say I was aware that the Ribavirin was a dangerous drug that could result in a malformed child.

It dawned on me that treatment really was now for real. Since June 2005, when I was first diagnosed, I had to some extent been sleepwalking towards treatment.

Diagnosis

I was diagnosed with Hepatitis C in a routine Well-Man series of checks. My other half had felt I wasn't quite right - I was more tired more often than I should have been - and wanted me to check my health out. I arranged for a battery of tests for just about every conceivable condition - which I did privately, paying over the odds. But results were quick. The tests threw up Hepatitis C, although I had a clean bill of health otherwise.

I really didn't know anything about the disease so wasn't too worried. I went to a Hepatitis C specialist, again privately for quick diagnosis, and had a liver biopsy and ultrasonic scan. I wasn't too far down the road with my Hepatitis - I had mild fibrosis of the liver - and the specialist advised me not to do anything about it as it could be years before it started to get serious.

I then started scouring the Internet, which threw up all sorts of conflicting information, and read several blogs of people undergoing treatment. I settled on two sites - a Canadian site for leads (www.phac-aspc.gc.ca/hepc/index_e.html -good for leads) and the London based HepCtrust site (www.hepctrust.org.uk - vibrant and invaluable).

The Catch-22s of Hepatitis C

I realised soon that Hepatitis sufferers are in a Catch-22 situation in the UK. Treatment costs £20,000, and for genotype 1 there is only about a 50% chance of success (it's about 80% for most other genotypes). In 2005 the UK's National Health Service was very reluctant to treat people with mild Hepatitis, urging people to wait until their illness was more developed. That seemed daft to me as it seemed obvious to me that the earlier you have treatment the better: the fitter you are the more likely you are to fight it off.

For me, there was also a matter of principle - in Scotland, for example, those with mild Hepatitis C are entitled to treatment.

I was concerned about the risk of passing the virus on to some one else, especially in the family, although as the virus is passed by blood to blood contact the chances of pasing it on are pretty low if one takes basic precautions.

There is another Catch-22 too. It is estimated that in the UK several hundred thousand people have the virus, except that most don't know it. It is a time bomb for the cash strapped NHS. At £20,000 for treatment, the cost of treating 10,000 people works out at around £200million (with a 50% of success for genotype 1 sufferers). If the true number with the virus in the UK were as many as 500,000, that would be an extra £100billion cost to the health service.

With high profile people like Body Shop's Anita Roddick announcing they have Hepatitis C, I thought it prudent to get treatment ahead of the possible tsunami to come.

How I got Hepatatis C

I don't know how I picked it up. It has to be blood to blood contact. At the HepCTrust activities I have met people who have picked it up in a variety of ways - through blood transfusions, accupuncture needles, drugs needles, or inheriting it through their parents. The gestation period can be as long as 30 years. I have a nagging feeling that I may have picked it up at a dentist many years ago.

Symptoms

I have no symptoms - except I feel tired some of the time (but then I've always felt tired at times) and I'm told I'm a bit irritable. When stressed I do feel a pressure in the liver area (not the liver but the muscles surrounding it).

The one thing I have learned through talking to many people with the disease is that there are no norms - there is a suite of symptoms but each person has a different range and differing intensities of those symptoms.

Why I decided to get treated

New treatments are always there just round the corner (for example trials with a new drug, codenamed VX950 are looking very promising right now), so would it have been worth waiting? I decided no - I just wanted it cleared - and cleared now.

When I was first diagnosed I decided to stop drinking alcohol, which I found very hard to do, especially as my job involves a lot of socialising - so I would like to be able to drink a bit again!

I was also concerned about the perception of others - those in my open plan office would not feel comfortable knowing I have the disease (even though I am meticulous about having my own cup etc). I was also worried about impact on life insurance and with health declarations one has to make when changing job. And most of all, of course, was the concern about infecting someone else.

There was one other major catalyst for me deciding to have treatment too. In August 2006 the English National Institute for Clinical Excellence (NICE) changed its guidelines temporarily, recommending that for the time being those with mild Hepatitis C could have treatment rather than have to wait to deteriorate before having treatment (see: www.nice.org.uk/TA016) .

I talked to my doctor (my GP) and he was very supportive indeed - in fact I am the only person in his practice who has Hepatitis C (at least knowingly!) so he has taken a personal interest. I then had a private consultation with another Hepatitis C specialist and then switched to have treatment under the National Health Service under that same specialist.

Yet another Catch-22 with hepatitis is that health insurance companies consider it a chronic condition and therefore it can be extremely hard to get them to stump up the £20,000 needed for treatment.

It took another couple of months to get an appointment to get started - in May. I suspect it had something to do with waiting for the new financial year...

I decided to start on 17th May - a Thursday. I intend to keep working through my treatment, but take every day as it comes.

Who to tell?

One consideration was who to tell. I have been warned by those with the condition that people react in strange ways when they learn that you have Hepatitis C - the people you would expect to be OK about it sometimes are not, and vice versa.

Although I have told close friends - with supportive reactions from every one, and also ensured that my teenage children understand what it is all about, I am more cautious about telling work and professional colleagues, or announcing my identity on this blog.

I decided to tell my immediate manager. I said that I have a progressive liver complaint for which I am starting treatment. I said that the treatment could last up to a year and that I may be under the weather from time to time but would do my best to function normally. He was very supportive. and will preserve the confidence

I also told my Human Resources Manager - I was vaguer there - saying it was a progressive disease and treatment could take up to a year. Again, I had a lot of support from her. Those are the only two people I intend to tell in the work situation.
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