Hi Paul,

regarding my blood transfusion and yours in 1988: I had the transfusion in Oct 1990, AFTER they were screening for HEP C. Found out I was HCV positive when I donated blood in 1992. Saw Red Cross and was told that blood was screened and only way people could get HCV was through sharing needles. Told them I don’t do drugs, so where else could the virus had come from? I guess they figured I did do drugs and was a bit coy about it. Later in 1995(?) I had a message left on my home phone about the infected blood – no big surprise. They did a ‘look back’ program and I guess they would have identified others as well and told them.

Interesting journey since then: I found out some friends I worked with had HEP C arising from dalliances with drugs when younger. All good people and maybe better then me. I think the reasoning for the Red Cross walking away was to protect the continuity of the blood supply – I take it this reasoning also included the idea that HCV positive people would be looked after mainstream.

I found the medico’s who supported me since then all good. I often wonder what it is like supporting HCV positive people over long periods of time; it must be a hard road to travel.

In February 2015 I wrote a submission to the Australian Government’s Fourth National Hepatitis C Strategy, the Standing Committee on Health inquiry into and reporting on: Part c. The costs associated with treating the short term and long term impacts of Hepatitis C in the community.

Part of the submission is set out below

All my learning tells me that treating health concerns is best done as a primary endeavour; if you can prevent or cure something in its early stages, then why not? We all know that, but don’t mention stuff about needle exchanges or how on earth anyone can pay for Sofosbuvir.

My wife worked as a radiographer and radiotherapist in a poor Latin American country where health concerns are left so late. Everyone is that poor they cannot afford primary care where a recovery may be gained; instead all the expensive radiotherapy cancer treatment is directed towards necrotising wounds the cancers have been allowed to become. Is this a model of Primary care or palliative care? It’s a waste really, and one that we can duplicate here with Hepatitis C if we like.

Hard choice, a quid up front to keep a working bod working and paying taxes, or lets have everyone of a Disability Support Pension instead.

Some added private thoughts:

I have a great respect for people involved in treating Hep C – someone has to shout into the wind and look after us. Support them in giving them a wider range of affordable options to treat us.

I have met a lot of people (some I knew already but I did not know their HCV status until I mentioned mine) who made some dumb choices when younger. Like me, they deserve better.

The person who donated the infected blood I got was doing a ‘good thing’ with the intention to do his bit for society to allow people who needed blood to live. Any other insinuation or interpretation about any moral blame for this illness or justification for treating someone is just plain crap.

The prison system appears to be an incubator for these types of epidemics. Who is going to manage all the sick people who cannot work (I can use my brain to get around the lethargy) and who end up with liver cancer.

What about the families who miss out on a full life while some family member is crook with this illness and not able to fully provide.

Recommendations

Focus on primary care up front whatever the perceived cost; it will be cheaper in the long run both financially and morally.

On the question of Gilead’s ownership of Sofosbuvir, our government needs to lobby harder for the health of Australians. The recommendation here is to do so. Gilead has no moral stance and its ‘dog in a manger’ attitude is not something anyone should respect. I see on the Doctors without Borders web site India is able to look after its people, why can’t we? Why is problem not addressed more forcibly by my government so that Australians are looked after? Individuals cannot address this; their elected representatives need to for them.

Got no reply but it is on their web site. My question now is not “What happens now?”, but “what happens in the future?” Has not this medication pricing stuff occurred with HIV? Now it is HCV. What delays can we expect when HEP X, Y and Z are discovered?