Hi GF,

There are many kind souls that give a good listening ear at the HepC Trust and no doubt this charity was originally started with good intentions, by patients. The kind listening souls, who are volunteers and not paid. However, that was then and this is now.

However, how much are they doing to actually help patients access treatment working within the system? (If anyone reading this knows any different, I would love to hear about it).

The patients again, are asked to set up patient advocate patient groups in NHS hospitals, I can’t speak for all, but I know two years ago, when I was feeling very ill, there was no way I could have mustered up the energy for this and I was only F2, you know? I also didn’t want to revisit the hospital where I staggered with joint pain for my long waited first appointment and where the consultant didn’t didn’t show up, leaving a note saying he ‘didn’t want to see me’. Not forgetting the risk of loss of privacy, which is a concern for many due to stigma.

Likewise, patients were asked to fundrase to pay HepC Trust legal fees for this recent legal challenge.

I suggested to the HepC Trust that maybe they should ask the pharma companies to contribute, seeing as they are funded in part by Gilead eg. Their response was to say they wanted to keep it separate, but how can they do this in reality if big pharma sponsor them in part? There is clearly a conflict of interest, (didn’t the lawyers see this?)

Pre Fix HepC, I was continuously frustrated by the amount of meetings, expensive conferences, charities and think tanks that were set up to tackle the diabolical state of lack of humane treatments for HepC patients. Did the enormous amount of money spent for these endless debates and recommendations for highly paid ‘quangos’ etc bring access to treatment further forward – At all? I suggest not. I’m sure there are a few genuine people in there, not to belittle their work, but patient care is surely the aim?

That money could have been treating the sickest of patients, including a dear friend of mine for whom access to treatment came too late (still untreated) mostly due to health authority ‘error’ – Criminal and devastating for that patient and all close to them.

You are so right with this statement :

STOP WAITING FOR A HANDOUT AND CURE YOURSELF. CONTACT ME IF YOU NEED HELP. Don’t be a victim of these lies and deceit.

Look at what has been achieved here by Dr Freeman, MonkMed and Greg Jeffereys who started the ball rolling.
REAL results! Real lives changed for the better and real lives saved. When Dr Freeman went to Barcelona, no doubt at his own cost, it helped hundreds to get monitoring by getting EASL support from official trial results My latest hospital blood request forms had ‘Redemption’ written under the treatment section – What an achievement! This is the type of thing that is needed. Real positive action, not endless and costly words via unconnected bodies.

I believe there is still a place for the HepC Trust as a supportive, listening body who can offer advise. The advise should be ‘If you’re not getting treated by the health authority, insurance etc get generics via a trusted supply chain, ie FixHepC ‘. Not all can afford this, but the cost is not so high and it can be raised with some effort for most. For those who are very poor and whose exchange rate is prohibitative, then these charities should be raising money for these people to get treated, not fior endless meetings of talk, no action that raises the hopes of patients only to be dashed again. It seems an extremely expensive way to keep the cause vaguely in the public eye with little in the way of results.

Many, Cancer charities in the UK eg offer financial support to those in need for many cases, why not HepC charities too?

I’m sure my post won’t be popular either, but hey.