Yesterday at the RESHAPE HEP C discussion something struck me. ENERGY and the many ways it manifests itself. Energy can not be created or destroyed. It can only be changed. This is a law of physics.
I’m going to break this down very simply into anger and love.
There was a sense of ‘community’ in the room yesterday. I was privileged enough to hear first hand and face to face from several HEP C positive people who expressed that ‘community’ was greatly lacking amongst people living with HEP C in the UK. Especially when they compared that to the very real and visible community and support systems that exist among people living with HIV. In my experience hope and support are key in any journey or battle we face, be it HIV, HEP C, divorce/break ups, losing a loved one. As decent people we need to reach out to those who are on personal journeys to better, healthier, happier versions of their existing selves. Especially if we have ‘been there’ or have direct experience of the specific struggles they are facing. And equally as important… even if we have not. I am neither HIV nor HEP C positive. However my presence, support and the energy I brought to this meeting was no less valid or no less welcomed than those who were there because they ‘tick the boxes’ and are co-infected or in HEP C treatment. In order for people experiencing the undeniable physical, emotional and mental strains of living with and fighting back against a highly stigmatised illness they need to be freed of social/stigma based strains and anxieties and this is where ‘negative allies’ are integral to their process – I say ‘their’ but it isn’t really THEIRS it’s all of OURS. HEP C is a public health concern…Not an illness for ‘sluts’ and ‘drug injectors’ in the same way HIV is a human illness. It could be you or me or your mum one day. Do we have to wait until it’s so close and already got it’s advantage on us personally before we take action? I hope not. This is LOVE. This is what makes us as human kind so beautiful. But anger – we NEED anger to. In fact someone (the facilitator) actually asked at the meeting yesterday. WHERE IS THE ANGER? We need some…we have a cure for HEP C now but it’s expensive. Approx £50k to treat a person and cure them COMPLETELY. This cure has little to no side effects. But it’s being held back here in the UK – for several reasons, some of which as a logical person with a good working knowledge of processes, budgets, time frames, red tape and commercialism can understand. UNDERSTAND BUT NOT ACCEPT. If this was HIV we were talking about here – JUST IMAGINE! A cure for HIV that wasn’t being rolled out to everyone because ‘It’s expensive’!!!! You can picture the reaction to that – where is that action now? For HEP C pos people??? Ask yourself why the price of this treatment is so high…Someone quiet rightly pointed out yesterday that the cycle goes something like this… Pharmaceutical companies keep the prices high…causing people like myself to make some noise and high profile activist to start taking actions…it gets attention…it sparks change…negotiations take place between our health system and the pharmas and the drugs are made available…but still at a high price….and this goes round and round and all the time the activists doing the work that needs done to make these drugs available but with a bitter taste in their mouth from knowing they are fuelling the cycle that is making the pharmas huge profits at an extortionate cost to our NHS and to us.
Simply – THE COST OF DRUGS NEEDS TO BE REDUCED.
I have it on good authority that the big pharmas are willing to negotiate on the price of these drugs – the way they did on HIV drugs but THEY CAN NOT NEGOTIATE WITH THEMSELVES!!! Some body of people fighting this cause needs to take the negotiations to them!!!
Let’s make that happen…