I went into my meeting today with a Gold Coast based politician nervous and not brave enough to hope that I could perhaps make a difference.  I have come out hopeful.

I think, at the very least, it may result in Entocort being put on the  Australian Pharmaceutical Benefits Scheme (PBS).  For all the non Aussies out there, that means it will be subsidised by our Federal Government or a safety net will be created for it.

When I was first diagnosed I was given a gut wrenching (not a pun) choice.  Take Predisone and all purpose corticosteroid or Entocort one made specifically for mild to medium cases of Crohn’s Disease and Colitis.  It sounds simple right?  Not so much.  The Entocort wasn’t subsidized and was going to cost about $250.00 per month plus the other medications I am on.  The Prednisone was subsidized and readily available… and came with 4 pages of perspective side effects.  If I went on the Entocort we stood to lose the house we moved into just 6 months earlier.  If I went on the Prednisone I may become to ill to work and pay the mortgage.  I don’t think anyone who has just been given a diagnosis involving chronic and incurable illness should be made to make that choice.  I took the Prednisone home – but never started it.  With some help from my family we managed the large medication bills until I was placed in the public system.  Entocort was then available to me under the State Governments medication subsidy through public hospital dispensaries.  I cried in the office of my new GI as he told me the new cost.  Momentarily at least, we had some of our life back.

Do ordinary middle class people know about bulk billing tests and subsidised medication?  I didn’t.  I thought if you paid to go to a doctor you were privy to the best care.  I mean $75 for 20 minutes, its got to be good right?  Diagnostics should be free.  Finding out you are ill is enough of a burden, the financial cost on top of that when you have to put your hand in your pocket is just salt in the wounds – trust me.

I digress.  Our converstation covered a lot of ground.  What nearly broke my heart right there in that office (and I am proud that I didn’t cry) was her experience with IBD.  While she doesn’t have it… she has had experience with it.

She mentioned to me that these disease are still treated the same way they were 10 or 20 years ago – and from what I have read thats true.  There have been small improvements like a corticosteroid thats designed for the disease and doesn’t poison your blood stream and the new biological treatments show merit.  But break all that down and its still corticosteroid to get you into remission and immunosuppressant to maintain remission.  The names have changed, the strengths have changed and in some cases even the deliveries have changed, but the treatment at its core stays the same.  They still aren’t sure what causes it… they still aren’t sure why its happening and its almost 100 years since it was discovered.  I mean, I know it doesn’t automatically kill you, but it can.  Complications, mental instability and the treatments themselves are taking the lives of people with IBD – its just not a ‘direct result of it’…. but it is.  These are serious illness and its beyond me why people, ordinary people, people in power and people in medicine don’t take them more seriously.

So… I brought out the studies on Hookworms (Helminth’s) and she blinked at me.  Well that was a good chat up until the point she discovered I wanted to give myself Hookworm and I was crazy.  Luckily, because of her connections, she realised it was desperation ranter than insanity – well perhaps a healthy mix of both.  She understood that being told that by taking the treatment for Crohn’s disease the odds are you will end up with a Cancer.  She also understood thats not a choice.  We have to treat the Crohn’s because I am a living, breathing example of what happens when its not treated… but all we are really doing is trading one condition for another.  Not even – it doesn’t cure Crohn’s, Cancer is just a gift with purchase.

She took the studies.

There is no guarantee, but there isn’t a guarantee with anything now days.  Now there is a chance where before there was none.  There is a chance that Helminthic Therapy is a better way, a safer way to deal with a group of diseases that no one talks about.

We spoke about many things – inducing being an activist… not a flag burning, shoe throwing activist… but someone who creates connections and uses them to better the lives of people who are suffering.  I liked the sound of that.  I like the idea of speaking up for the people who can’t.  After having been in that situation myself, its an appealing career path.

I was never going to take this diagnosis or my choice from here on out laying down.  I was never going to roll over and say “well this is as good as it gets”.

There is a better treatment – they just need to be pushed to find it.  There is a cure – they need to be pushed to treat these disease with more urgency and more respect.