Time to get serious!

I'm lucky.  Scratch that, I'm really lucky.  With all the people around the world that have a serious autoimmune disease I am one of the very few that have been fortunate enough to be the recipient of a hematopioetic (HSCT) stem cell transplant.  Out of all the people in the world that could benefit from this procedure the total number of people who have had it would be less that 1%.

And how does this make me feel?  A part of me feels a little guilty about this.  I mean, why me?  What makes me so special?  Why am I so different than anybody else who is in my boat?  Others may answer these questions for me and no matter how truthful or well meaning the answer may be I still don't feel any better for it.

But there is a positive.  I am extremely passionate about making sure that this procedure is available to everyone that needs it.  Now I am not Ban Ki-Moon or any member of the UN security council so to for me, launching a campaign with international appeal would be almost impossible.  However, I can focus on the country I know and love and maybe make a difference here and that is Australia.

What is really exciting is myself and a group of other HSCT survivors and concerned members of the community have a plan to accomplish this goal and it is time for me to share it with you.  People have already seen snippets of what we are trying to achieve on Facebook and GoFundMe but in order to reach certain media deadlines we needed to push things forward.  This post serves as a way to communicate exactly what our plan is.

HSCT is nothing new.  It has been used to treat certain cancers and haematological disorders since the 1960's.  It is only recently that the move to get it used for autoimmune diseases has started to gain some momentum.  However, in Australia we are sadly lacking.  The number of cases that we have done here is very little compared to what has happened overseas and that needs to change.

In order to do that the government needs proof that the procedure works before they put it on the medicare schedule.  The only way to do that is to get stage three trials done and all the positive media, petitions or even protests at the gates of government house will not change that.  The simple fact is that laws have been put in place to protect us and these laws actually make sense to me.  I'll give you a couple of reasons why.  First, have you ever heard of thalidomide?  It was once used to treat morning sickness in pregnant mothers and was widely prescribed without proper vetting by the medical and scientific community.  We later discovered that many of the mothers gave birth to physically deformed babies.  From that point on regulations were put in place to make sure it would never happen again.

Secondly, ever heard of a guy called Walter Freeman?  Walter Freeman was the main supporter of lobotomies in the USA.  He performed them on a range of people from children through to the elderly.  Although it did come under criticism he went and did it anyway.  It wasn't until later that we realised that it was about as stupid as aimlessly sticking pins in your brain (oh yeah, that's exactly what it was).  However, it only makes sense that we do what we can to make sure things like this don't happen again.

Given that the government is putting massive checks on new therapies and treatments how does anything really ever get done?  Well before government approval can happen safety and efficacy needs to be proven by completing stage 3 trials and Australia has to do the trials or at least be a part of an international effort.  The government could help by sponsoring these trials but even if they did it would take ages for the bureaucracy to get that through so if we're going to do the stage three trials we need to fund them ourselves.

So the next question is who will do the stage three trials?  Half the work is done.  Dr John Moore wants to do the trials, and he just needs the help.  The clock is also ticking because for us to get the biggest bang for our buck we need to do this with international cooperation.  This way we maximise our research and also help the international community but we need to do it now.  The rest of the world isn't going to wait for us so we have got to get into it.  The time for talk is over.  It is now time for action.  Get the stage 3 clinical trials done and HSCT will become widely available.

Given that, we are in the process of setting up an organisation to raise funds and support the trials.  This is now my main focus will be on this.  But don't worry, I'll keep you posted and forgive me if I keep hounding for money but to do the right thing ain't gonna be cheap so please donate at:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Donations Please

In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP).  I had to go to Chicago because at the time this treatment was unavailable in Australia.  Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be.  For the people that know me you know how remarkable and effective this treatment has been in giving me back my life.  If you don't know you can check out my video here:-

CIDP HSCT Story

HSCT is nothing new.  There are many haematological disorders and cancers that have been treated by HSCT since the 1960's.  For various reasons it has not been used for autoimmune diseases until recently.  And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.

The good news is that it is on the radar.  We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness.  As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.

The work we do here in Australia will also have international benefit.  The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.

In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it.  The first step for us is to finance the startup costs.  You can help do this by leaving a donation on the GoFundMe page linked below:-

GoFundMe

Any funds collected over and above the startup costs will go into promoting stage three trials.

Make no mistake, the outcome of these trials will have a significant impact on this country and the world.  It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.

Please give generously.  The thousands of people with severe autoimmune diseases will thank you for it.

Stay well:)