It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases. The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too. It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.
BUT it is changing. The trial at St Vincent's hospital in Sydney is proof of this. They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient. While this is great news it can also be used to highlight the short comings of the Australian system.
A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation. Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT. Now I decided to go for the treatment in Chicago. Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.
Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia. Pops is still waiting after two years, but at least the end is in sight. He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant. It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.
The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments. Australia, you need to get your act together, stop procrastinating and start saving lives.
Until next time, stay well:)