So, Why is it so?

In my last post I stated that here in Australia we like to conduct "redo" not "research".  If you didn't read it I suggest you do by clicking this link.  The question remains why we do this?  In case you are expecting me to give you reasons why it all makes sense that we do it this way, I apologise.  These are not reasons that work for the greater good or are in the best interests of patients or the community at large.  They either serve a minority or make no sense.  I have four reasons:-

• First is a reason my friend and reader of my blog, aminfla, alluded to in a comment on my last post.  Big pharma.  Big pharmaceutical companies like one kind of research and one kind only. The research that leads to them making a profit.  The latest and greatest wonder drug that they can pedal to the masses for millions.  Don't get me wrong some of these drugs that have been developed over the years have changed the face of modern medicine.  But sadly, when research is available that has the potential to do the opposite to their bottom line it is seen as a threat.  So they protect their interest by pushing their own research on specific charities that specialise in funding medical research (which is quite successful as they donate quite heavily to these charities) or finding ways to discredit the other research.  Is it illegal?  I don't know, you'll have to ask a lawyer.  Is it unethical?  Absolutely.  I'm not saying that these companies should fall on their sword and support the other research, but they should certainly not actively try to hinder it.

• Politics.  Research is about knowledge, expanding our understanding and making new discoveries.  Politics should be about the successful running of a country or state but it's not.  Politics is about winning.  Therefore, whoever is the current government they don't want research, they want wins and unfortunately research involves a lot of failure or from a political perspective, losses.  As Thomas Edison said, "I haven't failed, I've just found 10,000 ways that won't work".  Politicians don't want to fund the 10,000 ways, they just want the victory, the one and in order to make sure that happens they just fund redo.  However, being politicians they do not admit to this.  No that would be political suicide.  Instead they point to my third reason...

• Thalidomide.  Most of us have heard of this drug.  If you haven't, here is a quick recap.  Thalidomide was developed in West Germany for a variety of conditions and was also deemed to be a safe drug in the treatment of morning sickness.  It was then marketed in a varieties of other countries without receiving proper scrutiny.  Only after that all happened it was realised that the drug caused severe deformities in the unborn babies.  Since then strict regimens have been in place for all research done outside Australia.  Now, I do understand that this was a horrible tragedy.  Many babies died before they even had a chance at life and those that lived had to live with severe disability.  BUT, should that mean we have to redo every single piece of overseas research?  I don't think so.  Firstly, the mistake that was made in West Germany could have been made anywhere.  Germany is actually quite strict, rational and regimented about its medical research (disclaimer: I have no idea what it was like back in the 1950's and 60's) and it is somewhat arrogant to think that we as Australians (or any other nation) are incapable of making the same mistake.  We are.  After all, money hungry pharmaceutical companies that like the idea of fast tracking their chemicals to market reside in every corner of the globe.  Lastly, there has to be better ways of safeguarding people against such problems, but more of that later.

• Lastly, the medical fraternity.  Have you ever been treated by a doctor that displayed some degree of arrogance?  There are plenty of them out there and many of them are simply too arrogant to admit they are wrong.  Doctors can formulate an opinion based on little evidence and once that has happened it is almost impossible to convince them otherwise.  Or maybe they are told that the best solution lies in a different field of medicine and they are 'no longer requires'.  Ego kicks in and hey presto!  They suddenly don't like the new idea.  There are plenty of examples.

Anyway, they are the reasons I have come up with.  If you have any more I'd be happy to hear them.  Especially if you disagree and believe you have that "all makes sense" reason.  I'd love to hear it.  Until next time, stay well:)

Damn we're good! Or are we?

Australia has a very good health system as do the two other countries (USA and UK) that I have been treated in.  But are any of them perfect?  Absolutely not!  In an industry quite as big as health perfection is impossible, especially when there are so many critics, but perfection is a noble goal and even if unattainable it will serve to make a health system as good as it can be.

But for the purposes of this blog I will focus on Australia and to narrow it down a little further, the field of medical research.  Now, Australia has an issue.  There are far more research projects than dollars which means that either some research simply does not get realised or the projects are scaled back to fit in with there available budget.  Neither is ideal and both happen with all too much regularity.

But the question then becomes who decides who gets funding and who doesn't.  In Australia this comes down to four main groups:-

1. Governments - The main source of medical research funding in Australia, both at federal and state level. The main body is the Nation Health and Medical Research Council (NHMRC)
2. Private donors - Although charitable donations are plentiful, In order to be able to make a choice as to whether a research project happens or not, the donation has to be quite sizeable.
3. Charities - Certain charities sponsor medical research and collate smaller donations to distribute them into something more meaningful.
4. Corporate - Will invest heavily in research but only if there is a buck to be made.  For example, big pharma.

One important group missing from this list is patients.  In other countries patients can fund their own treatment but not in Australia.  But this is a post for another time.  At the end of the day, the biggest contributor is the government, followed by charities.  The other two are also very hard to influence as they are autonomous in their decision making.

The next question is how does this money get allocated?  Well, the short answer is badly and I'm going to go back to the example of HSCT on this one.  Certain charitable organisations who are allegedly an authority in this area have stated that they are not interested in funding HSCT for multiple sclerosis and autoimmune diseases until stage 3 trials have been completed overseas.

WHAT!!!!!!  According to the Oxford English dictionary the definition of research is "The  systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions".  If you are simply going to follow in the footsteps of someone else work and do exactly what has already been done you are not going to establish facts because these facts have already been established.  You are not going to reach new conclusions because these conclusions have already been reached.  Essentially this is not research, this is redo. 

In the meantime, while we wait for the trials to be conducted overseas and then conduct our own research, sorry redo, which is at least a three to five year wait, Australians are dying and suffering.

In my next post I'll give you some insights into why we do it this way and more importantly, what we can do to make it better.  Until then, stay well:)

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:)