MS societies - Why so anti HSCT?

It is a question that has puzzled many HSCT advocates, both inside and outside of the medical and patient community.  To those of us that have understood the process and talked to people who have gone through the procedure and benefitted from it can't understand.  Myself included.

Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random.  But a distinct lack of support is extremely puzzling.  I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.

And why should the MS societies point people in the right direction?  The answer is simple.  If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune.  The very least that could be done is for that body to recommend the places that are doing it right.

They should also fund the research.  I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body.  But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore.  The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment.  So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million.  Surely they could use a small portion of this to support the trials?

So why have MS societies and organisations been so anti HSCT?  I need to put in a few disclaimers here.  Firstly,  I don't know that all MS organisations are totally anti HSCT.  I apologise to any that support the treatment.  Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence.  One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.

Anyway here are my reasons/theories:-

1. They are getting their advice from the wrong source.  Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem.  MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists.  Neurologists simply do not understand HSCT.  It's a bit like getting an electrician to do your plumbing.  Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
2. They are entrenched deep in the pockets of the pharmaceutical companies.  Big pharma loves charitable support groups.  They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations.  Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap.  Big pharma like patients who need to pop an expensive pill every day for the rest of their life.  Currently, MS sufferers are a huge cash cow for them.  If an MS charity supports HSCT, big pharma might pull their funding.
3. MS societies are scared.  After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for.  Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community.  Much of what they do would be be made redundant.  But isn't that the way it should be?  Service the organisation and patients so well you're no longer needed?  I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever.  You finish your house and then find a new one to build.  If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
4. Early failures.  Yes, HSCT had been tried early without much success.  For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely".  And some people have.  Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients.  We cannot live in the past.  Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it.  Alas, the memory of these failures may have a long memory.

Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4.  There are ways we can do this.  The new organisation I am involved in is called Reset Australia.  Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases.  If you want to do so you can here:-

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

Until next time, 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:)

Wordle

In order to find a fun and creative way for my daughter to learn her spelling words they suggest that the kids in her class go on line and put them into Wordle.  As this was the first time she'd done it I gave her a hand and found out you can actually wordle a blog.

Yeah, you guessed it,  I wordled my blog and this is what I got.  I don't know what it means but I think it looks pretty cool.  This is what I got

Oh yeah, in case you didn't know we are trying to raise funds for an organisation to support HSCT in Australia.  Any donations would be greatly appreciated.  Please visit http://www.gofundme.com/72o5z0

Stay well:)