Monday, October 28, 2013

Public perception?

Recently a friend and fellow HSCT survivor (in this case MS) alerted me this article about a very new trial that is happening in Sydney with HSCT for autoimmune diseases.  Firstly I just want to say that starting a treatment such as this in Sydney is fantastic for all Australians.  In an international arena our politicians are very good at lauding Australia as being one of the best but with HSCT for autoimmune diseases we have been caught dragging our feet.

But it is this article I want to focus on now.

For those that don't know, The Age is a very popular and respected newspaper in Australia and while it is great that we have a trial here in Australia and it garnering publicity, I had huge problems with the inaccuracies of the article.  I will list them below:-

  1. They make the procedure sound so dangerous.  Although it is a hard procedure to endure, it is relatively safe.  The Dr Burt trials in Chicago boast a safety record that is better than that of more conventional approved therapies and leaving the disease unchecked.
  2. Use of the word "cancer".  Now cancer is nasty you'll get no argument from me there.  But the journalist makes it sounds like cancer is the worst thing, bar none, that you can suffer from by a long shot.  Well just like cancer, MS can also kill and the time in-between now and your final demise ain't pretty either.  And MS is not the only one.  There are thousands of non cancer diseases that are severely debilitating or killers too.
  3. Quote from the article "If he survives long enough - that is, if a piece of dust doesn't get in his eye and spark a fatal infection......" Come On!!!!!!  That is just fear mongering.  Anyone can get an infection from dust in the eyes.  In fact it is less likely for a HSCT patient as they are kept in a sterile hospital ward, not a construction site.  And even if an infection does take hold, qualified staff are on hand to treat the patient.
  4. The time table is all wrong.  The stage of neutropenia is about eight days.  Neutropenia is when there is no active immune blood cells in the body.  The article makes it feel like weeks and stem cell infusion occurs after a long period of neutropenia.  This is incorrect.  The stem cells are actually administered a couple of days before your white cell count reaches zero.
  5. It is made to sound like only a few people have gone through the process.  This is not true.  Excluding Australia, I know of seven different facilities that are providing the service and that could well be more and Dr Burt in Chicago has completed over 500 for a range of autoimmune diseases and his trials have reached a stage 3 randomised phase.
  6. The article also makes it feel like it is a procedure of last resort.  Simply not true.  HSCT is most successful and most effective if received early in the disease progression.
However, after thinking about it a bit more I was left wondering if this is not just a factually incorrect piece but a reflection of what society thinks of the procedure?  It is hard to judge as I am one of the few who swim very close to the centre of this small circle so to try and foster a perspective from the outside looking in is quite difficult.  So at the least I hope that the people that will read this post will keep an open mind about the procedure of which I will say I am a huge advocate of.  If you want to know why, just read some of my earlier posts.

Stay well:)

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