International Rare Disease Day 2015 -- 28th February --

It's that time of year folks -- again already!

"International-Rare-Disease-Day-2015" / 28th February...

Sean Hepburn Ferrer is the eldest son of the late, beloved Audrey Hepburn, actress and dedicated philanthropist, and Mel Ferrer, actor, film director and producer. Sean Hepburn Ferrer is very well placed to be the Rare Disease Day 2015 Ambassador. He is familiar with the struggles people living with a rare disease and their families face. His mother, Audrey Hepburn, passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million.

The personal experience of the Rare Disease Day 2015 Ambassador is common to the millions of people with rare diseases, as well as their families and caregivers. With the theme of Rare Disease Day 2015 focusing on Living with a Rare Disease, we are honoured to have the support of Sean Hepburn Ferrer as Rare Disease Day 2015 Ambassador.

It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to pay tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

A quote from Sean Hepburn Ferrer

"...On January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.

So, when Dawn Green, CEO and founder of the 'Pseudomyxoma Survivor' Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

'Rare' is a word most often used to convey the same values as  'precious'… unique… valuable. And if one adds up all of us precious beings that suffer from a 'rare' disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to 'rarity'… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

When my mother visited Africa for UNICEF she would often say; "we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…" It is in this spirit that I accepted this invitation..."

..And on a more personal note..!

Hello friends, readers, TM'ers and other 'special-people'.. I'm apologising for my disappearance from this blog in the last 4-months, it's not been deliberate. But, I've been busy with all sorts of activities - from starting a new business venture-(Raisbeck-Enviro-Mechanical-Services) and getting all of the legalities/licenses/website etc., together. As well, I've been spending time exercising with my dog Zeus!

Besides all that - I was involved in a very special event for me, along with my 'old'-band-mates and best-friends, Dave, Greg, Justin and Michael - called "MindMeld" 20th Anniversary gig! We were just one of the pre-eminent 'rock-n-roll' good-time bands, playing the biggest-n-best hits from the eighties and nineties in and around Newcastle's night-life between 1992-1997. We went our separate ways in '97 but remained in touch - even though we lived very far from each other. True friendships never fade... 

Our name 'up-in-lights' outside the "Blackbutt-Hotel"


Held on the 8th November, 2014 and hosted at the 'Blackbutt-Hotel' in Newcastle, New South Wales, Australia. What a fantastic night it was too! The pub was packed-out!

L-R / Justin-[Keyboards/Vocals], Michael-[Guitars/Vocals], Greg-[Lead-Vocals], Dave-[Drums/Percussion]


With 2x "30-year High-School-Reunions", and all of our closest friends and cohorts. We played a bunch of hits from the 80's-90's and the punters loved it...

L-R / Greg-[Lead-Vocals], Dave-[Drums/Percussion], Glendon-(me)-[Bass-Guitars/Vocals]


We spent 6-months practising our 'set-list', individually at home - and we came together at Justin's place for 'live-practise' inside the specially made sound-proof-garage' we called 'VEGAS'-(no-windows/no-clocks)...

L-R /   Justin-[Keyboards/Vocals],   Michael-[Guitars/Vocals],   Dave-[Drums/Percussion],   Greg-[Lead-Vocals],  
Glendon-[Bass-Guitars/Vocals]

I hope you all had a wonderful Christmas / New Year, and I trust that your 'New-Year-Resolution' is on track too. Please feel free to comment, or just drop me a line and say G'day. I'd love to hear from you...

A peaceful waterhole - another beautiful moment in time along lovely 'Cedar-Creek'

Walking is better with a friend..!

Hello readers, friends, and fellow TM'ers!

How many of you have a dog? I believe my walking is 'better' - with a friend..

My companion Zeus - (a 'bull-arab'-cross) - absolutely loves a walk up the Cedar Creek trail..

Dogs have been a part of my family for many years, living their lives with us and giving their love freely. There is so much said about there being a real benefit to your soul - of having a dog, sharing your love with them and in return, experiencing their loyalty. What is it, to 'own' a dog? When in all reality, they can just run away if they choose, right! I believe to have 'companionship' with a dog is like getting a present, every day!

A flowering 'Acacia'-Tree is a member of the Eucalypts - the worlds only flowering trees!

It is a gift, one that is returned to you with interest. For they are caring enough to welcome us into their lives, yet for them, their existence, is totally based on trust. They trust us to feed and care for them, play with them and teach them good manners (mostly), so then they in-return shower us with love and protect us - with their lives. Let me tell you something about our 'puppy' Zeus..!

Zeus loves this little swimming-hole very much!

He's been with us for a little over a year now, and he's a quick learner! I have this 'app'-for my iPhone called 'Runtastic', so every time I go for a walk - usually every day - it makes a verbal-countdown from "10-9-8..." Well, Zeus just flips out and jumps to attention and comes to me like, "..daddy-daddy-lets-go-for-a-walk.." Now, can we???? A-ha-??? He's a real 'mate' for me on our walking adventures.

Cedar Creek delivers these amazingly 'tranquil' settings..

I've taken lots of photos of our local surroundings (a flowering'Acacia' above) and of the Cedar Creek itself, with which our road we live on takes it's name. He has a favourite thing to do when we walk along and that's to walk into the creek at 'special' spots, up to his chest and stand there, he's weird! But, we love him.

Cedar Creek has a 'magical' presence - the trees create an amphitheatre..

Since January this year, when we started walking together, we've walked a total of over 600 kilometers! That's about 370 miles! Not bad for a 48-year old 'broken-man' with "Transverse-Myelitis" - and his dog! You know what - I've felt better in the last three months, than I have for three years and I put it all down to my dog! Because he drives me to do it - I walk with him until we've both had enough, not me, both! ...Thank you Zeus! 

Zeus and me - (..before I lost my glasses!) ..but, that's another story altogether..!

I live with my pain everyday, as you all do too! And, I must be striving to 'pace myself', which is very difficult for me - I'm a 'boom-and-buster'. But, we all must keep looking forward and do what I call.. 'lifing-through-the-pain'..! 

A thank you message..!

Hello readers, supporters, and friends alike! I would like to apologise for being "away" from my blog for these past weeks, sorry - some believe saying sorry is a weakness. Not me. I believe in the opposite! And opposites attract - so more people need to say sorry, in my opinion. The World would be a better place. Now, imagine hearing these three words, together... Sorry - thank you!

Thank you. Two more little words that mean so much, yet are not said enough. We go around living our lives day by day and we hear, read and see other people about, doing the same things. Mostly, we're complaining that we've run out of time to do all the things we want to do.

We know our problems are unique to ourselves - but, I want to personally say thank you to the people closest to me that I've taken for granted and brushed aside, I'm truly grateful. People like you and me have chronic conditions that bring all sorts of symptoms. Symptoms can be treated but the underlying conditions remain - we have too many "bad-days" for our liking.

We still must appreciate the "good-days", when they come. For me, saying thank you to those that care for me is not just being polite. It releases stress! Acceptance of my conditions is a constant battle, that I've had now since 2007. And for me, fighting the natural urge to "push-back" when someone wants to help me get off my chair or hold the car door open for me - is hard when it should be easy.

So, thank you to my current doctors and specialists, for helping me with drugs and therapies to improve my states of body and mind - both are "works-in-progress" of course, right folks! Thank you to the nurses and aids, technicians and staff - who've been there tending to me afterwards, when I've fallen into 'ditches' and down gullies. Scratches, scrapes and cracked bones by me. 

P.s.  Say hi to our Dog, Zeus!

Ask The Experts..! (Live-Podcast 9th May)

Transverse Myelitis Association Members? (..this one's for you guys!) Hi folks, I hope this message reaches you - feeling as good as you can be! I thought I might "share" this with you all. Especially if you suffer from 'Neuropathic-Pain'. Remember this podcast is in America/Eastern Standard Time, so make a note in your diaries about your "corrected-time"... ASK THE EXPERT PODCAST SERIES View this email in your browser

Join The TMA’s Ask the Expert Podcast Series on Understanding and Managing Neuropathic Pain on May 9th at 1:00 PM Eastern Time.  Dr. Scott Newsome, DO from The Johns Hopkins Transverse Myelitis Center in Baltimore and Dr. Allen DeSena, MD from The University of Texas Southwestern TM and NMO Center in Dallas will lead the conversation and answer questions from our community. For more information and to register, click here.  What is neuropathic pain?  Why is it different from nociceptive pain?  What causes it?  What are the treatments commonly used? Are there alternative therapies that work? Are there times of the day when pain is worse? If you have wondered about these questions and many more, please join this podcast to learn and understand more about neuropathic pain after a diagnosis of Transverse Myelitis, Neuromyelitis Optica or Acute Disseminated Encephalomyelitis. The goal of this education podcast is to learn from the experts who are focused on research and clinical care of these rare neuro-immune disorders - transverse myelitis, ADEM and NMO. Please submit your questions on this topic that you would like to ask the experts by going to: Google Moderator. If your question is already submitted by someone else, please vote for it so we know which are the most common questions from our community. If you don't have a Google account or don't want to create one, please send us an email at info@myelitis.org to submit any questions you may have. In the subject line, please use "May 9, 2014 Podcast Question". During the podcast, you can interact with the speakers and the moderator through our TMA Facebook page! The Transverse Myelitis Association   ABOUT OUR GUEST SPEAKERS   Dr. Scott Newsome specializes in the care of patients with neuroimmunological and neuroinflammatory disorders of the central nervous system. He has special interest in evaluating and treating patients with multiple sclerosis, transverse myelitis, neuromyelitis optica, and stiff person syndrome. Dr. Newsome works within the division of Neuroimmunology and Neuroinfectious diseases at Johns Hopkins Hospital. He joined the Johns Hopkins Multiple Sclerosis and Transverse Myelitis centers after completing fellowship and he is currently the director of the Johns Hopkins Neurology Outpatient Services and the Neurology Infusion Center.   Dr. Newsome received his medical degree from the New York College of Osteopathic Medicine and graduated with honors.  He then completed his internship in internal medicine and residency in neurology at Albany Medical Center.  During Dr. Newsome’s neurology residency, he was awarded the Golden Apple Outstanding Resident Teaching Award and later was chosen to be chief resident.  He subsequently went on to complete a fellowship in neuroimmunology at The Johns Hopkins Hospital with the support of a Sylvia Lawry Physician Fellowship from the National Multiple Sclerosis Society. Dr. Newsome’s main research focuses on the use of new quantitative clinical outcome measures and imaging techniques in multiple sclerosis. These tools may improve the precision of disability measurements in multiple sclerosis and other central nervous system disorders. Currently, Dr. Newsome is involved in several clinical trials for multiple sclerosis, transverse myelitis, and neuromyelitis optica. He is also serving as chair for the Consensus Conference Committee of the Consortium of MS Centers and is an advisor for the National Multiple Sclerosis Society Clinical Advisory Committee.   Dr. Allen DeSena is currently TMA James T. Lubin Fellow at University of Texas Southwestern in Dallas pursuing a career in clinical and research on rare neuro-immune diseases.  Dr. DeSena attended medical school at Loyola-Stritch School of Medicine in Maywood, IL, located in the greater Chicago area. From there, he went on to complete a residency in general pediatrics in New Orleans, LA at the Tulane-Ochsner pediatric program, and he earned his board certification in general pediatrics in 2009. Following his general pediatrics training, he moved to Dallas, TX, where he completed a residency in pediatric neurology at UT-Southwestern Medical Center in conjunction with Children’s Medical Center-Dallas and Parkland Memorial Hospital. During that time, his interest in transverse myelitis and other neuroimmunologic disorders blossomed, and he pursued further training in those areas. He is the first pediatric neurology fellow to study the rare spectrum of neuro-immunological disorders, with a particular focus on Transverse Myelitis. Later this summer, Dr. DeSena will be establishing a Neuroimmunology Center at Cincinnati Children’s Hospital and Medical Center in Cincinnati, OH.

A BRAND-NEW enterprise!

First, I wouldn't be here now writing this story but for the support and love from my Wife - and our three Sons! They're my everything..






"Glendons Graphics" is the name of my new 'shop'. Hello readers! I hope this finds you feeling as good as you can be. Well, I've been busy in the last few weeks - figuring out software to work with my artful deeds!



My drawing passion began as a hobby, just an activity to pass the time while I was recovering slowly in hospital from a rare medical-condition, Transverse-Myelitis, secondary to Guillian-Barre-Syndrome from an immune-reaction to 'FLUVAX' needle, back in 2007. I used to draw my creations in a smallish-'graph-book' and at a very slow pace. I would try and do one per day, or sometimes it might stretch to two (when my inspiration flowed).



Abstract artistic designs are what I love to create - I get a pure surge of imagination and it flows out through my left-hand onto the page. Sometimes I'll get an idea from just looking up - at the beautiful, amazing night-sky, or it might be a flower that inspires me - nature is the ultimate muse to me.   



It was when I showed my friends what I'd done - they'd say things like; "..Wow, Glendon - you really need to do something with these drawings.." So eventually I built up the courage and I transferred them into a larger format - the "old-fashioned-way", by completely re-creating them, but I also discovered that they look much better in the larger sizes too!

My 'ETSY' shop banner!

I have taken the plunge and opened an online store - selling "Fine Art Prints" of my original drawings! I have big dreams and plans - but at the moment, I'm the designer, the artist, the printer, the packer, the shipper and sender. And that's fine by me too! 

All items are packaged with the utmost care. Prints are first placed in archival safe, plastic protective sleeves with a sheet of cardboard and then inside hard envelope mailers (crush and bend-proof!) I trust you'll find something just right for you! Please, simply 'click' the link below...

https://www.etsy.com/au/shop/GlendonsGraphics 

National Smile Day - 1 April

Hello readers and fellow TM'ers! I hope this reaches you in good spirits and good humour. (Apologies to my American friends for spelling 'humor' with an 'u' in the word - that's how we spell it in Australia). Just a quick little post today - but it's about a big message. SMILING! Put a smile on your 'dial' - for "National SMILE Day today, April 1st. Oh, and pass it on...

Put a smile on your dial for National Smile Day - it's good for you and for the person you're smiling at! Smiling can get good things happening in your brain. Blogger Sarah Stevenson describes the effect of smiling as "a little feel-good party in your brain" (http://bit.ly/1mhmyGk). If you can't think of anyone you want to smile at, give yourself a smile in the mirror. Hug yourself at the same time and the effect is even stronger. OK, so you might look like an April Fool, but who cares if there's no one but you to see?

Cedar Creek always puts a big smile on my dial (..and my puppy Zeus' dial too!)

You might also be interested in checking out the Clown Doctors from The Humour Foundation, an Australian charity dedicated to promoting and delivering the health benefits ofhumour.: http://bit.ly/1fG7qCr

How much do you know about Transverse Myelitis or TM?

 ..I mean, really know?

Hello readers, I hope you're feeling as well as possible today! 

The Brain, Spine & Spinal-Cord - Where all the action happens!

Sometimes, we think we know all about "our" stuff.

And, sometimes we learn something "new", once in a while. I do.

(in fact, I do - all the time!) 

Please read on.. 

By 

Benjamin Greenberg, MD, MHS, and

Allen DeSena, MD

- University of Texas Southwestern, Dallas.

"..an excerpt taken from; The Transverse Myelitis Association BLOG.."

REPORTED CASES OF POLIO- LIKE 

ILLNESS AND ITS RELATIONSHIP TO TRANSVERSE MYELITIS 

News reports from California have recently come out identifying a series of patients, mostly children, affected by a +polio-like-illness with symptoms that can mimic transverse myelitis (TM). Naturally, these reports have raised questions within our community so we thought it would be important to address some of the concerns. First, it’s important to have some background.

The spinal cord is comprised of several different pathways and cell types. Connections from the brain descend in the spinal cord and 'attach' to neurons in the spinal cord that then project out to muscle groups. When a person wants to move their hand, their brain sends a signal down a pathway to a set of cells within their cervical spinal cord and form a connection (a synapse). The signal from the brain activates the neurons in the spinal cord, which in turn, propagates the signal to the muscles of the hands, leading to the intended movement. This pathway can be interrupted in many ways.

Polio is caused by a virus that specifically infects the cells within the spinal cord responsible for projecting out to muscle groups (the so called lower motor neurons). When these cells die the muscles they connect to cannot be activated. Classically, transverse myelitis causes damage to the wires that are responsible for connecting the brain to these lower motor neurons, leaving the connection from spinal cord to muscle intact, but interrupting the signal that was originally meant to activate the pathway. In clinic, we tend to describe this as "wire number 1 and wire number 2". Wire number one goes from brain to spinal cord and wire number two goes from cord to muscle. Polio damages wire number 2 and traditionally, TM damages wire number 1.

The second issue that must be addressed is the mechanism of injury. In traditional transverse myelitis a "confused" immune system inappropriately causes damage to the spinal cord. When the immune system invades the cord there is no virus there to be fought off. In the cases of patients reported from California, a virus directly infects and kills the cells. Any inflammation in the spinal cord is responding to the virus. TM is often a missed diagnosis. Sometimes this occurs because of a lack of vigilance from medical personnel, but sometimes it is because the diagnosis is unclear.  In addition, the problem with diagnosing TM is that there is no single blood or spinal fluid test that definitively identifies TM.  In addition, the spinal fluid markers of inflammatory responses cannot differentiate between an autoimmune response and a response to an infection.

Sometimes people will read that a virus has been associated with TM, but these reports are difficult to interpret. The infection could have been the inciting event but the spinal cord injury was caused by a secondary autoimmune process after the infection, or the association could have been incidental in that the patient had previously had the infection but now has an unrelated process. Also there could actually be two processes causing the spinal cord injury – both an infection-related component and a separate inflammatory component. Finally, the patient could have tested positive for the infection even though they did not have the infection at all (a false positive).  Keeping these in mind, it makes it difficult to interpret many of the case reports regarding infection and TM.  In addition, we must always keep in mind that the viruses and pathogens we do actually know about (and can test for) are a fraction of those that exist in nature, there are likely hundreds and hundreds of viruses or virus subtypes (meaning we know several but not all in a certain virus “family”) that we are not aware of.

Although we do not know the intricate details of the cases in California, the clustering of extremely similar cases in a short time frame is more suggestive of a common infectious cause, likely a virus, that has a tendency to target the same and/or closely similar areas in the spinal cord and, thus, causing similar symptoms.

In a series of upcoming papers, our team at UT Southwestern and Children’s Medical Center has described differences among patients classically diagnosed as having TM. Some of these patients have evidence of damage to BOTH wire number 1 and wire number 2. We are using these features and others to differentiate patients relative to treatment options and outcomes. In California, the public health system has identified a series of polio-like illnesses, where only wire number 2 has been affected. Some of these patients may have originally been diagnosed with TM, but in retrospect this may have been an inaccurate diagnosis. While we do not have specific case details, this is not an unexpected event given the rate of misdiagnosis of TM.

There is a virus that has been identified in some patients - a previously recognized cousin of the poliovirus - that may be the causative agent. It is also worth noting that this syndrome (viral damage to wire number 2) has been described with multiple viruses, including west nile virus. In the end, this is a reminder of the importance for improved diagnostic algorithms for patients and increased research into the world of acute paralyzing illnesses. The TMA and the UT Southwestern/Children’s Medical Center TM program will continue to monitor events and update our community.

News articles talking about this topic:

http://www.usatoday.com/story/news/nation/2014/02/23/polio-like-illness-california/5703827 

http://news.yahoo.com/polio-disease-appears-california-children-074000774.html?vp=1 

http://scopeblog.stanford.edu/2014/02/24/stanford-physician-leading-efforts-to-track-emerging-polio-like-illness-in-california-children 

I hope you enjoyed this piece of information. Please, leave a comment if you wish...

Dedicated to the memory of Paul Checkley

Rest In Peace mate..!

My sympathy, thoughts and prayers go to your partner Melrose, your children and familes. I'm floored to read these posts, about you Paul Checkley. My last moments with you were at the Newcastle High School '81-'83-[30th-year reunion], last year (when this photo was taken)...

Paul Checkley.. (as I will remember you mate!).. Rest .In. Peace..16th Jan 2013

...After a great night of catching up on each others lives over the years and lots of laughter, we ended up eating Kebabs together at the nearest T/away (what else do you do in Newcastle at 4:00AM?)......and solving the world's problems...lol! I will treasure those moments...

Paul. I didn't know you as a man - but the times we had at Newcastle High School - I'm filled with fond memories and laughter and of your kindness-of-spirit - a true quality of a gentleman... ((Happy trails mate..!))

Peacefulness! ..and a BIG thank you to 'Unsung-Heroes' - OUR CARERS!

This is a sample of the mini-wilderness, just a few hundred meters "up the creek", virtually in 'my-backyard'! I choose to come here to zone-out, get-with-the-Universe, relax, un-stress! Where I can listen to mother-nature and get peaced-out! For 30-mins and sometimes longer. Yep, I'm very grateful to have access to this little-paradise in the foothills of Mt.Glorious. It's called a mountain but it's really only a hill, in the 'big-picture' - but when Australia is the flattest-continent on Earth, we'll claim it as a 'mountain'. And the water-coursing through and over the rocks, is called 'Cedar Creek'. If you look carefully you can see my dog "Zeus"-(the Wonder Dog). Finding a space like this has been like getting a daily injection of; "Aaahhh-Yes"!..

Light and Shade contrast in the Creek

In the afternoon sun, she really is mesmerising. At walking pace this spot is roughly 750m from the house 'as-the-crow-flies', and 2km to reach by trail. My dog "Zeus" and I love to go there and make it into a 'voyage-of-discovery' for both of us. It's quite rocky in places and I really have to concentrate, very slowly negotiating my way. I have used the weight of Zeus on the lead to help me stay-up, saving me from a swim!..(hehe). Consequently a typical 'walk-with-the-dog' can take us way more than it seems, ages even. Thank you..

Crystal clear waters of Cedar Creek - and it tastes fantastic!

Although I live on the other side of the world, 'down-under' in Australia, I feel grateful to all the people in my 'sphere' and 'bubble'. The folks who've helped me, get to the point where I'm at right now. I've come a long way in the last twelve months. My health-care professionals have taught me lessons in - Physiotherapy, Hydrotherapy, Tai-Chi, Breathing, Mindfulness, Relaxation. All these coping mechanisms that we can draw from. For self-help, with depression and 'attitude' to life and how we can be taught acceptance. For ourselves, for who we are and what we have. Thank you..

The mid-afternoon Sun splices through the Gum Trees

Family. Our relatives, our Wives, Husbands, Daughters, Sons, Sisters, Brothers, Aunty's, Uncles, Grand-Mother's, Grand-Father's. Thank you. You are the 'wind-beneath-our-wings' every day after day, after day. You see us at our worst - but you are the reasons why we strive to be our best. Then there is the '2nd-family', of medical staff and other Professionals who help those like you me and those more afflicted than us with - 'TM', or 'NMO' and other 'neuro-immunological' conditions. Thank you..

Is it a pair of Angel-Fish swimming? Or, Is it a tree?
It's a rock-formation, trapping leaves!

All the people involved in our 'Spinal-Injuries-Australia' community - our 'employment-options' advocates, and the allied-helpers with home-assist duties, helping us with 'walking-sticks' and 'frames' and 'wheel-chairs' etc. And the Carpenters, the Electricians, the Plumbers, the Refrigeration-Mechanics and Auto-Mechanics building and altering our homes and motor-vehicles to the ways in which we need.Thank you!

Another panorama of beautiful Cedar Creek (near Mt.Glorious), QLD Australia

HIGHLIGHTS - from the "TMA"-website ...this month; 

• Treating Acute Inflammatory Attacks
• TMA Kids
• What We Fund
• Enroll In Clinical Studies
• TMA Brochure
• New Member Packet
• Support Groups 

Read More →

p.s. Please! Please! Please! --------- I invite you to subscribe to my blog. It's easy - just 'click' on any one of the links in the ---"Subscribe"--- parts of the sidebars! ---OR--- if you would like to become a 'member' of ---'Bloody Wishful Thinking---' you can just 'click' on the "become a Member" link! ------------------------- and I'd be very obliged indeed..

Cheers,
Glendon.. (Goat Dodders)

All for one and one for all: a no-fault compensation for vaccine reactions?

I was surfing the interwebs - and came across this comment from;

Professor David Isaacs <http://theconversation.com/profiles/david-isaacs-7752/profile_bio  

It's a few years old now, but relevant and  I have to credit "The Conversation" —  and include their logo — with a link back to the specific article URL on The Conversation website. 

So here it is;  and the link;

http://theconversation.com/all-for-one-and-one-for-all-no-fault-compensation-for-vaccine-reactions-5837 

Reports on people suffering an adverse reaction to immunisation focus on the suffering of one over the safety of many. But immunisation benefits the whole community so we should all bear responsibility for those few who experience an adverse reaction to it.

Immunisation works and to the extent that we no longer see people suffering from diseases we immunise against, it is a victim of its own success. Until polio was effectively eradicated through the use of a vaccine, it was not uncommon to see its residual effect among the population. Such sights often motivated parents to immunise their children.

Another worthy example of the positive impact of immunisation is the story of measles in Australia. Only about half of all Australian children received measles vaccines in the 1980s and the illness circulated freely. From 1976 to 1995, 94 children (nearly five children a year) died from severe measles pneumonia or encephalitis (brain inflammation).

But since the 1990s, the proportion of children immunised against measles has risen to over 90%, and there’s only been one death from the illness since 1995 (in 2004). What’s more, there are now only occasional cases of measles in Australia imported from overseas.

About one in every thousand children who catches measles will develop encephalitis. This is fatal for about 5% to 10% and leaves 15% with brain damage. In contrast, only about one in a million children immunised with live measles vaccine (or the measles-mumps-rubella vaccine – MMR) develops encephalitis, which is one child every four years.

AJ Cann

In Australia, immunisation is not and doesn’t need to be compulsory because high rates of immunisation are already maintained voluntarily. Most parents recognise that the benefits of measles immunisation far outweigh the risks. Immunisation benefits individual children and the community because a large number of immunised kids means those who have contraindications to measles immunisation, such as those with immune deficiency or whose parents are conscientious objectors to immunisation, are also protected.

This protection is called “herd immunity” and it means when immunisation levels are high, a virus can no longer circulate so even unimmunised children will not be exposed and catch measles.

But suppose a child is unlucky enough to develop severe brain damage as a result of measles immunisation. Their family would inevitably incur out-of-pocket expenses for special needs, such as wheelchairs and modifications to their house and car. Is it fair that a family suffers because their child was inadvertently injured, through neither their fault nor health-care workers', by a vaccine endorsed and paid for by the community?

By 2010, 19 countries around the world had accepted that society owes a duty of care (or of gratitude) to the very few individuals damaged by a vaccine and had introduced no-fault vaccine compensation schemes. Germany has had such a scheme for 50 years; New Zealand, the United States, Britain and most European countries have compensation schemes – Australia does not.

So what are the barriers to introducing a no-fault compensation scheme for vaccine injury? Would large numbers of people suddenly try to get vaccine compensation? This has not been the case in other countries, which generally appoint expert committees to consider whether cases of possible vaccine injury justify compensation.

Overseas schemes are funded by one of four methods:

• a vaccine tax;
• special funding for the scheme from general taxes;
• industry contribution; or
• compensation as part of a broader national compensation scheme (as in New Zealand).

In the United States, where compensation is funded through a vaccine levy, over 2,500 claimants have received compensation since 1989 and the compensation fund is in surplus by about US$3 billion.

Australia is proud of its emphasis on justice and the principle of giving people a “fair go". It seems only fair someone injured by a vaccine offered and accepted in good faith to benefit the community should be compensated by that community. It’s certainly a better solution than having people not immunise their children and so expose the whole community to a virus.

High rates of immunisation reflect public trust in its benefits and such trust would only be strengthened by the knowledge that the community will look after the few unfortunate casualties of a highly successful immunisation program.

DISCLOSURE STATEMENT

David Isaacs does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.