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Saturday, 27 April 2013

World Autoimmune Arthritis Day WAAD - Start Talking

If you look at the funding for autoimmune diseases you see that the money allocated is unequal to the impact this group of diseases has on health and healthcare spending.  This may be due to a lack of awareness on the part of the public and the medical establishment, and also to the weak voice of those who deal these illnesses. Part of the problem is also that getting a diagnosis takes years for many of us because the tests are inconclusive.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7762 million this year (2013) compared to $872 million for autoimmune disorders.   

So the number of cancer diagnoses is equivalent to 20% of autoimmune diagnoses and yet autoimmune disease gets only 11% as much money as cancer gets for research. 


  Comparison of incidence and research funding   
Cancers and Autoimmune Diseases

Musculoskeletal (MSK) disease is highly prevalent and affects 1 in every 2 people in the US.  Despite this it receives only 2% of the National Institutes of Health (NIH) budget.  Some of the autoimmune diseases included in the MSK category are rheumatoid arthritis,ankylosing spondylitis, psoriatic arthritis and juvenile arthritis.

If this looks like a problem in the US imagine how difficult the problem is in countries where there are fewer resources available in healthcare and by some reports I have read, the same incidence.

For these reasons WAAD (World Autoimmune and Arthritis Day) sounds like a great idea to me.  It's a chance for people and groups with an interest in or a shared diagnosis of autoimmune arthritis from all around the world to get together and communicate online in the chat sessions or the informal chat of the lounge.  There is also a great opportunity for all of us to learn from the downloadable presentations,information sessions and blogs.

I'm hoping that we can all take information from this virtual convention and use it to spread awareness among our friends and also in the medical profession.  It would be great if our efforts to do this would spread like dandelion seeds around the world.

                        Dandelion (El Alamein) Fountain, Sydney, Australia

If you want to participate this is what you do.  Go to the site http://worldautoimmunearthritisday.org/expo/. Once you are there scroll down to sign up at the lower left. Questions will be appreciated.

Another issue around awareness and funding may be that  75% of the people with autoimmune arthritis are women who often do not 'look sick' . The variety of autoimmune diseases also works against us, but we will be stronger when we can speak with one voice.  

So let's start talking!!

Having a virtual global convention that lasts for a full 24 hours in every part of the world is a good step towards uniting our many voices.


11 comments:

  1. Thank you for this fantastic post about World Autoimmune Arthritis Day! It's going to be such a momentous occasion for all those with autoimmune arthritis diseases and for all their friends/family as well. With over 35 organizations participating, I do in fact envision awareness spreading just as you stated: like dandelion seeds in the wind. I hope everyone will tell all their friends to be sure to register and attend as well; 2013 is truly going to be THE YEAR OF AUTOIMMUNE ARTHRITIS AWARENESS! :)

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  2. Great post Anet! Thank you for writing it, I just shared it on G+ and twitter. I will share it on Facebook later on as well. My computer doesn't want to cooperate with me tonight!

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    1. Thanks so much for sharing the post. I need to learn more about G+. It's great to see the pluses in the stats.

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  3. Great post, thanks for letting us know! I just read through many of your posts and you have such great, useful information and advice. I'm adding you to my blogroll so others can read too. :) Take care!

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  4. Thanks so much for adding me to the blogroll. I am enthusiastic about WAAD and hope it is a big success. It's all done by volunteers

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  5. This is great, Annette - and confirms my suspicion that when it comes to funding, AI disease is indeed the poor cousin to cancer research. Cancer is dreadful and often swift, but AI disease can feel like a slow death some days (I am having one of those days).

    I think things like this conference are a step in the right direction. I have signed up and hope to attend. A big problem for me, and I suspect many with AI diseases is having the brain power to process and navigate new things. I find signing up for a couple of blogs can take me a while to integrate into a new routine. Going to a virtual conference where there are times to navigate is another thing when one is having to rest so much. I feel like I have half a dozen good hours a day, and some days, it feels like I have to rest half of those.

    The point of my rambling - I knew there was one - is that this is the very reason why we have difficult organizing and fundraising when some days we have difficulty getting out of bed. It's a problem that frustrates me no end, especially days like today, when at 46 yo I feel like someone twice that age.

    I hope that scientists will get behind us, as there are too many young people that are losing their lives to these diseases.

    Blessings,
    Jane

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  6. Thanks Jane
    I could hardly believe the extreme contrast in research money but the figures come from a recent US government paper! The conference does have a lot of potential. The "Ask AN Expert" feature sounds great. Maybe you can send all of your questions in.

    When I read what you said about the brain fog it made me think of public transit and crowded streets. Navigating physical surroundings when you feel less than fully operational is also a problem.

    I can imagine a person wearing stylish pumps and totally groomed making a pitch for funds in front of a group but that is not my face on the person. Maybe working behind the scenes we can be effective? Your words and pictures are very powerful.

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  7. Wonderful post!! I've linked to it in my post today at http://lifegoesonwithra.wordpress.com/2013/05/02/the-myth-of-morning-stiffness/. Thank you for being such a great voice for those of us with RA!! I look forward to reading your posts!!
    Cheryl

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  8. Thanks Cheryl. I appreciate you linking to the post and giving WAAD more exposure. It is a huge undertaking for any group, and a lot of work.
    I enjoyed your post too.

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  9. The link for funding figures is http://report.nih.gov/categorical_spending.aspx
    In the post "poor cousin" links to that NIH report. I linked to sites in the post to support the figures.

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  10. I guess good work by the WAAD, helping many.

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