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Make blood cancer visible

Yesterday I went to the installation, which some of you may have read about, made by the Make Blood Cancer Visible organisation.  It is very well sited in Edinburgh, just next to Princes Street.  While I was listening to the stories, there were plenty of people looking at the figures and talking about them.  It made me wonder how many of these people were blood cancer patients like myself.  Those of us who are lucky enough to be doing well on TKIs are probably quite used to friends saying "you don't look at all ill" or similar things.  I really hope that this installation, and other publicity, will help raise awareness and understanding of CML and all the other blood cancers.  A very big thank you to everyone who helped to put it together.

If you want to know more, you can read about it here: www.makebloodcancervisible.co.uk

Olivia

Just wondering, how CML patients are treated, in terms of social benefits, in the UK? Sprycel is utterly expensive and is not fully covered in Hong Kong's public medical services, I am planning to move to US soon. (Not to mention how terrible the coverage healthcare insurances in HK provide)

UK patients do not have to pay for healthcare at the 'point of need'. So we, as CML patients are very fortunate not to have to pay for expensive TKI therapy or any other treatment. We do have a contribution to pay when in work... it is called the National Insurance contribution and every person who is working and paying tax has a small amount taken out of their salaries. Currently, the National Insurance Contribution is not a 'hypothecated tax' so it is not used to directly fund the National Health System. Nevertheless, CML patients resident in the UK have access to all 5 TKIs. For those not able to work, the state provides for their healthcare.

Other EU countries also have a requirement for their citizens to contribute to health insurance apart from that provided by the state. I don't know the details of each Eu state's provision of healthcare, but I think the US system seems to be the most challenging and expensive for individuals.

Sandy

It is nice to hear patients in the UK could be well supported, I sure hope HK could renew its medicine regime ASAP and include 2nd generation TKI into its public healthcare system. Taxes are relatively light in here, I guess this is the price we have to pay.

I have not so much knowledge in the US system either, would love to hear somebody out for more information!

Josiah