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Joodles

MEN1 sufferer

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I just read an article about a 37 year old lady with MEN1 which I thought I would share with you all. It's very sad.

 

http://www.dailymail.co.uk/news/election/a...edged-fund.html

 

Joodlesx

 

:) Oh my God, that is so sad. Health care is so AWFUL across the globe........................

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That is very sad. If you come across a petition site or a way to help her let us know.

 

Hildegard

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No, healthcare in the UK does not pay for everything. My understanding is that to make everything "fair" for everything outside of primary care they take the cost of a treatment and multiply it by the numbers of years of additional high quality life it will gain you, divided by the number of good years you have. They call this a "QUALY." If it costs more than $50k a year (or something like that -- I don't remember the actual number), the treatment is denied as too expensive. Most advanced cancer medications don't meet the cutoff, so they have been making exceptions on a drug by drug basis. Her drug hasn't gotten through the bureaucracy yet, so she is SOL. I suspect this is why Cushings folks in the UK have such a hard time getting testing and treatment and GH.

 

This is what the treatment "boards" on the exchanges in the US health care bill was modeled after -- it is effective at lowering costs -- of course at the expense of those who have uncommon diseases who don't have good lobbying organizations. If you don't have a good lobbying group, and your illness is weird and the treatment expensive, you can eventually expect to pay on your own.

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I know it's an emotive issue, but in any National health service there has to be limits. This lady has also previously had IVF treatment but the article didn't state whether that was NHS funded or if they paid privately for it - IMO services like IVF and a few others that I don't really want to get into an argument about should NOT be paid for by taxpayers but they are.

 

The difference in this story is that it's an argument about a life extending drug NOT a life saving drug - plus the drug company hasn't applied for it to be used in the way this lady's consultant wants it to be used so they probably can't give approval for it. I know it's a very emotional story because she has young children but would you have a different attitude if it were a 90 year old wanting to extend their life for maybe just a few months? They're using the argument that she wants to see her children grow up, well we all do but sometimes that just isn't on the cards for us....the truth is that most of these types of drugs only offer a few months extension to life, she wouldn't get to see her boys grow up even if given the drug cost-free by the NHS.

 

She is a brave lady and I DO actually hope she ends up getting the drug - there are many things they could cut in order to fund these drugs but lobbying groups would be up in arms about any kind of cuts to services so the status quo continues between NICE, NHS trusts and patients' needs.

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i have to agree with Melanie im afraid this drug is not going to make life changes and we need money spend in so many other areas other than the same 3 i all the time here in the uk its either cancer diabetes or heart disease i feel not enough money is spent on rare or other research we have came so far with cancer and we are leaders in the world could we not be leading in other areas? sorry if this sounds tough for some but i sympathize with any one who has cancer and any other life threatening illnesses for that matter you cant just put all the money in one pot. I also cant help feeling this is another story that has been highlighted because of our elections at the moment cant help thinking some people are being used in the wrong way. I have also to agree with Melanie that IVF should be paid by themselves im not totally agreeable with the practice and i havent read about many pensioners being given the cancer drug no one life is any more important than another. If i had cancer in my family or especially men 1 genetic i think i would have thought twice about having any kids thats just my opinion sorry if i offend anyone .

 

 

jo

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