Cindy left me a couple of comments yesterday and I thought I would bring them out onto the front page to answer.
Cindy said:
"I'm sure you're aware of all the arguments over healthcare here in the US..Obama wanting government run & most of us not wanting it. When you mention how your husband wasn't approved for SCT, it makes me feel this way all the more..yet..it's good you can get the Velcade. Revlimid did me better than the SCT. It's so hard. My oncologist was in UK several years ago at a MM Seminar. If I recall correctly, discussion about the timeliness of getting an MRI was discussed and my doctor commented that in the US, we would not accept such a delay. The UK speaker said, "well, it's a matter of expectations then, isn't it?" He meant that we expect more. What is your thoughts of healthcare...US vs UK kind??? I do not care for Obama & this administration at all...they tell so many out & out lies that I just don't trust them. I've never seen a President LIE so boldly as Obama...and then people seem to not care or believe him!! It's scary quite honestly! Thanks for listening...;)"
Well, I have to say up front that I am very much pro-Obama. I think it is fantastic that the US finally has a representative president who is trying to do all he can to help the less-advantaged members of US society. It's p-ing off the business men whose only interest is profit - and they are no doubt behind a lot of anti-Obama propaganda. I am puzzled by the promotion of the individual which seems to dominate so much US thinking. How can anyone believe socialism is wrong? Surely government should be about equality of opportunity and assisting those who find themselves in poverty to get access to work / healthcare / food? I realise I am wading in deep political mud now! Cindy has probably stopped reading!
On the subject of healthcare, I wrote that FL is not eligible for a stem cell transplant under NHS rules. But we absolutely accept that! If we wanted to, we could pay for him to go to a private clinic and no doubt BUY a SCT, but we don't believe that is the right thing to do. If we are refused Revlimid (the next drug in the MM hierarchy) it will be because the NHS has calculated that the potential benefits to FL are too small to justify the cost to the state. A logical analysis will have been carried out by health economists to reach that decision. And we accept that. But if we didn't, we have the choice to "go private". In the States, there is NO CHOICE. If people don't have money or insurance to pay for essential medicines, they die. There is no assessment of cost / benefit / the public good. It is straightforwardly about the individual and their possession or lack of money. In the same way, even though I could probably afford it, I would not pay for my kids to go to a private school - I support the state system.
Cindy, you must think we are strange strange people. But FL and I already doubt that funding Velcade at £3000 a pop to keep one man alive for a few extra months can be justified when the same money would pay a nurse's wages for two months (per dose of Velcade!) That nurse could care for perhaps 8 people?
FL is just one man. I love him dearly and I want him to live forever. But in the end we would rather the NHS spent its money on patients who have the potential to be cured rather than prolonging the existence of a man with a terminal diagnosis, with a deteriorating quality of life. We're weird like that.
Update:
FL is slowly coming back above the water level. He hasn't had Velcade since last Thursday and yesterday was the first day he felt well enough to go outside and breathe fresh air. He ate a little bit of dinner. He slept a restful sleep in bed instead of on his chair. He smiled. He read a newspaper. He cracked a joke. He hugged me.
Really, it is all about his quality of life rather than him enduring a miserable life for longer.
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14 comments:
Very thought provoking, often people this close to a situation find it hard to put into perspective the wider issues - you express this so well Roo.
I totally agree about the quality vs quantity of life thing - even if it is so very hard to face. Enjoy those hugs.
Go girl, poltical mud or not!! I'm with you 110% and more. What is so amazing about you and your FL is that you can hang on to these principles in the face of his illness. I'm so proud of you and although I'm just a blog reader and not a proper friend, I'm glad to have known you just this little bit. I do pray that you will have quality and quantity of life together.
Much Love and support, Janey xx
I think you may be strange, but I agree with every word you write, and I'm deep in the political mud with you. I've never been tested the way you have, but I hope very much that if/when I am I will have the courage to stick with the principles you so clearly express. I suppose I should declare a conflict of interest in that I work for the NHS - a creaking institution, but it's still hanging by its fingernails to "from each according to his ability, to each according to his need". I can't imagine working in any other system. I think that what you have written encapsulates what I think of as justice, which I believe has to be set against the autonomy of the individual when decisions are made. My very warmest respect and wishes for you both are winging their way up North.
Thanks for posting this response to the US comment. I get so frustrated with the uninformed on this issue. Am always glad when my UK and Canadian friends speak up!
This is a wonderful robust defence of the national health service. I salute you for your principled, well-thought-out stance in the light of your personal situation. I too find the American fear of "socialism" very hard to understand, but I think it just has a different shade of meaning over there and it's always hard to understand other cultures without knowing exactly how they got to where they are.
Well said and so glad you decided to bring the comments out on you blog. I worked as a medical secretary in Oncology for 10yrs and I always defend our NHS It's not perfect but it is caring and all involved do their very best. And I agree it's about quality of life not the length of life. Jan
I jst want to say I think you are amazing and I totally agree with your comments.
Andrea, down in North Yorkshire.
Well said! I'm becoming more and more of the opinion that the Us isn't the Land of the Free, but the Land of the free-for-all.
Roo,
Wow. What an eye opener. In our case, since we have always had to pay for our own insurance(Tim is self-employed)I did not have a policy that paid for prescriptions.
When you have individual insurance that is not under a group, it is unaffordable for most so I could not carry the top of the line coverage. I foolishly thought this just meant I had to pay for my daughter's very infrequent antibiotics. When Tim was dx'ed, I found out the hard way this included all chemo. Tim's IGG was 10000. I was hysterical. I thought he was going to die and it was all my fault for not reading the fine print. His doctor got on the phone with the ins. company and literally begged them to cover the meds explaining that this man needed chemo now. No dice. Luckily, a law was passed in NJ some years ago whereby if you have always had insurance and it has never lapsed in a certain amount of years, you can change ins. companies and the new company cannot deny coverage for pre-existing conditions. I changed companies and the girl who signed us up for the policy told me on the phone they would be covering all his chemo and transplant if he was to have one. I got off the phone and wept.It is so sad that when you are dealing with this MM nightmare and any medical disaster in your family, so much energy has to be spent on financial issues,
especially health insurance. Tim's doctor told us that from where he stands, health insurance companies rule our lives more than most people realize. I get that now.
Hope FL is feeling better. I LOVE this new baby sweater you have done. The yarn is beautiful!
Denise
"We're weird like that."
Weird and friggin awesome! What a selfless view...I am so impressed. As a relatively young American who struggles to associate with any political party, I am thankful that that the status quo is being challenged. I wish individuals and communities would bind together and support the common good rather than reliance on the state, but that may not be feasible these days as people become less and less connected. I must say I do struggle to understand why, me, a middle class american gets access to health care while my sister who serves tables all day on her feet does not. She has the harder job....I just happened to go to college and get a white collared job. How's that for fair?
This post simply reinforces how very much I admire and respect you
I am forever grateful for state system.
Exactly one year ago I was freshly graduated from university with Master's degree and had two healthy sons, 3 and 4 years old. Then suddenly, after a psychological tests, both of my sons were revealed to have severe disabilities. Younger one is autistic and older has dysphasia.
I was a single mother and I had to leave my day job to be able to focus on my son's rehabilitation. My local council is paying me an allowance of £290 and my sons recieve monetary support from state. I would not be able to do this without state support. It is 15% of what I would have earned in my job, but I'm very grateful.
If I lived in US, and had to pay for speech therapy, music therapy, hospital fees, my sons would not have future. My youngest would end up in an institution for the rest of his days, and that is not a future any mother wants to see for her baby. Because we have public healthcare, he has hope.
I live in the US and have a great group plan, which is dependent upon my ability to work. When health care coverage is tied to a job, it's a terrifying ride. The poor economy has caused so much job loss, which also means no health care coverage. I'm too young for medicare and not poor enough for medicaid. I don't qualify for disability. If I lost my job, I couldn't afford to pay for my insurance, house, car and other expenses while I sought other work. You can ask anyone who knows me. I am more afraid of losing my insurance than I am of the myeloma.
Just another American, three years later! to disagree with Cindy. Obama has not lied, and I don't really understand why some people think he has. How I wish we had a NHS here --
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