God news, bad news

[Dryhill]

I received some good news and some bad news today. The good news is at long last funding has been approved so I can have RTX treatment, the bad news is it will be one session followed two weeks later by another session then the whole thing repated two or three months later. My Rheumy was pushing for me to have four sessions at weekly intervals, as this is supposed to be the best treatment that is what I also wanted. Aaaah well the pen pushers and accountants win yet again!

Oops the title was supposed to read GOOD NEWS, BAD NEWS but I do not know how to change it.

Jim

[Sangye]

Congrats on getting the rtx approved. What was their reasoning for the bizarre protocol? It's not based on any research.

Last year I tried a 2-infusion round for the first time. It didn't work. We conceded that after 2-3 months. Then I had to do a 4-infusion round. I get a very uncommon side effect from rtx--knocks me totally flat for 6-8 weeks. As soon as I got on my feet from the first round it was time to do the 4 infusions. Man, that was a long spring and summer.

[vdub]

Really strange that the bureaucrats would/could go against the advice of specialist, particularly on a rather rare disease. I am lucky to have pretty decent insurance and get to be involved on most of the decisions concerning my treatment. BUT, at least you are getting some treatment.... WhoAh!

[KathyB]

Wow, strange indeed. What's your insurance company? My initial Rtx protocol was also 4 in 4 weeks. However, this next round (after 6 months) is going to be the 2 in 2 you mentioned. I thought a lot of folks were doing this -- ?? But maybe not for first round. My insurance (Anthem BC/BS) got fussy with me over the $3,000 cost of the anti-fungal med I took for pneumonia, but gave in. Otherwise, they have been great (knock on wood!).

[vdub]

TriCare. They are really, really good. It seems they actually do care. When I call, I don't get menus or run-arounds. I get to talk to real people who are very nice. They have never declined me for anything requested. In return, I try to tow the line and not get abusive on what is being done -- I often decline some tests or appointments that I don't feel I need to have. I really try to save them money. But, at the same time, I am saving me money since I pay for 25% of the bill, so my attitude is not totally altruistic....

[freakyschizogirl]

Nothing surprises me Dryhill when it comes to the NHS and PCT's who do the funding. It very much depends on where you live on how much money they will allow for certain treatments. I've had the 2 rounds (tho i've heard 4 is best, considering my weight into this too...). I find out next tuesday if its worked for me.

I know its hard to see the positive but you've got the funding. If two rounds doesnt work it'll be easier for your doctors to press for 4 infusions instead.

Keeps us up to date and let us know how you get on. Have ya got a date yet for your first infusion?

[Dryhill]

Lots of questions and comments to my thread so I will answer per person.

SANGYE - I doubt it has anything to do with best treatment, but more to do with how much money is available to the hospital. I suspect that doing it this way will push some of the treatment into the next financial period (quarter or full year).

VDUB - In the UK government money is very tight plus the Tory part of our government would really like to scrap the NHS, so keep cutting their budget. Hence my hospital is probably running out of money (they have just spent £14m on improvemnets).

KATHY B - I live in the UK and do not have private medical insurance so use the NHS. Upto 2010 I had not had any major illness so why should I ever need anything better than the NHS? Now with hindsight perhaps I should have joined BUPA or something similar, but they will not want me now.

FREAKSCHIZOGIRL - I know my doctor really pushed hard to get me the four dose treatment, and at one point I thought he was going to win. Ahh well time will tell.

Thank you everybody for your comments, I will let you know how things progress.

Jim

[pwc51]

[QUOTE=Dryhill;54620]
KATHY B - I live in the UK and do not have private medical insurance so use the NHS. Upto 2010 I had not had any major illness so why should I ever need anything better than the NHS? Now with hindsight perhaps I should have joined BUPA or something similar, but they will not want me now.

Hi Jim - I was on private health insurance (through my work) until it came to RTX when I was switched to the NHS as I was advised the insurance would not cover that cost! (we did not test it to find out if, in reality, they would!)

Peter

[drz]

It seems that reluctance to fund the best treatment is a rather universal trait among most of the payers, especially governmental programs, like Medicare and Medicaid in the USA even though it is often short sighted economy. Most of the time the denials end up costing everyone more money from the extra time spent, unnecessary appointments, and often creating a worse medical situation that is much more expensive to treat. I have encountered this many times with insurance companies and I also see this happening a lot to people I know especially when funding gets tighter and it is very frustrating. I bet the stress of dealing with the payees and the extra paper work probably also creates a huge extra medical cost for them.

[Al]

It seems that reluctance to fund the best treatment is a rather universal trait among most of the payers, especially governmental programs, like Medicare and Medicaid in the USA even though it is often short sighted economy. Most of the time the denials end up costing everyone more money from the extra time spent, unnecessary appointments, and often creating a worse medical situation that is much more expensive to treat. I have encountered this many times with insurance companies and I also see this happening a lot to people I know especially when funding gets tighter and it is very frustrating. I bet the stress of dealing with the payees and the extra paper work probably also creates a huge extra medical cost for them.

Yeah, the problem is that WG is an expensive ailment to treat, but it is relatively rare, so that much more dealing with unknown aspects, which is tough on the bureaucratic system. My heart bleeds for them.

Al

[Psyborg]

Yeah, the problem is that WG is an expensive ailment to treat, but it is relatively rare, so that much more dealing with unknown aspects, which is tough on the bureaucratic system. My heart bleeds for them.

Al

The bureaucracy is being expanded to meet the needs of the expanding bureaucracy.

[Dryhill]

The bureaucracy is being expanded to meet the needs of the expanding bureaucracy.

Bob, never a truer word spoken, or in this case written. Try and get your hands on an history book called "English History 1914 - 1945" by A. J. P. Taylor, the opening page tells you all about a utopian country with very litle government intervention. That utopian country was Great Britain upto the eve of WWI. Pity one can not turn the bureacratic tide back.

Jim

[Al]

Jim and Bob: I can't remember who said the following remarkable thing in this regard, something like, Any organization, whether of government, private corporation, or religious institution, should be required to disband two years after its inception. The point is that, within a short period of time, said agency no longer does the work it was originally chartered for, but exists only to make itself larger. Hey, our very cells subscribe to apoptosis for precisely that reason, so why not bureaucratic hierarchies as well?

Al

[Lightwarrior]

Jim and Bob: I can't remember who said the following remarkable thing in this regard, something like, Any organization, whether of government, private corporation, or religious institution, should be required to disband two years after its inception. The point is that, within a short period of time, said agency no longer does the work it was originally chartered for, but exists only to make itself larger. Hey, our very cells subscribe to apoptosis for precisely that reason, so why not bureaucratic hierarchies as well?

Al

Excellent point Al

[Geoff]

Hi Jim,

I go to the same hospital as Sam (i.e Addenbrookes) and have just been notified of my first 'go' with RTX. Like Sam its for 2 infussions about a fortnight apart.

I see that Sam has just been told that she is 'clinically in remission' and so I am optimistic that the same will work for me. One thing we do know about this crazy illness is that its' different strokes for different folks'. Hold onto your hat and I hope the infussion goes well for you.

[freakyschizogirl]

I've been told many times positivity breeds positivity. RTX IS going to work for you too. xx

[Dryhill]

Thank you Geoff and freakyschizogirl for those positive comments. I start my first infusion this Thursday.

Al, your comments about organisations existing only for their own ends, reminds me of a series of science fiction stories. The hero of the stories belongs to a galatic orgainsation whose job is to stop any person or organisation becoming too powerful, to the point where he finishes up killing his boss because he became all powerful. Perhaps we really should have something like that in our so called democratic governments?

Jim

[Al]

Thank you Geoff and freakyschizogirl for those positive comments. I start my first infusion this Thursday.

Al, your comments about organisations existing only for their own ends, reminds me of a series of science fiction stories. The hero of the stories belongs to a galatic orgainsation whose job is to stop any person or organisation becoming too powerful, to the point where he finishes up killing his boss because he became all powerful. Perhaps we really should have something like that in our so called democratic governments?

Jim

I've thought about that, Jim. When I was about 15, I wrote a short story, to the effect that anyone who aspired to have "president" in his or her title knew ahead of time that it was a short-lived business--literally. After the term was up, the lucky candidate would not just step down, but would step into the abyss. My teacher at the time didn't like it, but I still think some form of term limit is advisable, and not just in government. My own modest proposal would be to have legislators (or corporate directors) serve along the same lines as juries--that is, by lottery. When your name comes up, you serve--say, for two years, for, perhaps, for ten dollars a day. If you are actively working on a piece of legislation, you get a voucher for lunch as well. Seems like a good idea to me. At any rate, the idea that after a certain period the institution no longer serves its original purpose but exists only to make itself larger clearly is the very definition of cancer.

Al

[Jaha]

Good news, I guess! My insurance company just approved 2 infusions of RTX. I am scheduled however, on my Birthday for the 1st one, guess that's the bad news. Just looking to have maybe some remission here. Life goes on and thank goodness!
Jana

[drz]

Good news, I guess! My insurance company just approved 2 infusions of RTX. I am scheduled however, on my Birthday for the 1st one, guess that's the bad news. Just looking to have maybe some remission here. Life goes on and thank goodness!
Jana

Congrats. Good luck with the treatment and best wishes for success.:flapper::thumbsup:

[Dryhill]

Good news, I guess! My insurance company just approved 2 infusions of RTX. I am scheduled however, on my Birthday for the 1st one, guess that's the bad news. Just looking to have maybe some remission here. Life goes on and thank goodness!
Jana

Congratulations, I hope all goes well for you.

Just had my first infusion, started just after 9am and finished a little after 3:30pm! so do take plenty to read, crossword puzzles and DVD's (my hospital could supply a good quality DVD player and head phones so I only had to take the films I wanted to watch). Look on the bright side you will not have to go to work on your birthday and all you have top do is sit around while the nurses look after you.

Jim

[Dryhill]

I've thought about that, Jim. When I was about 15, I wrote a short story, to the effect that anyone who aspired to have "president" in his or her title knew ahead of time that it was a short-lived business--literally. After the term was up, the lucky candidate would not just step down, but would step into the abyss. My teacher at the time didn't like it, but I still think some form of term limit is advisable, and not just in government. My own modest proposal would be to have legislators (or corporate directors) serve along the same lines as juries--that is, by lottery. When your name comes up, you serve--say, for two years, for, perhaps, for ten dollars a day. If you are actively working on a piece of legislation, you get a voucher for lunch as well. Seems like a good idea to me. At any rate, the idea that after a certain period the institution no longer serves its original purpose but exists only to make itself larger clearly is the very definition of cancer.

Al

Al, when I was about 15 I wrote a long story where the hero was a criminal who became so powerful he took over Great Britain. Funny my Engish teacher did not like that story either, they just do not like anything that does not conform to the "norm". Perhaps both our teachers are looking down on us now and thinking "they got what they deserved"?

Jim

[Al]

Al, when I was about 15 I wrote a long story where the hero was a criminal who became so powerful he took over Great Britain. Funny my Engish teacher did not like that story either, they just do not like anything that does not conform to the "norm". Perhaps both our teachers are looking down on us now and thinking "they got what they deserved"?

Jim

Dunno, Jim, but I'm thinking, whatever the end result, I'm not likely to run into a lot of my former teachers on the other side of the Gates....

Al