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