Change in Medicare in the US

[Paulagcl]

Long story short, I won't have access to Kevara any more thanks to what is now a slow but sure downgrade in the US health system. It was working great for me so who knows what happens now. Totaly frustrating and depressing.

[PMRpro Ambassador]

Sorry to hear that - but what happens now will be the same as happens for everyone with PMR in the UK: the right dose of prednisone.

[Paulagcl in reply to PMRpro]

Yes, I know, but I tapered off prednisone and was hoping not to have to take it any more. It's a far worse drug. Kevzara targets just the specific gene causing PMR. Prednisone shut down the whole immune system and had other bad effects.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Kevzara targets just the specific gene causing PMR

Not sure that’s true, but PMRpro can explain why a lot better than me.

[PMRpro Ambassador in reply to Paulagcl]

It isn't targeting a gene, it is stopping the inflammatory substance, a cytokine called IL-6. occupying the receptors on cells that it needs to cause inflammation so the IL-6 can't get a hold on the cell. Pred doesn't actually shut down the whole immune system - it damps it down and once you get to the lowest effective dose, usually well under 10mg, the effects are far less. I've been on pred for 16 years and Actemra, which is similar to Kevzara, for 2 and a half. I can't get entirely off pred, still at 7mg, but no problems with it at all.

[Paulagcl in reply to PMRpro]

Thanks -- you explained that to me once before but I forgot it.

The healh care system is going to hell here. Doctors are having to hire an extra employee to handle all the paperwork. Medicare has cut payments so it's a miracle any of them take it -- many don't. Almost all psychotherapists don't.

[artfingers]

I know, I was shocked when I was told Kevzara is cutting off the Patient Assistance program as of Jan. 1st. I too was nearly off pred and doing really well, feeling back to normal almost. All because this stupid new Medicare program allegedly to help folks only pay $2,000 out of pocket a year for prescriptions. So what do insurance company's do? They can just deny the expensive drugs they don't want to pay for and that opts them out of it. Then people have to pay over $80,000 a year for Kevzara or Humira or any other expensive drugs. It is WORSE now. This new Medicare program (part of the Inflation Reduction Act) is terrible.

As an aside, I also am now on Ozempic which I can get in Canada legally by prescription for $175 a month (U.S.) as opposed to $1,200 a month in USA. This is the other part of the problem in America. Big Pharma charges huge amounts for "specialty drugs" here. In Germany Ozempic I saw was $59 a month!

[PMRpro Ambassador in reply to artfingers]

I've just googled that - and the claimed cost of Ozempic in Germany ranged from 59 to 338 dollars depending on the financila article! However - you are right. The reason though is that in state funded systems there is a big punch on the part of the negotiators to get prices lower. In the US, all the insurers work separately, bit like the UK now doesn't have the clout the EU does ...

[Paulagcl in reply to artfingers]

It's a terrible, shameful situation. My dr said the doctors are all worried about how they are going to handle the Medicare situation.