@gmdb

People in the USA have some of the same obstacles. Doctors can prescribe whatever they wish but getting an insurance company to pay for it is another matter. The "exceedingly cautious bureaucratic system" is such that newer medications have to be "FDA approved" for the condition being treated. Our government is the entity that approves medications but doesn't control how they can be prescribed. However, an insurance company can refuse to pay for a medication the isn't FDA approved for the condition being treated on the grounds that it is "experimental."

My case with Actemra treatimg PMR was somewhat unique at the time because Actemra wasn't FDA approved for PMR like Kevzara currently is. Actemra was FDA approved for GCA back in 2017 but not for PMR. I started Actemra to treat only PMR in 2019. My rheumatologist wanted me to try Actemra for PMR and told me it represented my "best chance" of ever getting off prednisone. No rules were broken.

My health care is provided by the US government at no cost to me. That is hard to explain because I don't work for the US goverment. My health care is a benefit that I receive for being in the military a long time ago but I don't have any other connection to the US government.

My rheumatologist didn't fabricate or change my diagnosis in any way. The goverment has all of my medical records. My rheumatologist petitioned the authorities so that I could receive Actemra. I didn't expect Actemra to be approved. The approval was with the stipulation that I be treated "as if" I had GCA. I don't pay anything for Actemra because it was authorized by a panel of doctors who worked for the federal government.

Part of the reason Actemra was approved for me was that it was deemed to be cost effective given my bad experiences with being on long term prednisone. The adverse effects of long term prednisone use are well documented in the medical research done all over the world. That documentation was also used to justify Actemra for me.

Actemra was started without any evidence it would work for PMR as long as I was willing to try Actemra. I was originally approved to receive a monthly infusion of Actemra but when it was time to start Actemra my rheumatologist changed his mind. He literally said I would start with an injection every 2 weeks to "play it safe."

I wasn't ever part of any research study but there is a lot of training that happens in the government provided health care system that I am part of. I am seen by new doctors fresh out of medical school but they are supervised by more experienced doctors. The experienced doctors quiz the newer doctors while I'm asked questions. I feel like I am being trained too but mostly I just correct things about my symptoms that aren't accurate. Every rheumatology visit takes about an hour and many things are discussed.