Nuanced response - or maybe just long-winded
In Colorado, I get rapa Rx from Landrey Fagan, MD in Boulder - she’s one of the 2 in-state on the list here. I’m on UHC medicare, which I’m pretty happy with. In my locale it’s a high functioning system at present - June 2023. My Primary is a nice guy and never heard of it. When presented with a paper about an 78 yo MD using it, he said it was anecdotal, and wasn’t interested in learning more (https://www.healthrising.org/blog/2022/07/06/apamycin-resurgence-doctor-chronic-fatigue-syndrome/ it’s referenced on this site). Another MD friend said “danger Will Robinson” that’s for Xplant folks, and a gerontologist acquaintance said NFW.
I went to my dermatologist for a basal cell skin cancer excision, and he had never heard of rap cream for skin. I gave him a paper on it, and he was super-skeptical cuz he didn’t hear about from a convention or continuing ed or whatnot.
My limited sample of 5 docs (2 primaries, 1 gero, 1 public health, 1 derma) sez that many have never heard of it.
So my “nice guy” Primary wasn’t interested - he’s connected with a group family medicine practice that’s connected with the local hospital. So why isn’t he interested?
He’s a caring, competent guy … so what gives?
It’s Standard of Practice! SOP is a medical rule that’s enforceable by institutions, and if he deviates from it, he’s up for criticism and possible censure / liability, and non-reimbursement by insurance. I’ve only seen one deviation from it when I needed cardiac cath, and SOP didn’t cover it for my condition. My cardiologist went to bat for me (same medical system) and it was covered by insurance and he didn’t get his wrist slapped. So for an acute condtion with medical judgement they will deviate from SOP. But for a for a non-acute condition? Fuhgeddaboudit!
Howsoever … if you have a Lone Ranger MD who isn’t in a group practice and bills direct, you may get it.
What to do? Tell the Primary or not?
My opinion is yes, and if you don’t have the right primary, switch primaries.
I interviewed MDs in my regular United Health Care - Boulder Community Hospital team to find someone who was at least interested in the treatment. A younger guy, more open minded, and he’s interested - after he sees my results he may give it a whirl. But SOP doesn’t let him prescribe. Medicare ain’t gonna pay for no rap, as you know. However it will pay for most tests. Dr Fagan wanted a bunch of tests - nothing exotic, but some uncommonly used. I can get ‘em all from the hospital system, which I find convenient and competent, and my Primary can keep an eye out and even crosscheck. Oh - Dr Fagan costs $550 for the initial visit, and costplusdrugs.com charges 165 for 90 1 mg. To repeat my other posts, Mark Friggin’ Cuban’s costplusdrugs.com is a US pharmacy with US supply chain, and that’s important to me.
A couple parting points:
I continue to believe that 95% of MDs mean well, and do well, but you have to grab hold of the wheel and steer the process. Your primary should know what therapies you’re using, and if they balk at rap, find a different doc. I know that ain’t easy all the time, but sometimes it is. You also must do your part in terms of research, exercise and diet. Pills are insufficient, much to my dismay.
Landry Fagan costs $550 for a thourough intake interview. The subsequent 90 day eval is less costly, Yeah, it seems high, but MDs are knowledgable in multiple domains. Do you want to nickle-dime yourself into an early grave? Do you want to be your own doctor, and overlook something that a real doc would not?
Cheers!