While I have learned the way of PBMs as a patient needing to navigate specialty medications, I realize my path was made easier than most by being a Nurse. Seeing the comment below of formularies in different countries brings up something that's been pressing on me, due to the amount of criticism directed to our system as a whole as well as Big Pharma's role.
I have a sleep disorder (IH) that had me living a heavy-lidded existence for years, even while maxed out on stimulants. That changed last year when the benefits of Xywav started to outweigh the risks (increased anxiety and depression, which I already struggle with). It took a few months for approval (valid, it's a REMS med) and has a few quirks (I take it twice a night, have cutoff times for eating), but it has *completely* changed my life and experience of it.
All of the hatred against Big Pharma makes me wonder though: is it not that money-hungry industry, rolling in all of its wealth, that makes Xywav (a very expensive rx I pay $5 for) available to me? Because from what I'm finding, it is not available as a treatment for IH anywhere else in the world. Only here. Perhaps for many countries, it is the stigma. For others, the cost. Perhaps it just isn't possible in countries with nationalized healthcare where waits to even meet a sleep physician are measured in years.
I struggle a lot with the criticism, not only because of my experience with it but also the knowledge I have as a former oncology nurse: people from all over the world with diagnoses of all kinds come here (if having the means to do so) for healthcare. They fly over oceans for our chemo, cross hemispheres for risky surgery. They come here because we are good at healthcare and orphan drugs and research. We have treatments they don't, the kind that can completely change their lives.
I also know that the experience I've had and my access to care is a privilege of having the insurance I have through work. Though I do think they've noticed, as my approved PA was blocked (per my pharmacy) by a cost-limit (?) that my PBM was able to override (??) and perhaps this is dramatic of me but I picture HR in all their (fake) niceties deciding to pull the plug on the one FDA approved treatment for IH for their one employee unlucky enough to get the rare diagnosis. I realize now this is more of an essay of statements and lacks any sort of question. Perhaps I just needed to get it out.
Don’t forget that pharmacy rebates are included in formulary decisions. Rebates are sometimes a substantial portion of the cost that consumers pay for their medication’s, and our returned directly back to the HEALTH INSURANCE or PBM, those rebates never make it back to the members. So I remember paying $1000 for a drug that has a $300 rebate never gets that money back. The health insurance company gets the money as profit.
It would be interesting to have a comparison about how formularies work in different countries. For example, in Germany I dont think this is much of a problem.
The original sin of US healthcare to me is that people who manage other people's money (PBMs and insurers) get to own and also BE the recipients of that money (providers and pharmacies). The temptations to screw everything up under such a system are myriad.
While I have learned the way of PBMs as a patient needing to navigate specialty medications, I realize my path was made easier than most by being a Nurse. Seeing the comment below of formularies in different countries brings up something that's been pressing on me, due to the amount of criticism directed to our system as a whole as well as Big Pharma's role.
I have a sleep disorder (IH) that had me living a heavy-lidded existence for years, even while maxed out on stimulants. That changed last year when the benefits of Xywav started to outweigh the risks (increased anxiety and depression, which I already struggle with). It took a few months for approval (valid, it's a REMS med) and has a few quirks (I take it twice a night, have cutoff times for eating), but it has *completely* changed my life and experience of it.
All of the hatred against Big Pharma makes me wonder though: is it not that money-hungry industry, rolling in all of its wealth, that makes Xywav (a very expensive rx I pay $5 for) available to me? Because from what I'm finding, it is not available as a treatment for IH anywhere else in the world. Only here. Perhaps for many countries, it is the stigma. For others, the cost. Perhaps it just isn't possible in countries with nationalized healthcare where waits to even meet a sleep physician are measured in years.
I struggle a lot with the criticism, not only because of my experience with it but also the knowledge I have as a former oncology nurse: people from all over the world with diagnoses of all kinds come here (if having the means to do so) for healthcare. They fly over oceans for our chemo, cross hemispheres for risky surgery. They come here because we are good at healthcare and orphan drugs and research. We have treatments they don't, the kind that can completely change their lives.
I also know that the experience I've had and my access to care is a privilege of having the insurance I have through work. Though I do think they've noticed, as my approved PA was blocked (per my pharmacy) by a cost-limit (?) that my PBM was able to override (??) and perhaps this is dramatic of me but I picture HR in all their (fake) niceties deciding to pull the plug on the one FDA approved treatment for IH for their one employee unlucky enough to get the rare diagnosis. I realize now this is more of an essay of statements and lacks any sort of question. Perhaps I just needed to get it out.
Don’t forget that pharmacy rebates are included in formulary decisions. Rebates are sometimes a substantial portion of the cost that consumers pay for their medication’s, and our returned directly back to the HEALTH INSURANCE or PBM, those rebates never make it back to the members. So I remember paying $1000 for a drug that has a $300 rebate never gets that money back. The health insurance company gets the money as profit.
Of course.
It would be interesting to have a comparison about how formularies work in different countries. For example, in Germany I dont think this is much of a problem.
A brief review of this article suggests two major differences: 1) the insurers negotiate all of their formularies and pricing in a cartel the GRK-SV. 2) The insurers don't own any pharmacies. https://www.commonwealthfund.org/publications/issue-briefs/2020/jan/drug-price-moderation-germany-lessons-us-reform-efforts
The original sin of US healthcare to me is that people who manage other people's money (PBMs and insurers) get to own and also BE the recipients of that money (providers and pharmacies). The temptations to screw everything up under such a system are myriad.