There is a Save Rare Treatments task force that is working on saving the incentives for pharmaceutical companies who create the research and medications for our rare diseases. These incentives were accidentally overlooked in the recently passed
Inflation Reduction Act.
Without getting too much in the weeds – we’re trying to get Congress to pass the Orphan Cures Act. Medications for people like us are called “Orphan Drugs.” There was an Orphan Drug Act that passed in the 80’s – and because of that act, my wife Sarah can get Rituxan for her EGPA, even though it’s indicated for other rare forms of vasculitis and not hers. Because of that act, drug companies were allowed to recoup their losses from all of the expensive trials and research when it comes to rare disease medications.
There are so many bad actors in the health care ecosystem that it’s hard to keep track of them all! That’s why we’re here – to try and break down some of these complicated and bloated systems to ensure that you have the information you need – and when you have the energy and time – to have a voice in the midst of the chaos!
This discussion is about PBMs and how they affect your medication costs!
Pharmacy Benefit Managers. PBMs are middlemen that negotiate and manage prescription drug benefits on behalf of health insurance companies, self-insured employers, and government programs. Express Scripts, CVS Caremark and Optum RX are the 3 main ones that control 80% of all medications.