It’s time to fix this mess, but first we have to understand it.

From J D Faccinetti – cofounder: Pituitary World News has undertaken an initiative to understand and share the complicated issues related to access to medications and costs so pituitary patients can join us in advocating for better healthcare systems. In that mesh of confusion, we find insurance companies, orphan drug manufacturers, specialty pharmacies, pharmacy benefit managers, also known as PBM’s, prescribers, and others that add to the costs and complicate access. The issues get even murkier when considering patients on Medicare, Medicaid, pricing models, and copay requirements.

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We are committed to understanding the issues from all angles, how these issues affect the care of pituitary patients, and the advocacy effort needed for affordable prices, lower out-of-pocket costs, and, more significantly, uncomplicated access to medications. Additionally, we aim to understand patients’ and physician’s experiences with the overall cost challenges of care.

We strongly believe patients must have a say, so here is one opportunity to make your voices heard.  This brief, one-question survey is designed to learn about your views and opinions about these issues.

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Below is some additional background:

 A recent article from the American Medical Association – AMA – provides some background of the players and an argument for transparency; it is a good summary of who is involved and how prescription drug prices are determined.  The article points to the non-transparency of pricing procedures, which does not include patients and physicians despite the impact these processes have on health and treatment issues. 

According to this article from the AMA, the major market players significantly impacting drug prices are pharmaceutical companies, which manufacture and initially price drugs;  Pharmacy benefit managers (PBMs), who work on behalf of health insurance companies or employers to negotiate upfront discounts and rebates; Health insurance companies, which approve treatments, set co-pays, and price out with PBMs how much patients pay for drugs; and Specialty pharmacies, which distribute the medications. 

 We have done some research on the issues, so please contact us if you’d like more background information.  

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