By Sharon Joseph – Executive Director, Lupus Foundation of Southern Arizona
As someone who works closely with the patient community, I feel it is my responsibility to monitor the actions in Congress when it comes to drug pricing. Most often, I am left disappointed that various pieces of legislation that would have a real and tremendous impact on the patient community ends up dying on the vine due to the bitter partisanship in our current Congress. Opportunity after opportunity to receive real savings at the pharmacy counter for those who need it the most have been missed, despite the many promises made by our elected officials every campaign season.
Lupus is a very expensive condition to treat. New treatments have an annual cost between $30,000-$40,000. While the new treatments have had tremendous benefits to those with lupus, it has forced many patients to skip doses or delay prescription refills. These are choices that any patient, whether one with lupus or any other chronic disease, should not have to make.
So, it’s refreshing to see that there may be another way to tackle high out-of-pocket costs for our patients, and that is through the Federal Trade Commission (FTC). In early June, the FTC announced that they would launch investigations into major pharmacy benefit managers and their business practices. This has been a long time coming, as Congress has repeatedly called on them to take a closer look at these institutions and the role they play in the final cost of a prescription medication.
Explaining the role of pharmacy benefit managers is about as easy as explaining quantum physics to many of us, but it essentially boils down to this: Pharmacy Benefit Managers, or PBMs for short, basically serve as the middleman between your insurance company’s drug plan and the drug manufacturer. Now comes the confusing part. The role that PBMs play is something of an enigma. As the online publication Fierce Healthcare put it, “the role (of PBMs) can’t be quantified, at least not for the public, because PBMs are secretive about their price negotiations with pharma companies.” That should be an enormous red flag, and it’s great to see that the FTC agrees.
Many of the tactics that PBMs employ range from questionable to highly suspect, but of particular concern to the patient side of this issue is the topic of drug rebates. These are the rebates, or coupons, that a manufacturer provides in order to discount the list price of a drug. The intention of them is to obviously lower the price for the consumer, but the problem is that PBMs often get in the way with its web of administrative and authorization hurdles, and the result is that the discount is never properly passed through to the consumer.
It will be fascinating to see what the FTC finds in their investigation into PBMs, but we shouldn’t be relying on them alone to fix this issue. As Congress continues to work throughout the summer on drug pricing bills, I hope that our elected officials, especially our very own influential U.S. Senators Kyrsten Sinema and Mark Kelly, will work parallel to the FTC and demand action on PBMs through legislation or as part of the drug pricing reconciliation bill. Of course we know that the answer to lower drug prices doesn’t rest with PBMs alone, and that it will take all those in the prescription drug supply chain to come to the table in order to make tangible progress. But the FTC launching this investigation should serve as a call-to-action for Congress. The message the FTC is clear: The solution to high drug costs is out there. We just need to work to find it.
Sharon Joseph is the Board President at the Lupus Foundation of Southern Arizona (LFSA). LFSA’s mission is to provide support, education and partnership to those affected by Lupus, while promoting the development and enhancement of health and social welfare at the local level.