By Dominique Daniels
Two weeks ago, I testified before both the House Government Operations Committee and the Senate Finance Committee about legislation to expand the authority of the Prescription Drug Affordability Board (PDAB).
I tried to explain to my legislators that this PDAB expansion was the wrong path for patients across Maryland, who just like me, are watching these boards crop up across the country and we are scared. We are scared that pharmacies won’t be able to afford to stock our medicine, we are scared that our insurance company and its Pharmacy Benefit Manager will decide to change the formulary and not cover my medicine, and we are scared that the PDAB’s indiscriminate decisions to put any drug on the list that our medicine will be next.
Unfortunately, all I heard was more lip service to patients.
I heard from the Chairwoman, “we’re doing this for you.”
Are they?
I know that actions speak louder than words, and up to this point there’s been a distinct lack of action for patients from the Prescription Drug Affordability Board (PDAB), its staff, or our elected officials.
Take a look at the latest “Proposed Regulations – Review of Comments” from the Prescription Drug Affordability Board. Nearly every recommendation that was brought forth by patients, the organizations that advocate for us, and others was recommended for “No Action” by the PDAB staff. I have spoken with numerous other patients and their organizations and not one person has had outreach from the PDAB or the staff.
So, I ask again. Is this really for patients like me? Because it sure doesn’t seem like those in power are really listening.
Patients don’t want the PDAB, let alone expand its authority.
It’s alarming that neither the PDAB nor the legislators creating these policies can articulate how they will assure patients aren’t impacted by an upper payment limit.
What happens when my doctor tells me that because of the upper payment limit on my medication, my insurance company isn’t going to cover my carefully dialed in medication, and now I have to use an ineffective medicine? Or what if my pharmacists can’t afford to carry my medicine anymore because of the low reimbursement?
How is the PDAB going to protect me? The Board continues to say that there will be no access issues but has failed to explain why.
Limiting access to life-saving medication should not be an option, yet that’s exactly what an upper payment limit will do to my medication.
Do you have any idea how scary that is? After years of dialing in the medicines that my body needs to function, it’s being experimented on by people who don’t know me or my doctor. I have to put my life in the hands of an unelected board of “health economists,” as Delegate Cullison told us.
Clearly, the Maryland General Assembly cares far more about scoring political points than the health of their constituents.
As a Marylander, I am disheartened to see my elected representatives wholly disregard me and the warnings of so many other patients about the impact an expansion of the PDAB’s authority will have on their constituents’ health.
Why not wait to see what happens with other states? Why don’t we take care of patients who have rare diseases? Why don’t we include patients on the board?
I get it. Lowering prescription drug costs is a big winner in polls. I actually agree. We should be trying to lower patients’ out-of-pocket costs, but how you do that matters, and the sole tool that the PDAB is utilizing is not the answer. It’s hard to understand why they are rushing to expand the PDAB authority with so much opposition from across the spectrum when there are so many other proven options to save out-of-pocket costs for patients.
I ask our elected officials, is a political win so important that you are willing to risk my life, and the health of thousands of others, to score a political point?
Dominique Daniels is a Crohn’s patient from Baltimore City and manager of Community and Patient Support for Color of Gastrointestinal Illnesses.
