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It is time to advocate for the patient


Special to the Journal


Republicans and Democrats used to boast about protecting people from having to use hospital emergency rooms unnecessarily.  Both parties rallied around the flagpole, trying to demonstrate who cared more.  In the end, empty promises.

Before leaving office, the Trump administration decided to throw a large bone to the health insurance industry and their partners in this caper, pharmacy benefit managers (PBMs).  The solid gold bone allows health insurers and PBMs to exclude medications that a patient receives through pharmaceutical manufacturer patient assistance programs (PAPs) from counting against their deductible and maximum out-of-pocket amount, otherwise known as copay accumulator programs.

Many pharmaceutical companies offer PAPs and Copay cards, covering all or part of medication expenses to enable patients to afford medications.  These programs are used by millions of Americans who suffer from one or more chronic disease conditions.  Cancer patients, for example, need PAPs because the cost of their overall care is so expensive, and the medications they take often do not have a generic equivalent. 

Historically, the value of a PAP or copay card was counted toward an individual's health insurance policy deductible.  Most people are familiar with paying a deductible as part of their medical and prescription drug coverage.  Once the deductible is met, a larger portion of their medical expenses is paid for by the insurer.  With the advent and expansion of high deductible health plans (HDHPs), individuals may face deductibles of at least $1,400/year and up to $6,900/year for total annual out-of-pocket expenses.

Guy Anthony of Brooklyn, N.Y., lives with HIV and bipolar disorder and relies heavily on the manufacturer's copay assistance program to afford his Genvoya medication to treat his HIV.  He describes his situation in simple terms: "I'm not rich, and most people living with co-morbidities aren't either.  My grandmother takes close to 10 different medications, and this new policy is making it hard for her to live."

Why?  Because as insurance companies and PBMs expand the use of copay accumulators and watch their profits and stock price increase, Guy's assistance is reduced, and he and patients like him end up increasing their out-of-pocket expenses to meet their deductibles.  And his grandmother's health is threatened by the Trump Rule. 

The pharmaceutical company programs were created to help people like Guy and his grandmother.  Restrictions like the Trump Rule result in reduced medication adherence, poorer health outcomes, and ultimately, higher healthcare costs.  When cost-containment such as Copay Accumulator Programs negatively impact prescription compliance, it is the patient who suffers.

A recent West Health-Gallup survey underscored the importance of what happens under the Trump Rule: In the last year, tens of millions of Americans said they were forced to cut back on necessities like food (12%) and utilities (9%) to pay for basic healthcare. Nearly 30% found paying for general healthcare a significant financial burden, behind housing (51%), taxes (48%), and food (41%). Costs for prescription drugs are a substantial financial burden for more than one in five adults (22%). More than half (52%) of all Americans also said they are either "worried" or "very worried" that a health event will wipe out their savings.

The Biden Administration can be an advocate for the patient.  All it takes is an Executive Order issued by President Biden to eliminate the Trump Rule.  And every day that Congress and the Biden Administration delay, they become Trump High Healthcare Cost co-conspirators.

Jeffrey Lewis is the President and CEO of Legacy Health Endowment.  The views expressed are his own.  Brandon Macsata is the CEO of the ADAP Advocacy Association.