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105 Patient Groups Detail to FTC PBM Practices That Harm Access and Affordability of Drugs

MAY 24, 2022  — Today, the HIV+Hepatitis Policy Institute (HIV+Hep) and the Autoimmune Association, along with 103 other organizations representing a broad range of patients across the country, submitted comments to the Federal Trade Commission (FTC) in response to a Request for Information (RFI) on the impact of pharmacy benefit manager (PBM) practices and the ability of patients to access and afford their prescription medications.

“While most people think insurers make the majority of decisions regarding health coverage and affordability,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, “when it comes to prescription drugs, it is the PBMs that drive many of the decisions as to what medications a beneficiary can access and how much they pay for them.”


In the letter to FTC Chair Lina Khan the organizations wrote, “We call on the FTC to use all the power within its purview to help alleviate these harmful policies and practices that make access to prescription drugs out of reach for patients and impact the health of our nation.”

The patient groups continued, “While originally intended to process pharmacy claims, PBMs have evolved into one of the largest drivers of determining prescription drug access and affordability.” In the letter the groups identified several PBM practices and policies that directly impact patients such as which drugs are on plan formularies, utilization management including step-therapy and prior authorizations, what tier each drug is on along with several other cost-sharing decisions, and pharmacy access.

“Today’s unregulated PBM marketplace is particularly harmful to the millions of patients with autoimmune diseases who are often required to jump through unnecessary and costly hoops to access the medicines recommended by their providers, further delaying the road to wellness,” said Molly Murray, CEO of the Autoimmune Association.

In the letter, advocates note how the significant growth and power of the three largest PBMs contributes to the negative impacts on the ability of patients to access and afford their medicines.

“This concentration of power provides them with an overly sized role in deciding what drugs patients can take and at what cost. Often this interferes with the decisions of medical providers and, due to high patient cost-sharing, makes prescription drugs unaffordable for many patients,” the groups wrote. “This not only impacts the health of the patients we represent but the health of the entire country and healthcare spending in other areas if patients are not able to access and afford the medications that their providers prescribe.”

In their detailed comments, the groups singled out the role of rebates that PBMs receive from drug manufacturers that influence which drugs are on a formulary along with utilization management techniques, and what tier a drug is on. Data shows that a very small amount of prescription drug rebates are being shared with the patients who are responsible for generating them. Not only are beneficiaries who use prescription drugs paying their cost-sharing on inflated list prices due to rebates, but they are also generating revenues for PBMs and insurers that they keep for themselves and reduce overall premiums.

PBMs have a major influence on how much patients pay for their medications. This is determined by a number of factors, including plan benefit design, such as the use of co-insurance and high deductibles; drug tiering; and whether copay assistance counts towards a patient’s deductible and out-of-pocket maximum. The letter from 105 patient groups details that due to these high costs many patients rely on manufacturer copay assistance to afford their prescription drugs. However, more and more PBMs have instituted harmful policies, known as copay accumulator adjustment programs, that do not apply copay assistance towards beneficiaries’ out-of-pocket costs and deductibles.

“Because of the integration of PBMs and insurers, they are able to more closely track all parts of the pharmacy transaction process and implement these policies that significantly increase out-of-pocket costs for patients.  It also allows insurers, with the help of their PBMs, to ‘double dip’ and increase their revenue by receiving patient copayments twice.”

In addition to the HIV+Hepatitis Policy Institute and the Autoimmune Association, signatories to the letter include the Allergy and Asthma Network, American Kidney Fund, CancerCare, Crohn’s & Colitis Foundation, Diabetes Leadership Council, Lupus Foundation of America, Multiple Sclerosis Foundation, National Viral Hepatitis Roundtable, and Susan G. Komen.

Read the full letter here.

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