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Autoimmune Association Advocates for Federal Legislation to Reform Harmful PBM Practices

What are Pharmacy Benefit Managers (PBMs)?

Pharmacy Benefit Managers, or PBMs, are entities that handle prescription drug benefits for health insurance plans. They work in between insurance companies, pharmacies, and drug manufacturers to manage drug prices, negotiate discounts, and process prescription claims. PBMs are currently attracting considerable critical attention from policymakers.

Their operations have been a subject of controversy for several reasons:

  • Lack of Transparency: PBMs negotiate discounts and rebates with drug manufacturers, but these negotiations are often considered business secrets and not disclosed publicly. This lack of transparency makes it hard for patients and providers to know the actual cost of medicines.
  • High Drug Prices: Despite negotiating discounts, the prices patients pay for prescription drugs can still be quite high. Sometimes, PBMs negotiate discounts but don’t pass on those savings to patients. This can make medicines unaffordable for many people.
  • Impact on Independent Pharmacies: PBMs sometimes create contracts with pharmacies that can favor larger pharmacy chains over smaller, independent ones. This can lead to smaller pharmacies facing challenges or even closure due to lower reimbursements for medications.

Effects on Patients with Autoimmune Disease

Patients with autoimmune diseases and other chronic conditions face unique challenges due to the nature of their conditions. These diseases often require consistent access to specialized medications to manage symptoms and prevent flare-ups. However, PBM practices can significantly affect patients in many ways:

  • Increased Out-of-Pocket Costs: Patients might end up paying more for their medications, even if there are negotiated discounts. This happens because the PBMs keep a portion of the discount for themselves rather than passing it on to patients.
  • Limited Choice of Pharmacies: Due to contracts between PBMs and specific pharmacies, patients might have to use certain pharmacies in order to get better coverage. This limits their freedom to choose where to get their medications filled.
  • Burden to Accessing Medications: PBMs may implement strategies like prior authorization or step therapy, requiring patients to try less expensive or alternative medications before accessing the ones prescribed by their doctors. For autoimmune disease patients, delays in accessing specific medications can exacerbate their conditions and lead to severe health complications.
  • High Out-of-Pocket Costs: Affordability of medications is a critical concern for individuals with chronic conditions. Even with insurance coverage, PBMs’ pricing structures often lead to high out-of-pocket expenses for specialty drugs used in treating autoimmune diseases. This financial burden can force patients to ration their medications or even forgo treatment, risking their health.
  • Limited Formularies: PBM develop lists of preferred drugs, or formularies, that it will cover on behalf of health insurers. Formularies influence which drugs individuals use and determine out-of-pocket costs. There can be perverse incentives involved when determining what drugs will be covered and PBMs often choose drugs that will benefit them financially versus what will be best for patients.
  • Disrupted Continuity of Care: Switching medications due to PBM requirements can disrupt a patient’s treatment plan. Consistency in medication is vital for managing autoimmune diseases effectively. Forced changes due to PBM policies can lead to increased symptoms or adverse reactions.

Legislation to Change PBM Policy

Controversies surrounding PBMs have sparked discussions and calls for policy changes. Reforms aimed at increasing transparency, regulating discounts, and supporting independent pharmacies are being considered to ensure that patients can access affordable medications without unnecessary hurdles.

Currently, there are over 25 bills introduced in Congress that will impact PBMs. The goal of these bills is to make sure that patients are at the center of the process, receiving fair pricing, better access to medications, and the freedom to choose where to get their prescriptions filled, ultimately improving healthcare affordability and accessibility for all.

The Autoimmune Association is staying active reviewing PBM reform legislation. We have formally endorsed several bills including the PBM Transparency Act introduced by Sens. Chuck Grassley (R-Iowa) and Maria Cantwell (D-Wash.) and we were recognized in their press release on August 18. We are also supporting the Modernizing and Ensuring PBM Accountability Act (MEPA). Additionally, we have hosted staff from the Senate Finance Committee to discuss the bill with our organization and other patient advocacy groups. The Autoimmune Association frequently partners with organizations to support PBM reform with sign-on letters and leads grassroots email campaigns. As part of the Autoimmune Community Summit in October, we hosted Rep. Wenstrup and Rep. Miller-Meeks to speak to the autoimmune community about these reforms and the work they are doing to help address patient burden and out-of-pocket costs.

Make a Difference: Tell Your Senator to Support PBM Reform

Your voice has power! Grassroots advocacy is foundational to our work at the Autoimmune Association. Reach out to your senator to encourage them to support legislation to reform PBM practices.  We are asking for individuals to help us in an end-of-year push to pass and enact both the Modernizing and Ensuring PBM Accountability Act (MEPA) and the Better Mental Health Care, Lower-Cost Drugs, and Extenders Act. Please visit our Advocacy Center to send a pre-written email (you can even customize it!) to your senator. It only takes minutes to make your voice heard and influence important public policy.



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