PBMs Are An Unnecessary Barrier to Affordable Care

Pharmacy Benefit Managers (PBMs) play a major role in the healthcare system, acting as middlemen between insurers, pharmacies, and drug manufacturers. Their primary function is to negotiate drug prices, manage formularies, and process claims. In theory, PBMs should lower drug costs by leveraging bulk purchasing and encouraging competition.

PBMs often operate in ways that prioritize profits over patients. They negotiate rebates with drug manufacturers, but these discounts rarely reach consumers. Instead, rebates are funneled into the PBM's revenue stream or used to lower overall premiums, leaving many patients to pay inflated out-of-pocket costs based on a drug's list price.

For autoimmune patients who rely on high-cost biologics, these inflated costs are a significant burden.

One advantage of PBMs is their potential to reduce drug costs for insurers and large employers. By pooling buying power, PBMs can secure lower prices on certain medications. This theoretically allows insurers to offer more competitive plans. Additionally, PBMs manage formularies to promote cost-effective treatments, which can lead to better resource allocation within the healthcare system.

But these advantages often come with harmful trade-offs. PBMs control formularies with minimal transparency, frequently excluding effective medications in favor of drugs with higher rebates. This practice forces autoimmune patients to endure trial-and-error treatment plans as they navigate “step therapy” requirements.

The result is delayed access to the right medication and worsened health outcomes.

PBMs also restrict access through "non-medical switching," where patients are required to change medications for financial rather than clinical reasons.

For autoimmune patients, this can mean being forced off a stable, effective treatment in favor of a less expensive alternative. The health risks associated with these switches—flare-ups, disease progression, or even hospitalization—are profound.

One of the most frustrating aspects about them is their lack of accountability. These organizations face little regulatory oversight and often operate behind closed doors. Patients and even healthcare providers rarely understand why certain drugs are covered while others are not. This makes it impossible for patients to advocate for themselves.

For the autoimmune community, PBMs create a system that prioritizes cost-cutting at the expense of health. The high cost of biologics and specialty drugs means many patients already face financial strain. PBM practices exacerbate this by inflating out-of-pocket costs and limiting access to necessary treatments.

To improve outcomes for autoimmune patients, the system must change. Greater transparency in PBM operations is critical. Patients deserve to know why their medications are being denied or why their out-of-pocket costs are so high.

Eliminating rebate-driven formularies and enforcing rules against non-medical switching would help ensure that clinical decisions prioritize patient health

Recent legislation has attempted to address the harmful practices of Pharmacy Benefit Managers (PBMs) to create a more transparent and equitable system. At the federal level, the Pharmacy Benefit Manager Reform Act (S.1339) aims to increase transparency in PBM operations. It requires PBMs to disclose critical details about their rebates, pricing strategies, and service agreements. By mandating this reporting, the bill seeks to prevent PBMs from exploiting rebates at the expense of patients while promoting fairer drug pricing structures​

On the state level, New York, California, and Louisiana have implemented laws imposing fiduciary duties on PBMs, ensuring they act in the best interest of health plans and patients. These laws also limit harmful practices like "spread pricing," where PBMs pocket the difference between what they charge insurers and what they pay pharmacies. Additionally, transparency regulations in several states now mandate PBMs to report fees, rebate structures, and pricing data, allowing for greater accountability and enforcement​

Despite these steps, the autoimmune community still faces challenges under the current PBM-dominated framework. Regulatory measures must extend further to address the systemic prioritization of profits over patient health. Enhanced enforcement and more comprehensive reforms are necessary to ensure PBMs serve patients rather than exploit them.

While PBMs have theoretical benefits, their current structure harms more than it helps. For the autoimmune community, they represent yet another barrier to care in an already fragmented healthcare system. Until meaningful reform occurs, PBMs will continue to prioritize profits over patients, leaving those with chronic illnesses to suffer the consequences.