As COVID-19 ravages the country, insurers and employers need to step up for patients with debilitating diseases

As the United States faces the challenge of combating the coronavirus pandemic, the American Behcet’s Disease Association, for which I serve as executive director, is working tirelessly to ensure the needs of those patients and families struggling with this chronic illness are not overlooked. COVID-19 has proved to be an additional threat to people already suffering from chronic and preexisting conditions; these patients cannot be overlooked.

Behcet’s Disease is a debilitating disease that can involve all organ systems and requires ongoing care. It is, therefore, critical that patients have access to necessary medication and essential treatments. However, rising out-of-pocket costs for drugs continue to prove burdensome for individuals to get the help they need. 

Currently, many vulnerable Americans rely on cost-sharing assistance in order to counter increasing out-of-pocket costs and to afford their medications. Numerous patients on private and employer provided insurance have increasingly relied on this assistance, but the annual Notice of Benefit and Payment Parameters (NBPP) will now permit health plans to exclude cost-sharing assistance from counting towards spending limits and deductibles. Under this recently finalized policy, insurers can expand the use of accumulator adjustment programs, meaning patients could face thousands of dollars in unexpected costs at the pharmacy counter as they are forced to spend more to reach their out-of-pocket maximums. 

This new rule would also put more power in the hands of insurers and Pharmacy Benefit Manager (PBM) middlemen, as the entities that will be relied on to judge whether patient assistance programs are used within their plans. Unfortunately, both entities have garnered the reputation of bad actors due to their lackluster efforts to curb skyrocketing out-of-pocket spending, providing little semblance of relief to patients. Not to mention the fact that PBMs are known to keep savings garnered from manufacturing discounts rather than sharing it with patients in the form of lower drug prices. While a handful of states have taken action against accumulator adjustment programs, more lawmakers must speak up for their constituents in 2021, before this new rule is implemented. 

To compound matters, CMS recently put forth a new Notice of Proposed Rule Making for Medicaid (comment period closed on July 20) aiming to address accumulators, but the rule is contradictory to the NBPP change. Should the proposed rule go into effect, it would require drug manufacturers to include the value of patient assistance programs in their “best price” calculations unless the manufacturer is able to ensure 100 percent of the assistance benefit goes to the patient. This is of course impossible for manufacturers to guarantee, especially when the 2021 NBPP grants insurers and PBMs the flexibility to expand the use of accumulator adjustment programs. This requirement ties the hands of manufactures and could inadvertently create disincentives for future offerings of cost-sharing assistance, particularly for new, innovative drugs and therapies in both Medicaid and the larger commercial market. 

If individual plans move forward with enforcing these rules, patients’ out-of-pocket costs will significantly increase and their access to medication will be limited. These changes will result in exactly the problems that cost-sharing assistance was designed to resolve and will cause significant harm to patients, deter physicians’ clinical treatment decisions and impede efforts to address the negative impact of chronic diseases. 

In the midst of a global health crisis, all patients, especially those living with a chronic illnesses or debilitating diseases, should never worry about whether they will be able to access and afford the care they need. To counter the gross impact this pandemic has already afflicted on our nation, insurers and PBMs must refrain from implementing programs that would only further restrict access and put burdensome pressure on the entire healthcare system.

Additionally, short-sighted changes like those included in the recent Medicaid proposal must be reconsidered. We urge policymakers, insurers, states and employers to join us in prioritizing patients’ needs when considering these policies and support patients by ensuring cost-sharing assistance is counted towards patients’ annual limitation to help ease the burden of drug costs. 

Mirta Avila Santos, MD, serves as executive director and patient advocate at the American Behcet’s Disease Association (ABDA). She works with the rare disease communities and believes that the patient’s voice has to be included and amplified throughout the continuum of care.