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Insurance, Copays and Deductibles – O My!

We live in a time when research has provided us with incredible treatments and care individually tailored. But the other half of the reality is that many of these treatments are costly and out of reach to so many in the breast cancer community – placing an undue financial and emotional burden on individuals already navigating a cancer diagnosis. It doesn’t help when health plans continue to develop practices that benefit the plan but harm the patient. Komen Center for Public Policy prioritizes working on policies that  ensure individuals living with breast cancer and breast cancer survivors have access to high-quality healthcare without financial or administrative barriers, which includes access to critical prescription drugs. Below we talk about two of these deceptive insurance practices – copay accumulator adjustor programs and copay maximizers – why they hurt patients and what is being done about it.

Copay Accumulator Adjustor Programs
A copay accumulator adjustor program, or CAAP for short, is when a health plan accepts manufacturer copay assistance but does not count it towards a patients’ out-of-pocket (OOP) maximum or deductible. Because many individuals in the breast cancer community are faced with high costs when it comes to accessing needed medications, some individuals may rely on manufacturer copay assistance in order to be able to pay for their medications. Often individuals do not even know that their plan has a CAAP. It comes as a surprise when the copay assistance runs out, and the patient, thinking they must have met their deductible or OOP maximum, is faced with the full cost of the copay. These programs target the most vulnerable – individuals living with a serious, often chronic condition, who rely on outside assistance to afford medications.

CAAPs Day in Court
In August 2022, three patient groups joined together to file suit against the Department of Health and Human Services (HHS) challenging a 2021 federal rule that allows health insurers to implement CAAPs. The lawsuit argued that the 2021 rule violates federal law and directly contradicts the government’s own definition of cost-sharing.

Good news came in September 2023 when a judge ruled in favor of the patient groups and affirmed a prior federal rule, the 2020 Notice of Benefit and Payment Parameters (NBPP), which stated that insurers cannot implement CAAPs for drugs that lack generic equivalents. (You might be wondering what the NBPP is — the NBPP set rules and regulations for plans on the federally-run Marketplace and other private plans to which the Affordable Care Act (ACA) applies.) HHS appealed the decision. but the judge recently ruled again that the 2020 NBPP was in force and HHS withdrew its appeal.  

If you have made it this far and feel a little confused – that’s OK – many legal and health policy experts are still debating what all of this means! However, these two recent developments combined are very promising and suggest that today, CAAPs are NOT allowed for any breast cancer treatment which does not have a generic equivalent. The Center for Public Policy is continuing to ask for HHS to release guidance to clarify how it will enforce this policy so that patients may see the full benefit. 

Copay Maximizers
The second deceptive practice, known as a copay maximizer, occurs when a health plan deems certain drugs, typically specialty drugs like those used by many breast cancer patients, covered under the plan as non-essential. While the drugs are still covered, because they are deemed to be “non-essential” they are not subject to the protections put in place by the ACA. This means that again, none of the patient cost sharing for these particular drugs counts towards the patient’s OOP maximum or deductible and that the health plan can ignore rules around caps on annual limits – meaning they can charge the patient more than would typically be allowed.

In a win for the patient community, the Biden Administration addressed the issue of copay maximizers in the proposed NBPP for plan year 2025, which was released in November 2023.  Remember, the NBPP is a federal rule that sets regulations for plans on the federally-run Marketplace and other private plans to which the ACA applies.

The proposed rule includes a provision which clarifies that covered prescription drugs not included in a State’s essential health benefit (EHB) benchmark plan are still considered EHB and therefore, they are subject to requirements including the annual limitation on cost sharing and the restriction on annual and lifetime dollar amounts. While this does not address CAAPs, it does clarify, in federal regulation, that any prescription drug covered by a plan must be considered an EHB and therefore, copay maximizer programs are not allowed.

The final rule is expected in Spring 2024 and applies to health plans starting in January 2025.

You might feel like you need some help after reading all this but actually this section is named for the federal legislation Komen supports, the Help Ensure Lower Patient (HELP) Copays Act (H.R.830/S.1375), which would end the use of CAAPs and copay maximizers in private insurance plans. Why do we need this bill if there is already work being done to end CAAPs and maximizers? Passing the HELP Copays Act would put it in law that these programs (CAAPs and maximizers) are illegal. Unfortunately, regulations (like the NBPP) can be undone at any time by a new Administration. It is much harder to change something that is in law. 

The legislation would allow copay assistance, regardless of the source, to count towards a patient’s OOP maximum or deductible and would require all items and services covered by a health plan to be considered essential.

Where does that leave us?
Komen’s Center for Public Policy will continue to track all of these developments and keep the breast cancer community informed. We are also still pushing for the HELP Copays Act to be enacted by Congress, so we have enshrined in law that both copay accumulators and maximizers aren’t allowed. If you or someone you care for has been impacted by a CAAP or a maximizer, please share your story with us at . Stay tuned for more updates.