This week, Patients Rising submitted formal comments to the Centers for Medicare & Medicaid Services as part of the agency's comprehensive review of the Essential Health Benefits framework — the rules that decide what your health insurance actually has to cover, including your prescription drugs.

You can read our full comment letter here. We were also proud to join a multi-organization letter alongside patient groups from across the country, led by the HIV+Hepatitis Policy Institute.

But we wanted to say something in our own voice, too. Because underneath all the regulatory citations, this review comes down to one question.

The one test that matters

Everyone in health care — insurers, pharmacy benefit managers, employers, regulators, pharmaceutical companies, and yes, advocates like us — should be judged by a simple standard: are we lifting financial burden off the patient, and is what remains clear, predictable, and honest?

Notice what that test doesn't say. It doesn't say patients should never pay anything. Cost-sharing is part of how insurance works, and we don't pretend otherwise. What we ask is that when a patient owes something, they can know what it is in advance — and that when someone helps them pay it, the help actually helps them.

That second part is where the system is failing. Badly.

The double dip, explained

Say you live with a chronic condition and your medication has no generic option. The manufacturer offers copay assistance — money specifically intended to defray your out-of-pocket costs. For years, that assistance counted toward your deductible and out-of-pocket maximum, the way any payment made on your behalf should.

Then the deal quietly changed — just not for patients. Under so-called copay accumulator policies, the assistance money still gets collected, but it no longer counts toward what you owe. Whether it's the insurer, the PBM, or an employer plan making that call, the result is the same: everyone else in the chain saves money, and the patient is left holding the bag.

The assistance runs out, your deductible is still sitting at zero, and you pay the full amount a second time — out of your own pocket. The plan gets paid twice for the same obligation. Just this month, KFF Health News reported on a Florida patient who relied on assistance for sixteen years to afford a medication costing more than $7,700 a month — until his insurer simply stopped counting it toward his $10,600 out-of-pocket maximum.

Here's the part that should make everyone angry: this is already illegal. Federal regulation defines cost-sharing as any expenditure required "by or on behalf of" an enrollee. A federal court said so in September 2023, striking down the rule that let insurers decide for themselves whether assistance counts. Nearly three years later, the federal government still hasn't enforced that decision — and accumulators have spread to nearly 40 percent of ACA marketplace plans. Twenty-six states, D.C., and Puerto Rico have banned them. Your protection from this scheme shouldn't depend on your ZIP code.

And accumulators are just the entry-level scheme. "Copay maximizers" now designate hundreds of covered drugs as — we're not making this up — "non-essential health benefits" so plans can escape the ACA's cost-sharing limits and harvest every dollar of available assistance. "Alternative funding programs" push patients out of their own insurance entirely and toward charity programs or imported drugs. These aren't benefit designs. They're business models built on money that was meant for patients.

What we asked CMS to do

Our comment asks CMS to run every idea in this review through the patient test, and to act on five things:

1. Keep the prescription drug protections that exist. The framework is largely working; the enforcement isn't.
2. Make copay assistance count toward deductibles and out-of-pocket maximums — through guidance and a new rule consistent with the court's decision — and enforce it everywhere.
3. End the "non-EHB" shell game by clarifying that all covered prescription drugs are essential health benefits, in every market.
4. Investigate and prohibit alternative funding programs.
5. Don't let the loopholes define the benchmark. As CMS reconsiders what a "typical employer plan" looks like, typical should mean the benefits employers cover — not the extraction schemes their vendors sell them.

What the other side will say

The insurers and PBMs commenting in this same docket will tell CMS that copay assistance "raises premiums" and that patients need more "skin in the game." We answered them directly, on the record. If accumulators were producing savings, premiums would be falling in the states that allow them compared to the twenty-six that don't. They aren't. Meanwhile, the share of plan sponsors who openly describe manufacturer assistance as a way to save money for themselves has more than doubled since 2018 — to 62 percent. That's not a premium strategy. That's a confession.

And patients with chronic illness don't need lectures about skin in the game. Their skin is the game. When cost exposure becomes unaffordable, patients don't become better shoppers — they abandon prescriptions, and the costs resurface in emergency rooms.

What you can do

CMS asked for information. Patients are the information. If a copay accumulator, maximizer, or "alternative funding program" has taken assistance that was meant for you, share your story with us — patient experiences are the most powerful evidence we can put in front of regulators and Congress, where the bipartisan HELP Copays Act is still waiting for a vote.

Lift the burden. Make it clear. It's not a complicated standard. It's just one the those who are benefitting from this hope nobody applies.

Patients Rising's full comment letter to CMS is available here. The comment was submitted July 14, 2026, to docket CMS-9874-NC.