A recent study by the Global Healthy Living Foundation (GHLF) shows that contrary to what insurers and pharmacy benefit managers (PBMs) say, protecting patient assistance programs by restricting accumulator and maximizer programs has not made health insurance more expensive.

Accumulator and maximizer programs can make it much harder for patients to afford their medicines. They prevent financial assistance from counting toward a patient’s deductible and their maximum out-of-pocket payments (set yearly health care cost). The result: patients don’t get all the financial help they need and have to pay more out of pocket. Insurance companies and pharmacy benefit managers use these programs to shift the burden of medication costs onto individual patients — PBMs and insurers pocket such assistance intended for patients as profit.

  • Accumulators stop assistance from counting toward a patient’s deductible and out-of-pocket maximums.
  • Maximizers set out-of-pocket maximums equal to the maximum value of assistance, usually spread evenly throughout the year. Maximizers also stop assistance from counting toward a patient’s deductible and out-of-pocket maximum.

JP Summers, a rheumatoid arthritis and migraine patient, and Patient Advocate and Community Outreach Manager at GHLF, says “When I finally found a specialty treatment that worked, it was expensive, and I relied on a patient assistance program (PAP) to afford the medication that finally helped me feel better,” she shares. “But after using a PAP-funded card, the funds weren’t applied to my deductible. Instead, my monthly co-pay jumped from $40 to around $350. I had to make hard choices about which medications I could take home.”

PAPs help patients afford costly medications that might be beyond their reach due to their health plan’s design and out-of-pocket payment rules. However, individuals or families might not realize that their plan includes an accumulator or maximizer program. Such schemes can lead to unexpected costs when they find out they still owe money for their prescriptions, even after using the funds provided by the PAPs.

So, patients like Summers might find themselves choosing between necessary medicines and daily needs. “To me, this was basically like a car payment,” she says. “With chronic illness, it’s an ongoing thing — it’s not like getting the flu or breaking an ankle. We had budgeted for the $40 monthly, because that’s what I was used to paying for.”

To further illustrate this, GHLF has developed a free interactive tool demonstrating that state laws banning accumulator and maximizer clauses in health insurance policies have not increased the cost of health insurance.

So far, 19 states have passed laws protecting patient assistance programs (PAPs) by requiring that the financial assistance given to patients count toward the share of health care costs they must pay — co-pays, co-insurance, deductibles, and out-of-pocket maximums.

“Our analysis, which this year includes data from 13 states in 2022 and 19 states in 2023, shows no significant change to premiums, nor is the rate of health insurance premiums rising in states with protective, patient-centered legislation,” says Dr. Robert Popovian, PharmD, MS, Chief Science Policy Officer at the GHLF.

The GHLF tool makes it easy to see health insurance cost changes by state since 2014 and compare it to how health care premium costs have changed in states that have or have not protected patient assistance programs. Such data can provide valuable information for legislators, policymakers, and interested parties who value objective and transparent data to advocate for similar legislation in all states and at the national level.

“It’s not reasonable that patients are paying more than their fair share. We encourage legislators and other advocates who develop state and federal health policy to use our tool to fight for patient-protective laws nationwide,” says Dr. Robert Popovian, PharmD, MS, Chief Science Policy Officer at the GHLF.

And what can people living with chronic illness do? Find out if you’re affected by these programs by asking your employer’s health benefits manager about your coverage options, specifically:

  • I’ve heard about programs called accumulator adjusters that might stop my prescription assistance from counting toward my deductible. Are these programs going to be part of our plan next year?
  • Do you offer any low-deductible or co-pay only plans that could better match my healthcare needs? If those aren’t available, what support can you provide to help me afford my medicine, given the financial strain accumulators and maximizers could create?

Glossary of Terms

Understanding health care terms can be confusing. Here’s a list of handy definitions to help clear things up and empower you to advocate for your own health care needs.

  • Accumulator: a rule in some health insurance plans stating that the money you get from patient assistance programs doesn’t count toward your yearly deductible or your maximum out-of-pocket costs.
  • Co-insurance: a part of the cost (or percentage of the total bill) for health care services or prescriptions that a person with health insurance must pay after they’ve met their deductible and until they reach their out-of-pocket maximum.
  • Co-pay: a fixed amount of money that someone with health insurance pays each time they get certain health services or prescriptions. Sometimes, co-pays don’t count toward your yearly deductible. Instead, you must keep paying these co-pays until you have reached your out-of-pocket maximum for health care costs.
  • Deductible: a set amount of money that an insured person or policy holder pays for their medical care in a year. Once you pay this amount, the insurance company starts to help pay for a portion of your health care. The insurance company will pay for some health care, like preventative care, even before the deductible is met.
  • Health insurance premium: This is the money you pay to buy a health insurance policy for you and your family (like your spouse and children). You usually pay this cost every year, broken down into 12 monthly payments.
  • Maximizer: a clause in a health insurance policy that sets your out-of-pocket costs equal to the maximum value of a patient assistance program. These costs are typically spread out over a year but don’t count toward your annual deductible and maximum out-of-pocket obligations.
  • Out-of-pocket maximum: the most money you have to pay for covered health care services in a plan year. After you spend this amount on deductibles, copayments, and co-insurance, your health plan pays 100 percent of the costs of covered benefits.
  • Patient assistance programs: programs that provide financial assistance (discounts or subsidies) to people who cannot afford the cost of the prescription medicine(s) the company produces. These programs are offered by pharmacy organizations, non-profit foundations, state governments, and pharmaceutical companies. When sponsored by a company, the assistance is only for the drugs produced by that company.
  • Pharmacy benefit managers (PBMs): companies that negotiate what insurance companies will pay pharmacies and pharmaceutical companies for drugs, including discounts and rebates. PBMs often are also responsible for establishing formularies (list of which drugs insurance will or will not cover) and processing and paying bills for prescription drugs. PBMs also own specialty pharmacies that dispense medicines.
  • Policies: the written agreements that detail what amounts or portions of medical or pharmacy costs will be paid by the insured (buyer of the policy) and the insurance (seller of the policy) toward specific medical expenses.

Become a 50-State Network Advocate

Joining the 50-State Network takes just a few minutes, and then you will be plugged into a nation-wide and state-by-state community of other like-minded people who are living with chronic conditions (or love someone who is). Together, we share our strength, experience, wants and needs as a patient community so that we can raise our voices with our healthcare decision-makers. Sign up today.

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