On July 24th, the Infusion Access Foundation invited 11 people living with chronic illnesses and their care partners to join them in Washington, D.C., for our annual Hill Day. Hill Days are incredibly empowering and impactful opportunities for constituents to meet with lawmakers and staff to share concerns and perspectives on issues that impact their lives. For individuals with chronic illnesses, it’s an opportunity to share their disease stories and explain how navigating the healthcare system has impacted their lives.
Our advocacy priorities center around what is referred to as “utilization management” techniques. Insurance companies employ these strategies to restrict access to lifesaving medications that our patient community needs. If you’ve been prescribed an infusion or injection, you’ve probably been impacted by at least one. You can see all the advocacy initiatives we’re engaged in by visiting our website. During our Hill Day, we focused on three specific bills – the Safe Step Act, the Help Ensure Lower Patient (HELP) Copays Act, and the Improving Seniors’ Timely Access to Care Act.

Step Therapy and the Safe Step Act
Step therapy, also known as “fail first,” is a tool health plans use to limit consumption and spending on specific treatments. From a patient’s perspective, step therapy looks like a doctor prescribing a particular drug, but the insurance company requires the patient to try one or more different treatments first. Only once a patient has exhausted the alternative treatments can the patient take the initially prescribed medication.
This often happens when the medication you’re trying to get is newer or more expensive, and your insurance company says that you must try a different medication first. If you don’t respond to it, then you may be eligible for the other drug. The Safe Step Act would amend the Employee Retirement Income Security Act (ERISA), which regulates employer-based health plans, to require these plans to provide an exception process for any medication step therapy protocol.

Copay Assistance and the HELP Copays Act
Many individuals on infusion therapies take advantage of copay assistance programs offered by drug manufacturers or charitable foundations. In response, insurers use copay accumulator or maximizer policies to limit how much third-party cost assistance, like copay cards, counts towards the patient’s out-of-pocket expenses. Patients using a copay card may be surprised to receive a bill for their copay or cost share of their medications because their insurance company didn’t “count” the money they received from the copay assistance program towards the patient’s out-of-pocket expense or deductible. In the case of a maximizer program, the insurer will take the copay assistance but evenly apply the maximum value throughout the plan year, preventing patients from reaching their deductibles or out-of-pocket maximum.
The HELP Copays Act (S.1375/H.R. 830) would require federally-regulated health insurance plans to count the amounts paid by, or on behalf of, an individual toward that individual’s deductible, co-insurance, co-payment, or out-of-pocket maximum. It would ensure that all payments count, whether third-party payments, financial assistance, discounts, product vouchers, or any other reduction in out-of-pocket expenses. The legislation would also close a loophole used by employer health plans that allows them to deem certain drugs non-essential and abstain from counting any cost-sharing contributions for those drugs towards patient deductibles or out-of-pocket maximums.

Prior Authorizations and the Improving Seniors’ Timely Access to Care Act
A “prior authorization” is a pre-approval requirement by health insurers for certain healthcare services or treatments. The insurer decides whether the services prescribed are medically necessary before the patient receives them. Ultimately, this causes patients to wait for their doctor’s office to write a letter stating why treatment is needed for a patient and then for the insurance company to decide whether they agree it is necessary. This process can take a lot of time and cause unnecessary and possibly dangerous delays. The Improving Seniors’ Timely Access to Care Act (S.4532/H.R. 8702) would modernize and streamline prior authorization processes in Medicare Advantage plans. This bill would require that process to go faster so patients can get the treatment they need more quickly.

The Impact of Our Patient-Led Advocacy
The Infusion Access Foundation patient advocates not only learned what each of these bills would do to improve their lives but also the value of sharing their stories. From acing prior authorizations to dealing with demanding step therapy protocols to being denied the full benefit of their copay assistance, sharing one’s story can help highlight these policies’ impact on someone’s life. Unfortunately, we could not meet with legislative offices due to security concerns. However, our advocates had the opportunity to learn even more about these topics thanks to our D.C. government strategy partners and local guest speakers from the patient advocacy world. The Infusion Access Foundation team answered questions, led discussions among the advocates, and even acted out a mock congressional visit. The next step for our advocates is to participate in the Infusion Access Foundation’s ”Virtual Hill Days,” allowing them to meet their representatives and staff from the comfort of their homes.
Get involved with our advocacy initiatives here or by emailing info@patientaccess.org.
Written by Alicia Barron, Infusion Access Foundation Executive Director