Why Patients Want a Patient-First Pharmacy Benefit

Patient advocates discussed the difficulties that formulary policies and lack of transparency place on those with chronic disease at an ICER sponsored webinar.

Patients should be the center of a pharmacy plan design that emphasizes transparency and the totality of care, especially for those with chronic disease, said patient advocates who participated in a webinar to discuss the Institute for Clinical and Economic Review’s (ICER) recently released Barriers to Fair Access report.

ICER’s fair access analysis found that overall major payer coverage policies for the 19 drugs that were reviewed in line with many of the organization’s criteria for fair access criteria related to cost sharing, clinical eligibility, step therapy, and provider restrictions. But ICER also found that many payers do not provide adequate transparency into clinical coverage criteria.

Related: ICER Review Leads to Formulary Changes

The administrative burden to require proof of clinical benefit and the continued steps patients have to take create barriers for patients and their families, as well as add costs and delay treatment, Mary B. Dwight, senior vice president and chief policy and advocacy officer at the Cystic Fibrosis Foundation, said during the webinar.

“We really need to rethink plan design for chronic illness,” she said. “One-size-fits-all for chronic care does not work anymore.”

She said insurance for specialty care and therapies for chronic diseases are becoming increasingly more and more expensive. “That doesn’t even begin to include all the other life expenses that come with having a chronic illness. Those are very rarely factored into by either the health insurer or other payers, and certainly not the drug manufacturers.”

For many chronic diseases, it is the totality of care that is required that can create a burden for patients, Meghan Buzby, executive director at the Coalition for Headache and Migraine Patients, said during the webinar. “When you add up the care from multiple specialists with a copay for every visit, a copay for every therapy, and navigating all of that is where we see barriers or worse, skipping therapy altogether.”

Dwight also pointed to copay accumulator programs — which do not allow pharmaceutical company coupons and copay assistance to count toward annual deductibles and out-of-pocket maximums — as being problematic for patients. “For many people with cystic fibrosis, they are often picking higher deductible plans because that is what covers the specialty care they require,” she said. “A person with cystic fibrosis now has a new, ongoing cost, and this extends the time that a patient needs to reach those financial limits for deductibles and out-of-pocket maximums. This is placing additional costs on people with cystic fibrosis that they didn’t have before.”

The accumulator programs, she said, are a symptom of a larger problem. “As health insurance plans and drug manufacturers jockey on how to manage a new era of highly effective therapies and expensive medications. These are life-altering treatments that have no value if the access is out of reach. And they are harmful for patients who have no available alternatives or other therapies.

ICER analysts in their review noted they were unable to assess many fair access criteria, including whether patient cost sharing is based on the plan’s negotiated price for a drug rather than the drug’s list price.

Dwight indicated how complicated and opaque insurance coverage is. “The lack of transparency from payers can delay access to care and add to the administrative burden,” she said. “I would like to see insurers and PBMs come to the table and have a conversation with us about the cost of care and the insurance barriers.”