The National Hemophilia Foundation (NHF) today released results from a new national online survey of registered voters that illustrates the importance and impact of patient copay assistance programs on patient affordability against the backdrop of the COVID-19 pandemic. The NHF survey, National Registered Voter Sentiment on Patient Copay Assistance Programs, found that 86 percent of all registered voters surveyed believe the government should require copay assistance to be applied to a patient's out-of-pocket costs. Copay assistance includes coupons, discount cards, and other financial assistance programs provided by manufacturers and nonprofit organizations to help patients afford their prescription drug costs. Applying copay assistance to out-of-pocket costs would lower the total amount of money patients must pay for their prescription drugs throughout the course of a year.

The NHF survey was conducted among 1,000 registered voters nationally and was fielded by Public Opinion Strategies (POS), a leading national political and public affairs research firm.

“Registered voters agree that patient copay assistance programs play a critical role in improving treatment affordability for patients with chronic diseases and that our federal legislators and regulators should count the value of these programs towards a patient's out-of-pocket cost burden,” said Kollet Koulianos, senior director of payer relations for NHF. “In the midst of a global pandemic, our government should be doing all it can to ensure patients with hemophilia and other complex chronic conditions do not have any financial barriers to accessing their lifesaving treatments.”

A number of key findings in the NHF survey illustrate broad support for patient copay assistance programs and the positive impact these programs have on patients with chronic conditions:

  • More than 80 percent of survey respondents across political parties believe the government should require copay assistance to be applied to patients' out-of-pocket costs.
  • 72 percent of survey respondents believe many chronic disease patients would no longer be able to afford their medications if the government does not require copay assistance to be applied to patients' out-of-pocket costs.
  • 42 percent of survey respondents with a chronic health condition say they or someone in their household has not been able to afford the out-of-pocket costs of their health insurance copay in the past year.
  • 46 percent of survey respondents say that, if financial assistance did not count towards their out-of-pocket costs, there is either no way they could access their medications, they would have to deplete all of their savings, and/or take on credit card debt.

In May, the Centers for Medicare & Medicaid Services (CMS) issued a final rule, the Notice of Benefit and Payment Parameters (NBPP) 2021, that gives health insurers and pharmacy benefit managers (PBMs) complete discretion on whether or not they will count manufacturer copay assistance towards a patient's out-of-pocket cost burden. A federal bipartisan bill before the U.S. House of Representatives (H.R. 7647), which currently has 32 co-sponsors, would delay the copay assistance component of the CMS final rule, until after the coronavirus public health emergency is declared over.

Additionally, a separate CMS proposed rule around Medicaid best price, actually acknowledges that manufacturer copay assistance can help patients access their medications, even stating that the copay assistance is meant for the benefit of the patient but instead goes to the benefit of the insurer or PBM. Despite this acknowledgement, the CMS proposed rule falls short of delivering any patient protections, by placing the burden on manufacturers to ensure the benefit of copay assistance goes to the patient, which is virtually impossible due to the distressing lack of transparency from insurers and PBMs.  

“Federal policies such as the Medicaid proposed rule issued in June, and the NBPP final rule 2021, can create significant barriers for chronic disease patients who rely on copay assistance as the life line to accessing their treatments to begin with, let alone amid the ongoing health and economic challenges of the COVID-19 pandemic,” said Koulianos. “These CMS policies ignore the broad support American voters have for copay assistance programs, whether or not they personally rely on them to access their medications. We urge the White House, HHS, and CMS to protect patients from additional out-of-pocket cost burdens.”