They are hurting healthcare affordability and quality, says Rep. Buddy Carter
Representative Buddy Carter, BSPharm (R-Ga.), a pharmacist and former pharmacy owner, on Friday escalated his longstanding battle against pharmacy benefit managers (PBMs), releasing a report critical of the industry and calling for changes in the PBM rebate system.
"What we're trying to achieve in healthcare is accessibility, affordability, and quality," Carter said at a press conference in the parking lot of a pharmacy here. "PBMs are hurting accessibility, affordability, and the quality of healthcare."
Carter issued a report entitled "Pulling Back the Curtain on PBMs: A Path Towards Affordable Prescription Drugs." The report included stories from patients who had experienced difficulties in accessing their medications due to PBM rules or excessively high drug costs.
The report also urged support for a regulation issued by the Trump administration -- but delayed by the Biden administration -- that would force drug company rebates to be passed along to patients at the point of sale, rather than being absorbed by the PBMs. And it urged support for legislation now in Congress, such as the Pharmacy DIR Reform to Reduce Senior Drug Costs Act and the Drug Price Transparency in Medicaid Act, that would curb some PBM authorities and force them to be more transparent about their pricing strategies.
At the press conference, speakers -- several of whom also appear in Carter's report -- outlined the issues they were having receiving their medications. Jessica Wofford, a nurse who has had Crohn's disease for 15 years, said that her monthly 1-ml injection of ustekinumab (Stelara) is $24,900. "My insurance company is wonderful in that they will pay $17,000 of this, leaving the rest of the $7,000 to me to figure out how I'm going to pay for it."
Wofford said she is enrolled in two copay assistance programs to help make up the difference. "I'm enrolled in the second one because I maxed out of the first one in March of this year ... And the problem with these kinds of medications is that they're authorized by your insurance, [but] your insurance will only authorize this through one particular specialty pharmacy. You cannot shop these medications; you cannot go online, unfortunately, and find better prices."
Terry Wilcox, CEO and founder of Patients Rising NOW, a group of patients advocating for better access to treatment, said that she recently went to a pharmacy to pick up ear drops for her son. "They said, 'That'll be $210.'" When Wilcox said the price wasn't usually that high and that the GoodRx app quoted a price of $80, the pharmacy told her she couldn't pay that price because it wouldn't count toward her deductible.
"I was like, 'Why would I want to pay two and a half times more for something just so that it can count towards my deductible? I want this,'" she said. "So I ended up paying that price. But that's the shenanigans you go through."
Elisa Comer, a healthcare administrator, said "there should never be a case where a pharmacist or physician has to tell a mother she can't [access] medication for a child with juvenile arthritis," sending the child back into a wheelchair for the next year and a half. "These are true stories," said Comer. She said that she herself fought so hard with PBMs one year that "I had to give up and go off my medication."
"I have a message for you PBMs out there: we're on to you and we're coming for you," she said. "These are hills that we are willing to die on. And we're tired of you hijacking our healthcare. And a word for my chronic illness family -- you stay the course, you stay in there and fight. 'Let's roll.'" Her last remark a quote from Todd Beamer, a passenger on one of the hijacked September 11, 2001 flights, who said "Let's roll" before he and some fellow passengers stormed the pilots' cabin in an effort to derail the hijackers.
Asked for their response, the Pharmaceutical Care Management Association, a trade group for PBMs, sent a statement saying that "Americans consistently reject the use of blame game tactics, especially when real patients' health and lives are at stake. This is especially true when it comes to blaming PBMs, the one entity reducing costs in the healthcare system."
"An overlooked reality is that, for the majority of Americans, average patient out-of-pocket costs are actually decreasing thanks to PBM's [sic] proven ability to negotiate discounts from pharmacies and drug manufacturers on behalf of patients," the statement said.
"Without the affordability and care coordination provided by PBMs, patients' access to their medications will be limited. We urge other members of the prescription drug supply and payment chain to put down their swords, and join us in making prescription drugs more affordable for more Americans."
About the Author:
Joyce Frieden oversees MedPage Today’s Washington coverage, including stories about Congress, the White House, the Supreme Court, healthcare trade associations, and federal agencies. She has 35 years of experience covering health policy