The call from the White House came in early on the morning of Oct. 28, 2021. The prescription drug reforms to lower prices that AARP had been fighting for were not included in the Build Back Better budget bill’s framework being released that day.
Within the hour, AARP Chief Executive Officer Jo Ann Jenkins issued a statement saying the organization that represents nearly 38 million older Americans was “outraged” that the drug provisions were being omitted. And AARP vowed that the fight to allow Medicare to negotiate the prices of prescription drugs, to cap out-of-pocket expenses for Part D enrollees and to hold Big Pharma accountable for out-of-control price increases would continue.
AARP wasted no time making good on that promise.
“We agreed that state directors would drop everything and get on this. Calls started going in to the White House and congressional leaders by 10 a.m. We had never responded to something so quickly,” recalls Nancy LeaMond, AARP executive vice president and chief advocacy and engagement officer. Over the next few days more than 400,000 communications from AARP members and activists made it clear to leaders in Washington that taking Medicare prescription drug reform out of the budget package was unacceptable. Members emailed, called, tweeted and posted on Facebook and other social media channels.
“These were real people calling congressmen,” LeaMond says. “These were people who were fed up with paying such high prescription drug costs.”
The pressure worked. Five days later, on Nov. 2, President Biden issued a statement that showed that Medicare negotiation of prescription drugs and the other elements of AARP’s priorities were back in the bill. Less than two weeks after that, on Nov. 15, the U.S. House of Representatives passed the measure. Those same elements are included in the Inflation Reduction Act of 2022 that President Joe Biden signed into law on Aug. 16.
“This bill will save Medicare hundreds of billions of dollars and give seniors peace of mind knowing there is an annual limit on what they must pay out of pocket for medications,” Jenkins said after the Senate vote.
LeaMond attributes AARP’s success to the association’s staying power and its members and supporters. “Very few organizations can stay at such a fever pitch on an issue for so long a time,” she says. Between 2019 and this summer, AARP spent $60 million on advertising, collected 4.3 million signatures on petitions urging Congress to act, generated 3.6 million emails to lawmakers and flooded congressional offices with hundreds of thousands of phone calls.
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A fight for the ages
Although Oct. 28, 2021, was a crucial day in this effort, this is a battle that AARP had been waging for years. In fact, the need to make medications more affordable was first raised by AARP founder Dr. Ethel Percy Andrus way before the Medicare program was even created. “It has long been recognized that one of the greatest expenses for retired persons living on restricted budgets is the high cost of drugs and prescriptions,” said Andrus, who testified before Congress in 1961 about the high price of medications.
“This has been part of our DNA as an organization from the very beginning,” says Bill Sweeney, AARP senior vice president for government affairs. He notes that one of the main reasons AARP took on this fight and stayed with it is that high drug costs were and continue to be top of mind for members when they are polled on issues, when they call AARP or when they participate in association-sponsored events. “We were hearing from our members that this was something that was really causing them pain, and we had the opportunity to do something about it.”
Building on Part D victory
AARP’s first win on prescription drugs came in 2006, when Medicare implemented the prescription drug benefit known as Part D that Congress had added to the program in a 2003 law. But that added benefit came with a trade-off. The law specifically prohibited Medicare from negotiating prices, so there was no effective way to control big pharmaceutical companies’ runaway increases on so many lifesaving medications.
Beginning in late 2018 it became clear that tackling the high cost of prescription drugs had support from lawmakers on both sides of the aisle. Senators and representatives were promising their constituents they would do something. Then-President Donald Trump indicated a willingness to act in his State of the Union address.
Again, AARP took action, creating the “Stop Rx Greed” campaign. State offices and members coast to coast were enlisted to begin a steady drumbeat to convince lawmakers that now was the time to act. The tactics were varied and unconventional. For example, on Oct. 31, 2019, lawmakers in all 50 states and on Capitol Hill heard the roar of AARP’s Tyrannosaurus rexes (known as the Rx T. Rex). T. Rex costumes were sent to all 50 states. AARP volunteers donned red “Stop Rx Greed” T-shirts and joined the rexes for the organization’s official “Take a bite out of Rx prices day.”
A new campaign emerges
Like all aspects of American life, the COVID-19 pandemic meant that AARP had to put some parts of the Rx campaign on hold. But it didn’t stop the advocacy effort. The association continued to talk with lawmakers and to make the case for lower prescription drug prices, even as it concentrated on making sure its members had all the information they needed to beat back the pandemic.
By 2021, AARP got back into the prescription drug fight in a big way, launching its “Fair Rx Prices Now” campaign. Among the tactics was the “Show Your Receipts” effort, by which Americans downloaded their prescription drug bills so lawmakers could see firsthand how much it costs consumers to take their medications. AARP held a people’s hearing, at which individuals told their stories of how difficult it was to afford their prescription drugs. The virtual event drew a constant stream of comments in the chat room, with people lamenting the lack of action to lower prices.
States take steps
As pressure on Washington heated up, action continued on the state level, as well. AARP has consistently waged a two-front advocacy campaign designed to get both the federal government and the states to pass legislation to crack down on high prices.
“We’ve seen a tremendous amount of activity and bills passed in state legislatures all across the country — in red states and blue states and purple states,” Sweeney says. And that has helped AARP build momentum at the national level.
Since 2019, AARP state offices have helped pass more than 100 state laws relating to the high cost of prescription drugs. A number of state legislatures passed laws establishing drug affordability boards, which have the authority to evaluate the cost of drugs and to make recommendations on how to get prices down. Many states passed measures requiring drug companies to be transparent about their prices, and others adopted legislation to ensure that pharmacists can help consumers find lower prices for their medications.
Even with the passage of the Inflation Reduction Act of 2022, AARP officials say this doesn’t mean the end of the campaign for drug-price reform.
“We’re going to keep fighting to pass bills in state legislatures, and we’re going to keep fighting at the federal level for other measures that will lower drug prices,” Sweeney says.
“AARP pulled out all the stops to achieve this historic victory,” Jenkins told supporters in a video message. “And we will continue fighting. We will not back down until all Americans 50-plus can afford their medications.”
Dena Bunis covers Medicare, health care, health policy and Congress. She also writes the Medicare Made Easy column for the AARP Bulletin. An award-winning journalist, Bunis spent decades working for metropolitan daily newspapers, including stints as Washington bureau chief for the Orange County Register and as a health policy and workplace writer for Newsday.
Editor's note: This story has been updated with the latest information.