A screenshot from the White House Twitter feed shows President Biden meeting with advocate Gail deVore to discuss the insulin pricing crisis.Share on Pinterest
Screenshot of White House Twitter video

Insulin pricing remains a hot issue in America, with President Joe Biden including it in his State of the Union address in March 2022 and making it a top discussion point among federal legislators.

This follows President Biden’s efforts in his first year, when he sat down with grassroots #insulin4all advocates to talk insulin affordability in the White House Oval Office.

Congress is now debating a federal insulin copay cap of $35 for those on Medicare as well as private employer-based insurance plans, and there’s a new effort underway by a nonprofit pharma company to develop low priced generic insulin by the end of 2024. So, some say there’s quite a bit to be excited about.

Yet, some diabetes advocates believe it’s mostly for show, with little real change.

“We applaud President Biden’s continued efforts to address healthcare affordability, but we are frustrated by his partisan approach to drug pricing reform,” said George Huntley, CEO of the Diabetes Leadership Council and a longtime type 1 diabetes (T1D) advocate himself. “[But] we continue to see all talk and no action… We’ve had enough talk, we need to stop pharmacy benefit managers and insurers from pocketing rebates. Congress must prioritize rebate reform this year.”

During his State of the Union address on March 1, 2022, President Biden specifically called out insulin pricing as a must-do policy change. With his down-to-earth charm, the president welcomed 13-year-old Joshua Davis who lives with T1D, and who’d attended the address as a guest of First Lady Dr. Jill Biden. Davis is a young advocate who’d previously attended JDRF Children’s Congress, talking with Congress and legislative leaders about diabetes policy change — including insulin pricing.

The president is pressing for Congressional action on the Affordable Insulin Now Act, introduced in February 2022 by a group of Democrats including Sen. Michael Bennet (D-Colorado) and Sen. Raphael Warnock (D-Georgia).

While the legislation aims to help those on Medicare plans as well as insurance plans through their employer, it does not address those using insulin who do not have insurance. That remains unaddressed, even as census and other data show that about 10 percent of people in the United States do not have health insurance.

Roughly 54.4 percent of insured Americans have employer-based plans, and more than half of those individuals are subject to high deductibles that often mean they’re forced to pay outrageous list prices for at least part of the year. This means a federal insulin copay cap — particularly one that apples to people with the common ERISA-regulated health plans — would have the most impact across the board, even if it doesn’t achieve the #insulin4all dream of helping everyone who needs it.

Among those voicing support for Biden’s advocacy, the JDRF praised the president and urged Congress to take action. The diaTribe Foundation has also launched an effort supporting a $35 copay cap on insulin.

This latest plan follows an earlier policy attempt within Biden’s failed Build Back Better (BBB) plan, which all but died in 2021 after opposition stalled the efforts.

In Biden’s 2021 BBB policy announcement, the president echoed what the Diabetes Community has been saying for years: “Healthcare should be a right, not a privilege.”

Insulin prices were highlighted in the White House fact sheet on Biden’s plan, with an independent policy analysis cited on how “insulin prices could fall by hundreds of dollars on average.”

“Pharmaceutical companies do groundbreaking, lifesaving work, but there is a difference between developing clinical breakthroughs and driving up prices for the drugs Americans rely on. Change is sorely needed,” the White House said in a statement about Biden’s plan in 2021.

That is where longtime diabetes advocate Gail deVore from Colorado came into the picture, traveling more than once to Washington D.C. to share her story with Biden personally discuss insulin pricing regulation.

She first met with Biden on Aug. 2, 2021, for a one-on-one chat in the Oval Office, just days before he unveiled a big policy proposal that promised to change the way drug prices are determined for Medicare and influence private insurers.

“[Biden] knows what’s right and true, and insulin pricing is one of those things,” deVore told DiabetesMine. “Insulin shouldn’t be this expensive, nor should heart medication or an EpiPen or so many other drugs for chronic conditions. There absolutely is a disconnect.”

Gail deVore

Diagnosed with T1D when she was 11 years old, deVore is a longtime activist who’s well-known through diabetes advocacy circles. She’s testified before Congress on the issue of insulin pricing, and advocated at both the state and federal levels through the years.

She isn’t the first diabetes advocate to ever meet with and talk diabetes — and insulin pricing specifically — with a sitting U.S. president. But she’s one of a very select few, and likely the first to have this type of grassroots #insulin4all advocacy focus in such a personal conversation in the Oval Office.

The opportunity to meet with Biden came out of the blue, she said. deVore volunteers with the nonprofit organization Patients for Affordable Drugs (PFAD) and on short notice, she was asked if she’d be willing to fly to Washington D.C. At first, it was supposed to be a public meeting in the Rose Garden, where she’d introduce President Biden and say a few words on the topic of prescription drug costs and insulin pricing.

Plans changed after her initial vetting Zoom call with the president’s media team. They decided it’d be a personal meeting between her and Biden in the Oval Office. So, deVore and her husband flew to D.C., navigating some airport security headaches before the big day.

On Aug. 2, 2021, deVore met with Biden for a full 30 minutes. It was on the schedule for 5 to 10 minutes, she jokes, but the president didn’t want to cut it short. They shared personal stories, he showed her photos from behind the Resolute Desk, and they walked around parts of the White House while talking insulin prices.

A film crew was also there, which led to this almost 90-second clip of their discussion in the Oval Office.

Knowing she’d forget to say some points in the moment, deVore said she scribbled notes in her hand. “I couldn’t make the point strong enough that no matter one’s socioeconomic status in life, insulin shouldn’t cost this much. I said this several times.”

She brought her “props bag” full of diabetes gear, and showed him those supplies and insulin while sitting across from him on the sofa in the Oval Office. She also talked about the struggles of others with diabetes, including 7-year-old Frankie Hodgson in Colorado, who she knows personally, and another T1D in Kansas who falls in the “Medicare donut hole” and therefore isn’t eligible for any of the patient assistance programs that pharma companies offer.

Biden later mentioned Frankie’s name, including her point that she’d wanted her mom to have deVore ask the president at the White House: “Can he make the insulin price just $10?” She chose that number because that’s her allowance, deVore said.

deVore also told DiabetesMine that she talked with the president about how Pharma often points to their research and development needs, and how capping insulin prices or lowering drug prices could threaten that funding. But deVore pointed out how much drug development money comes from the National Institutes of Health (NIH) and other taxpayer-supported funding, meaning it isn’t directly tied to the prices charged to patients.

“I didn’t use the word ‘BS’ with the president, but he picked up on what I meant, and he gave a look that he didn’t know that,” she recalled. deVore also said she quoted insulin co-discoverer Dr. Frederick Banting, who famously believed “insulin belongs to the world” and didn’t want corporations to greedily seek profit from such a critical life-sustaining medicine.

deVore said she appreciates being able to tell Biden about her volunteer advocacy work in Colorado pushing for state copay caps on insulin, as well as how certain insurance coverage shouldn’t be required for people to afford something they can’t live without. She said she feels confident that her meeting with Biden made a difference and will influence policy change.

“He really heard me,” she said. “He was so open, so kind, so wanted to make a connection. I honestly believe that his whole heart is in this proposal, and that he can help persuade people on this.”

On Aug. 12, when Biden announced his plan, deVore was allowed to run the White House Twitter account for a few hours leading up to his speech. She got to sign off on all the official tweets talking about insulin and drug pricing — including one mentioning her directly!

“Insane isn’t quite the right word, but it’s akin to a once in a lifetime experience that you just can’t prepare for,” deVore said. “I was truly in awe of being there, and being trusted to speak on behalf of folks who need help.”

President Biden on Gail deVore

“She said she doesn’t worry about becoming blind or her blood sugar dropping dangerously low — the natural worries of anyone with type 1 diabetes. She worries about being able to pay for her prescription drugs.

“During our conversation, she pulled out a vial of insulin from her bag. In 2001, she said, that single vial cost $32 a bottle. Today, that exact same bottle, with the same exact formula — no changes — costs $280 per bottle.

“Gail and her husband work hard. They spend wisely. But because of the cost of her prescription drugs, her husband may not be able to retire. They drive the same car, she said, she’s had for 17 years, unable to afford repairs or a new one. And Gail is not alone.”

Later in 2021 as legislative action was still happening on the BBB plan, deVore traveled to D.C. again and met with White House leadership on insulin pricing advocacy.

Of course, it’s up to Congress to make this reality.

Just how this happens remains up in the air, but it could come in many different forms. One route is for Congress to include this Medicare negotiation within its massive budget reconciliation process. Another possibility is the bill H.R. 3, otherwise known as the Elijah E. Cummings Lower Drug Costs Now Act, which would allow Medicare to negotiate lower drug prices on behalf of all Americans. This bill was reintroduced in the 117th Congress in April 2021 after passing the House in the previous session.

There is already widespread support for this idea within Congress, but it’s likely partisan politics will play into the discussions and how this all moves forward.

The intersection of politics and insulin pricing policy is quite a frustrating issue for many diabetes advocates — particularly since President Biden took office in 2021, and many people began believing that the new president had somehow reversed a change made by the former president and actually raised insulin prices.

That’s simply not accurate.

Did Biden reverse Trump’s insulin price changes?

No, he did not.

While it’s a bit convoluted, Trump had made several moves through Executive Order in the final years of his presidency — one involving federally qualified health centers (FQHC), and another pushing for Medicare beneficiaries to get lower insulin prices based on an average of some other countries. Neither of those orders took effect, and the FQHC was eventually rescinded after policy reviews found it too problematic as it would create administrative burdens stopping those centers from helping people.

The so called “fair nations” order was also never implemented, after a federal judge blocked it and described it as being “unlawfully rushed.”

Bottom line: Any claim that Trump actually lowered insulin prices from those orders is wrong. During Trump’s presidency, a big Medicare policy change did happen for some senior citizens in 2021 and the IRS also changed its policy allowing insurance companies to decide if they wanted to exempt insulin from deductibles in high deductible health plans. Those changes were implemented, and remain in effect.

Advocates push for honest reform

Of course, for those like deVore who continue advocating on this important issue, misinformation and a lack of understanding by many people — including policymakers — remains problematic in trying to voice the need for these changes.

deVore may be the most recent diabetes advocate to meet with a U.S. president, but she isn’t the first. DiabetesMine reported in 2020 how longtime T1D advocate Paul Madden from Boston, Massachusetts, was a part of a big Medicare-related policy announcement by former President Donald Trump; they appeared together at an event where Madden spoke briefly.

Afterward, Madden told DiabetesMine that even if one doesn’t agree with a particular president — their personality or politics — it still makes a difference talking with individuals in such powerful roles.

“Even if it’s a PR stunt… it still has the potential to raise awareness on the issue of insulin pricing and even may have the potential to push policy change as well as cost savings,” Madden said at the time. “[Patients] are looking to influence policy discussions. It’s about investing in that idea.”

That’s exactly how deVore sees it, too, she said.

Following her Biden meeting, she met with an executive at one of the big three insulin manufacturers to discuss insulin pricing. While they may not fully agree or see eye-to-eye, it’s about engaging in these discussions respectfully, so the dialogue can continue. Maybe next time, deVore and others can be asked back for further testimony — whether it’s at the White House, before Congress, or with Pharma leaders.

“Not one thing has changed on prescription drug pricing since my meeting,” she said. “But we can remind people that their voice counts, that they can make a difference by picking up the phone and calling a Congress person. Our stories, if we tell them effectively, make a huge difference in our futures.”