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Screenshot of White House Twitter video

Insulin pricing advocacy has made its way directly to the ears of President Joe Biden, when a grassroots #insulin4all advocate sat down with him to talk insulin affordability in the White House.

Longtime diabetes advocate Gail deVore from Colorado met with the new United States president on Aug. 2, 2021, for a 1-on-1 chat in the Oval Office, just days before he unveiled a big policy proposal that could change the way drug prices are determined for Medicare and influence private insurers.

And if that wasn’t notable enough on its own, she took control of the official White House Twitter account for several hours on the day of the president’s policy announcement.

“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 told DiabetesMine. “I was truly in awe of being there, and being trusted to speak on behalf of folks who need help.”

Biden has a plan to lower drug and insulin prices, but what he’s proposing isn’t something he can do on his own. It will take buy-in from Congress. But there’s hope, and deVore believes her meeting with the president is a sign that change is on the horizon.

Diagnosed with type 1 diabetes (T1D) when she was 11 years old, deVore is a longtime advocate 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 and private meeting in the Oval Office.

Gail deVore

This opportunity to meet with Biden at the White House came out of the blue, she says. 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 1-on-1 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, 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!

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.”

In his policy announcement, the president echoed what the Diabetes Community has been saying for years: “Healthcare should be a right, not a privilege.” Biden mentioned deVore by name and spoke about the story she shared on life with diabetes when insulin is so costly.

Insulin prices are also highlighted in the White House fact sheet on Biden’s plan, with a Congressional legislation analysis cited on how “insulin prices could fall by hundreds of dollars on average.”

This is all part of what the Biden Administration dubs the “Build Back Better” plan. It’s a multipronged proposal to fix many parts of American infrastructure, but the key part impacting the Diabetes Community involves lowering prescription drug prices by allowing Medicare to negotiate those prices.

Medicare has traditionally been allowed to negotiate on every other type of healthcare service for American seniors, but the current law prohibits Medicare from doing so for prescription drugs. Biden’s new plan emphasizes that Medicare should be able to negotiate prices for “a subset of expensive drugs that don’t face any competition in the market,” with negotiators determining a fair price for each drug and using the program’s scale to incentivize drug companies to agree to a reasonable price.

“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,” the White House said in a statement about Biden’s plan. “Change is sorely needed.”

This goes beyond just older Americans who are on Medicare, or approaching the requisite age.

A piece of Biden’s plan calls would take this to private insurers, too. Once Medicare can negotiate, a piece of the plan is to extend this Medicare negotiated price-point to employer-offered ERISA insurance plans.

There is truth to the mantra, “as Medicare goes, so go private insurers.” Medicare sets the prices for negotiated rates on drugs and healthcare services, and private insurance companies typically fall in line and use those same prices or use that as a foundation in setting their own prices for coverage plans.

“[Biden] knows what’s right and true, and insulin pricing is one of those things,” deVore told DiabetesMine. “The Build Back Better program includes the things we know are right and true for people with diabetes in the United States. 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, and as President Biden said: ‘Healthcare should be a right, not a privilege.’ We all have that right.”

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 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.

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 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.”