As Congress struggles to fix America’s broken healthcare system, people with diabetes should know that two of our own are now in the U.S. House of Representatives.

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Dear Diabetes Community: please meet Reps Kim Schrier (D-Washington) and Daniel Lipinski (D-Illinois), both of whom have type 1 diabetes. These two are the only T1Ds in Congress currently, though several others have children or family members with diabetes, and naturally both are members of the bipartisan Congressional Diabetes Caucus. In separate phone interviews, both conveyed how their personal experience with managing a chronic condition gives them instant credibility when they talk to colleagues about healthcare issues including skyrocketing costs.

“My diabetes has made me aware of the vital importance of health insurance and the need to deal with high drug prices,” says Lipinski, who’s been in Congress since 2005 and was diagnosed with T1D as an adult about two decades beforehand. “I know very well how much insulin costs,” he added, as he’s required to buy coverage on the Affordable Care Act’s (ACA) exchanges.

Schrier’s expertise comes not only from her diabetes, which she’s had since she was a teenager, but also from 17 years' experience working as a pediatrician before she joined the U.S. House in 2019 -- notably, as the only female physician in Congress and the first-ever pediatrician.

In the aftermath of a slew of Congressional hearings on drug prices and a House Energy and Commerce subcommittee specific to insulin prices meeting today (April 2), it’s a good time to learn about these two PWDs (people with diabetes) at the center of the political storm over healthcare.

 

Two Politicians' Diabetes Journeys

As a freshman Congresswoman now, Schrier's journey into politics was shaped specifically by her own healthcare and career trajectory over the years. She was diagnosed with T1D in 1985 at age 16 with “typical symptoms of extra thirst and frequent urination.” Fortunately, her mother, a schoolteacher, recognized the symptoms and brought her to the doctor when her blood glucose was about 250 mg/dL -- not yet dangerously high.

At the time, home blood glucose tests had just become available and she says, “I did a lot of those” before getting an insulin pump in 1990 and, more recently, a CGM (continuous glucose monitor). In fact, her diabetes doctor and role model growing up was well-known endo Dr. Fran Kaufman, who Schrier credits for inspiring her to become a pediatrician.

Managing diabetes in her new job hasn’t been easy. “I must walk five miles a day” to keep fit, Schrier says, adding that she carries around granola bars to stave off low blood sugars. "It’s also been hard to adjust to the three-hour time difference” between DC and her home base in the central part of Washington state, as traveling back and forth affects her basal requirements.

For his part, Lipinski was diagnosed in 1984 when he was 23 and working as a systems analyst for Swissair in Zurich, Switzerland. A local doctor detected his T1D after he lost a lot of weight and had one episode where “my blood glucose was so high I almost passed out,” he recalls.

For 27 years, Lipinski did multiple daily injections and had what he describes as pretty good control. He then switched to an Omnipod pump three years ago. He says the pump and a CGM have made his D-management much easier. He also touted the value of regular exercise for diabetes management, saying that he runs or lift weights six days a week.

 

Opposing Political Backgrounds

Of course, sharing diabetes does not mean that these two share political views.

Lipinski, the son of former Congressman Bill Lipinski, has been in the political arena for much of his life. He interned for politicians during the 90s and taught political science before joining Congress. 

He leans more to the right on some issues. Lipinski has long been “pro-life” and even voted against the original ACA in 2010. A member of the centrist, “fiscally responsible” Blue Dog Coalition, during the 2018 primaries he was opposed by key interest groups that supported Schrier in her race, including Indivisible and Planned Parenthood.

In contrast, Schrier had never been in politics before. But distressed about Republican calls to eliminate the ACA, she decided to enter the political arena for the first time and successfully ran for Congress in 2018. She made healthcare reform her signature issue, and campaigned for making Medicare a public option available to everyone.

Yet, based on what the two of them shared with me, their current views on what to do about healthcare and prescription drug prices are not too far apart. 

 

Views on Healthcare Reform

As far as the Big Picture is concerned, “I see a huge benefit to eventually achieving a single-payer system,” Schrier says. Yet right now, “our first priority needs to be shoring up the Affordable Care Act.” Her initial priorities include ensuring free coverage of the first few outpatient visits and protecting the ACA’s 10 essential health benefits, including coverage of pre-existing conditions, which is crucially important to PWDs.

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Although Lipinski was initially opposed to the ACA, he has voted many times to preserve and fix it since, and says “we should be working to make sure it works better for everyone.”   

While he wouldn’t commit himself to Medicare for All and was concerned about the cost, he said he was “open to the possibility.” He also has an unorthodox idea that seems sensible to me: "When people with diabetes inject themselves with insulin, that is preventive care. So why shouldn’t (insulin) be covered that way by insurers?“

Good question, Congressman… good question, indeed.

 

Calling Out Big Pharma

Both of them have heard from constituents with diabetes who’ve had trouble paying for insulin. And neither hesitates to chastise drug manufacturers for the high cost of prescription drugs.  

Schrier was not happy about Lilly’s well-publicized, widely-panned move to offer a generic version of Humalog at $137.50 per vial to some consumers. “That price is too high. It’s still artificially inflated. Based on everything I can tell, that little bottle should cost $50," she says. 

Although Lipinski comes from the business-friendly wing of the Democratic party, he noted: “I don’t see a great case that the cost of research justifies the high price of insulin. There definitely needs to be more pressure on pharma from the grassroots side.”

Both indicated that other players beside drug manufacturers -- including Pharmacy Benefit Managers -- are responsible for high insulin prices. According to Lipinski, “We definitely need to do more about PBMs and the role of rebates,” referring to the drug discounts negotiated by PBMs that clearly play a role in high insulin prices. Neither would commit to any specific PBM-related solutions, though. It’s possible that they are as daunted by the complexity of the prescription drug pricing system as the rest of us. As Schrier put it, “None of us really know how much blame to put on the pharma companies and how much blame to put on PBMs and insurers.”

That’s one reason she agrees with D-advocates who are pushing for more transparency in the drug pricing system at both the state and federal government levels.

 

What About Insulin Prices?

When asked about the pending legislation on lowering prescription drug prices that have been introduced on Capitol Hill, neither Schrier nor Lipinksi would commit to any specific bills at this point. Clearly, they’re still trying to figure out steps to make drugs more affordable that are both effective and politically feasible.

Lipinski said he supports encouraging prescription drug imports from what he called “safe countries” like Canada, and is “willing to look at pegging the prices of prescription drugs in the U.S. to their prices overseas.”

Schrier is open to both of those ideas and said she was looking into them. She wasn’t sure that encouraging Canadian imports would have much impact, though, since people can already bring back drugs from north of the border for personal use. “I had patients who were going to Canada to get EpiPens for asthma,” she recalls.

 

Cautious Optimism on Diabetes Legislation

Talking to them about atrociously high insulin prices and broader healthcare reforms prompted hope that something positive is on the way from Congress.

Lipinski said he thinks it’s likely that Democrats in the House “will move on legislation to fight the high cost of prescription drugs. There have been discussions in the Democratic Caucus and we are trying to come to a consensus.” 

Schrier thinks there is a chance for bipartisan consensus on high prescription drug prices and other problems. She said, “colleagues I’ve spoken to on the other side of the aisle are equally concerned” about our healthcare system.

You might not agree with either of them on every issue. But if you have diabetes, you should be glad they are both fighting for our D-Community in Congress.