Kathy Sego, a choir teacher from Indiana, sat before the Senate Finance Committee in late January and tried to show lawmakers how drastically drug pricing needs to change.
Sego told senators how her diabetic son secretly rationed his insulin after he realized it cost his insured parents $1,700 per month. She described his sharp and sudden weight loss and spiraling health problems. She explained what it was like to take a trip to Hungary and see a $10 price tag for the same vial of insulin that cost them $487 back home.
She detailed how she and her husband each work more than 80 hours per week and stretch out their payments to the point their electricity got cut off so they could buy the medicine.
Her voice cracked as she laid out her son’s insulin-dependent future. “He wonders—can he pay for an apartment?” Sego said, her voice wavering as she began to cry. “Utility bills? His student loans? Will he be able to have a social life? Take a girl on a date? The thing is, it really comes down to this: Hunter needs insulin to live, but should that need for insulin keep him from living?”
Then lawmakers and experts got to work. That meant Sego sat for hours mostly in silence, as analysts seated beside her talked about innovation, competition and inflation caps.
The scene is familiar on Capitol Hill, where the pageantry played out in hearing rooms fades into a cautious dance.
It’s been nearly four months since an energized Democratic majority in the House started 2019 with promises of sweeping reform of drug prices, supported by the ambitious goals of the Trump administration and milder assurances of the GOP-led Senate. Although lawmakers emphasize that it’s still early in the 116th Congress, and reiterate their agreement to do something big, the window to develop their ideas is narrowing.
Leading lawmakers have yet to decide what “something big” would look like. They certainly haven’t cohesively rallied around the boldest Trump administration ideas, such as banning rebates for pharmacy benefit managers and tying high Medicare Part B drug prices to their costs in foreign countries that pay less. And there are plenty of factors in play to shrink Congress’ drug-pricing ambitions down to size.
Last week brought a fresh reminder of the pharmaceutical industry’s massive war chest and targeted lobbying. Early 2019 fundraising receipts for members of Congress show a trail of pharma donations to key committee leaders.