Andrew Harnik/AP Photo
Sen. Susan Collins (R-ME) and Sen. Joe Manchin (D-WV), share a drink on Jan. 22, 2018.
When the Build Back Better framework was announced last October, it included provisions on climate funding, tax reform, family care, child poverty, education, workforce development, housing, and more. But practically all of that has been washed away in a storm of in-fighting, politicking, and holdouts from the most right-wing members of the caucus. What is left could miss its opportunity to be truly impactful.
As the Prospect reported last week, the remnants of the Build Back Better Act, which would be passed on a party-line vote in the reconciliation process, now includes only two provisions, both related to healthcare: prescription drug price reform and an expansion of premium subsidies. But even this version of the bill has been whittled down. The House version of drug price reform allowed Medicare to negotiate insulin prices, and placed a cap on copayments for the drug. But now it has no mention of insulin, a poster child of the failure of the U.S. pharmaceutical system to offer affordable access.
That’s because Sens. Susan Collins (R-ME) and Jeanne Shaheen (D-NH) put those provisions in a separate bill, the Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN) Act. But it’s unlikely that bill will survive a filibuster in the Senate, and advocates are urging that the insulin provisions get re-included in the reconciliation package, so that Congress doesn’t finally pass drug price reform but leave behind one of the most urgent crises in the whole system.
According to Human Rights Watch, approximately 8.2 million American adults use one or more formulations of insulin to regulate their blood sugar. And as I previously noted, insulin’s wholesale price tripled from 2007 to 2017, and remains unaffordable for millions.
This is why assistance for individuals struggling to afford insulin was at the center of Democratic efforts to lower drug prices. The House passed both the Build Back Better package with the insulin provisions, and a separate standalone bill with the cap on the monthly co-pay. The Senate bill by Sens. Collins and Shaheen includes the co-pay cap, and limits the rebates that pharmacy benefit managers collect on insulin instead of delivering the cost savings to patients.
The existence of a bipartisan bill on insulin appealed to Sen. Joe Manchin (D-VA), one of the only Democratic holdouts and a big reason behind Build Back Better’s gutting. Manchin insisted on taking the insulin provisions out of reconciliation and letting the Collins-Shaheen bill play out, and in an attempt to tout bipartisanship.
Manchin is known for his novel adherence to the bipartisan strategy, at a time when many have long accepted its hopelessness. Senate Majority Leader Chuck Schumer (D-NY), who needs Manchin’s vote to pass anything along party lines, agreed to take the language about insulin out of the remains of Build Back Better.
To pass outside of reconciliation, the INSULIN Act would need 60 votes, which (assuming all Democrats were in favor) would necessarily include 10 GOP votes. But that possibility is only being entertained to appease Manchin. “I have tried to count to 10 many times on this and so have others,” Alex Lawson, executive director of Social Security Works, said. “Democrats are willing to water down a bill. But [Republicans] don’t have 10 votes.”
The Collins-Shaheen bill also has substantial flaws. It would lower costs for those with insurance by capping co-payments, which does not affect the list price of insulin. The list pricing is ripe with price gouging, making it especially unaffordable for those without insurance, who have higher hurdles to access. “Insulin prices are killing people, the solution has to be to lower the prices for the people that it’s killing,” Lawson said.
The House version of drug price reform addressed this by making insulin eligible for Medicare price negotiation. But because Manchin wanted to give bipartisanship a chance, that was taken out of the Senate version.
Now, the window to remedy this oversight is rapidly approaching—and the health of millions of people who are already rationing the drug hangs in the balance. Roughly 268,000 West Virginians live with diabetes, according to a letter to Manchin from more than a dozen organizations in January.
Public Citizen led a letter from hundreds of people and more than two dozen organizations emphasizing the importance of passing a bill with drug price negotiation specific to insulin, urging Schumer to “ensure people who need insulin to live are not left behind.”
“It would be an enormous mistake to exclude insulin price negotiation and out-of-pocket protections that previously received overwhelming support and miss this key opportunity,” the letter states.
There are a few ways to ensure that insulin gets included in something that will be passed. Democratic senators seem to at least be aware that, in the event that they can push a vote through on the Collins-Shaheen bill—only for it to fail—maybe Manchin will see the fault in the bipartisan strategy, for just this one, crucially important, moment.
“Removing insulin from the reconciliation bill’s drug pricing reforms is a harmful and pointless mistake,” McConnell told me.
But the Senate’s rules may even get in the way of that happening. On Thursday, there will be a Senate parliamentarian debate on Build Back Better’s current provisions to allow Medicare to negotiate drug prices, debates that will keep happening for the next couple weeks. Assuming that Schumer can schedule a vote to the floor on the INSULIN Act, it failing within the month would give Manchin the proof he needs to put insulin back on the table within budget reconciliation.
However, while opening up insulin to Medicare price negotiation would seem to fall within the complex budget rules governing reconciliation, a co-pay cap for Americans in private insurance might not make the cut. They might be able to get a co-pay cap for federal programs like Medicare, Medicaid, and Tricare.
All of this will require some nimble legislative maneuvering. If insulin does not get included in Build Back Better, there is a chance that the drug price reform may have residually positive effects for insulin users. But, as Matt McConnell, a researcher with Human Rights Watch, noted to me, the market price for analog insulin has already skyrocketed, leaving that provision only applicable to new forms of insulin that may hit the market.
There are many roads to the same result—a massively popular result. Millions of people could benefit from comprehensive legislation that addresses the rampant price gouging that happens around insulin. However the journey, the need to relieve price burdens on insulin users is urgent.
“Removing insulin from the reconciliation bill’s drug pricing reforms is a harmful and pointless mistake,” McConnell told me over email. “Majority Leader Schumer needs to change course now and reinsert insulin into the bill before Democrats fumble this life-changing opportunity for no reason.”
