Advocacy efforts continue for insulin cost relief in private insurance market.
By Mila Becker, JD, Chief Policy Officer, Government & Public Affairs
Insulin affordability has been a problem for a long time. Between 2002-2012, the price of insulin nearly tripled for no explicable reason. In the mid-2010s, we started hearing stories from members about how patients were struggling with the high costs, to the point where some patients had to resort to rationing dosages.
The situation was bad and getting worse. But today we are delighted to note the affordability issue is about to get better.
Thanks to last week’s passage of the Inflation Reduction Act of 2022, we’re entering an era where millions of individuals with diabetes no longer will have to make hard choices about how to pay for this life-saving therapy.
Under the legislation, which is headed to President Biden’s desk for his signature, people with Medicare who have diabetes will pay no more than $35 per month for insulin. This is HUGE! In fact, it’s the biggest change to Medicare in over a decade. This cap will provide particular relief to people on fixed incomes, especially as inflation keeps rising.
While this legislation only affects Medicare, we will continue to work with Congress to pass legislation expanding the cap to the private insurance market, so that all people who rely on insulin have access to affordable medication.
Sausage Making
Passing major health care legislation is never easy, especially in this era of deep partisanship. That’s why we’re so proud of our role in helping to bring about this insulin affordability provision.
Here’s a taste of what went on behind the scenes.
As mentioned, our members started raising insulin affordability red flags in the mid-2010s. Our attention to the issue started in earnest in 2017 when we initiated a series of focus groups and listening sessions with our members. With information gleaned from these events, we testified at the first Senate hearing on insulin in 2018. We testified again at a House hearing on insulin costs in 2019 and submitted written testimony when the House and Senate revisited the issue in 2021.
Our stance on the issue was further defined in 2019 when the Society published a position statement on increasing insulin affordability. Here we outlined a series of policies to lower prices and patient costs.
During this time, we also worked closely with the bipartisan Congressional Diabetes Caucus to find consensus on developing legislation. Our efforts gathered momentum in 2021 when we met with officials in Vice President Kamala Harris’ office along with the Assistant Secretary of Health.
Our message to the Biden Administration was simple: prioritize this issue. To our delight, the administration did just that!
We were thrilled to see President Biden single out insulin affordability in his 2021 State of the Union Address and call on Congress to move forward with affordability legislation. We were doubly thrilled that his speech included specific provisions outlined in our policy statement.
The legislative process took a big step forward when the House of Representatives included insulin affordability in its 2021 budget reconciliation package. But it took a step back when the Senate couldn’t muster the votes needed to pass its own reconciliation bill. This put us back to square one advocating to the Senate about the urgency of this issue.
Never giving up on passing a Senate reconciliation package, we began working with a bipartisan group of Senators in 2022 on legislation known as the INSULIN Act. This bill would lower prices and costs of insulin for individuals in both public and private insurance programs.
In support of this bill, we conducted a Diabetes Hill Day, where our members met with key legislators to explain the importance of the issue. We also organized multiple grassroots advocacy campaigns and congressional briefings to urge its passage.
In fact, over the months and years, we have arranged countless meetings between our members and congressional and administration offices to explain the problem and propose solutions. This is a nonpartisan issue. Our members reached out to lawmakers from all political perspectives, from progressive icon Sen. Bernie Sanders (I-Vt.) to rising GOP star Sen. Josh Hawley (R-Mo.).
Society staff also has worked constantly on this issue. Our efforts included making telephone calls with Senate staff seven days a week at all hours to share information, compiling stories from patients across the country about the lack of affordable insulin, issuing press statements to alert the media on the latest developments and the Society’s position, launching social media campaigns, and writing letters to each Senator about the problem of insulin affordability and the need for immediate action.
My favorite exchange occurred on a Saturday at the grocery store when I was sharing talking points with a Senate staffer in the ice cream aisle.
The INSULIN Act hasn’t passed—yet—but we’ve managed to convince many Senators across the aisle to support this legislation.
Savoring a Win and Looking Ahead
This brings us up to current events. As noted, the Inflation Reduction Act contains a $35 per month cap on insulin out-of-pocket costs for Medicare recipients. While we were happy with that measure, we want individuals in the private insurance market to enjoy the same benefits.
We believe we’re very close to achieving this.
The Inflation Reduction Act, in fact, had originally included a provision to institute the cap in the private insurance market. The Senate parliamentarian, however, ruled that provision was in violation of the budget rules. As a result, during the Senate’s Aug. 8-9 amendment vote-a-rama on the reconciliation bill, Democrats called to waive budget rules on this specific provision, a vote that required 60 ayes to pass. It fell short by only three votes.
While disappointed, we are heartened that Senate Majority Leader Chuck Schumer (D-N.Y.) announced he would call for a separate vote on the issue in September.
Only three votes short! And since the Aug. 9 vote, another GOP senator has announced his support! Momentum is on our side. We now count eight Republicans who are supportive — we need 10.
What Still Needs to Be Done
We will work tirelessly to urge Senate passage of the bipartisan INSULIN Act, or at least crucial provisions that can get 60 votes to pass. We would then need the House to pass the Senate measure. On a separate track, we also will work with the Centers for Medicare and Medicaid Services and the Department of Health & Human Services on rulemaking around the $35 per-month Medicare provision.
It’s always good to savor a win. But we never rest on our laurels. We won’t stop advocating until all people with diabetes can afford their insulin treatments.