2018 was a groundbreaking year for the Type 1 Diabetes Defense Foundation. As January draws to a close, we’d like to thank our community of supporters—and talk about all that you helped T1DF accomplish last year.
With another activist group newly captured by billionaire-funded Arnold Ventures (a donor-advised fund associated with a foundation and a PAC, interested in drug manufacturing and other healthcare corporate and commercial ventures), T1DF is now the only nonprofit voice in the U.S. insulin pricing conversation that has not been coopted by corporate interests.
In federal court
In the two years since the start of litigation on the U.S. insulin price and access crisis, T1DF remains the only diabetes organization—and the only disability rights advocate—to intervene directly in a case that will determine whether some Americans with diabetes will live or die.
T1DF entered the fray in March 2017 to counter an apparent attempt to compromise patients’ right to sue insurance companies for their role in inflating insulin prices. T1DF’s March 2017 lawsuit Boss v. CVS Health (which addressed PBMs’ role as agents of the insurers who control what most Americans pay at the pharmacy) was also the only patient plaintiff insulin complaint to seek disclosure of net prices. In the consolidated insulin pricing case In re Insulin Pricing Litigation, T1DF fought throughout 2018 to protect patient plaintiffs’ right to make claims against insurers and employer plans that misrepresent the cost of insulin and create benefit designs that discriminate against people with diabetes.
Early in 2018, T1DF challenged the consolidation of Boss v. CVS Health into In re Insulin Pricing Litigation, whose lead attorneys intend to sue manufacturers only—and to delay indefinitely patients’ claims against insurers and their PBM agents.
On November 6, 2018, after a brutal procedural fight, T1DF won its effort to unconsolidate the Boss insulin case and and then dismissed it—without prejudice—in order to protect patients’ claims against PBMs acting as agents of health insurers and employer plans.
Throughout 2018, T1DF sounded the alarm on a Tolling Agreement signed by attorneys in the insulin action and brought to public attention plaintiffs’ attorneys’ apparent conflict due to past and present work for insurers and other payers.
T1DF's involvement in this complex class action litigation and our interviews over two years with numerous class action law firms have led us to realize that patients who need insulin face a significant hurdle as potential class action litigants: most class action firms with health care experience also defend or advise health insurers or other payers. Those past and present insurer clients have further used media capture and “consumer” litigation via Community Catalyst’s PAL project to shape present litigation by shaping attorneys’ understanding of the mechanisms that drive drug pricing.
This decade-long legacy of pro-insurer “litigation capture” is yet another challenge we must now overcome.
In 2019 and beyond, T1DF will work to identify and educate the next generation of class action plaintiffs’ attorneys in the many areas where insurers’ actions are now adverse to the interests of patients with chronic medical conditions, including discriminatory benefit design, rebate capture, exclusionary formularies, copay coupon capture (“accumulators”), and accounting manipulations that inflate premiums.
In the news
In the Harvard Political Review, T1DF helped explain How Insulin Became Unaffordable.
In Eugene’s Register-Guard, T1DF president Julia Boss asked why Oregon’s drug pricing Transparency Bill Ignores Role of Insurers. Why didn't HB 4005 demand net cost disclosure from the insurers who decide what most patients pay at the pharmacy counter?
The American Journal of Managed Care reported in March that Out of Pocket Costs for Insulin are a Problem. Litigants in Case Disagree on Who is at Fault.
In May, the American Diabetes Association’s Insulin Access Working Group cited Boss v. CVS Health to illustrate the “growing gap between the list price and net price.”
The Portland Business Journal reported when T1DF Lambasted the Oregon Prescription Drug Program, asking why the Oregon Health Authority and discount card administrator Moda Health have failed, for 11 years, to fulfill OPDP’s mandate to deliver rebated net prices to individual cardholders.
On World Diabetes Day, Willamette Week profiled T1DF’s work in Oregonians Pay Way More Than They Should For Insulin. Prizewinning journalist Nigel Jaquiss reported on the human suffering that insurer rebate capture is causing in Oregon, and on the investigation Oregon’s insurance commissioner launched at the urging of T1DF’s director of policy and advocacy, Charles Fournier: “A recent email exchange between Fournier and Oregon Insurance Commissioner Andrew Stolfi captured the intensity of the issue. When Fournier criticized Stolfi's agency, which sets health insurance rates, Stolfi complained about his tone. ‘My tone is not the issue that should be concerning you,’ Fournier replied to Stolfi in an Oct. 19 email. ‘People are dying and going bankrupt—or incurring life-threatening medical complications as they ration insulin.’”
T1DF was also mentioned or quoted in The New York Times, StatNews, BioPharmaDive, Bloomberg Law, and more.
In Washington, DC
Throughout 2018 T1DF educated federal legislators and regulators on the rebate capture crisis now taking place in health plans that cover over half of Americans, including the public-private partnerships of the ACA, Medicare Part D, and the Federal Employees Health Benefit Program.
T1DF closed out December 2017 with a white paper on the misrepresentation of plan cost to patients and insurers’ rebate pumping and rebate capture that together have driven up list prices.
In January 2018, we reminded CMS that Medicare Part D was created to give individual beneficiaries “access to negotiated [net] price.” T1DF recommended that Medicare Part D regulations be revised to require 100% rebate pass-through to individuals at the point of sale.
In December 2018 and January 2019, T1DF met with healthcare advisors for Sen. Cassidy, Sen. Shaheen (Senate Diabetes Caucus), Sen. Collins (Senate Diabetes Caucus and Special Committee on Aging), Rep. Merkley, Rep. DeGette (House Diabetes Caucus) and Rep. DeFazio. We also met with professional staff of the Special Committee on Aging, providing information related to their ongoing investigation of insurers' role in inflating the prices Americans now pay for insulin.
T1DF further educated federal actors on the role played by the Federal Employees Health Benefit Program in driving up the price of insulin, as well as the ongoing capture of rebates in FEHBP managed by the U.S. Office of Personnel Management with the assistance of the Office of the Inspector General.
In the world
In many countries around the globe, the absence of reliable power supply and cold chain logistics combine to make type 1 diabetes a death sentence within the first years of diagnosis. Massive investment in top-down logistics, driven by global campaigns to deliver vaccines and HIV medications to medical institutions, has yet to solve the “last mile” distribution challenge that’s essential in treating a chronic medical condition with temperature-sensitive insulin.
In November and December 2018, T1DF began to build relationships with leading nonprofits in the field of pharmaceutical supply chain and cold-chain distribution systems, discussing ways to move forward patient-focused solutions in sub-Saharan Africa for “last mile” insulin access.
In 2019 we’ll be . . .
Telling it like it is: informing legislators, journalists, and political candidates about an insulin pricing crisis that is first and foremost an insurer-controlled benefit design crisis. Longterm impact litigation campaigns achieve greatest success where there is broad public understanding and support.
Expanding our board of directors and building strong relationships with advisors.
Collaborating with scholars who bring expertise on patents, financial transactions in the drug supply channel, and contracting in private-public partnerships that shape the health insurance ecosystem.
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Become a sustaining monthly donor. Over 7 million Americans use insulin. Just 1,000 $10 monthly donors can sustain T1DF as the only U.S. nonprofit that's dedicated solely to defending equal rights and opportunities for people who need insulin.
Reversing diabetes discrimination begins with you.
Oregon-based 501(c)(3) nonprofit Type 1 Diabetes Defense Foundation is America's only legal advocacy organization dedicated to advancing equal rights and opportunities for Americans with type 1 and other forms of insulin dependent diabetes. T1DF accepts no funding from the pharmaceutical, medical device, pharmacy benefit management, or insurance industries, nor from any organization they fund or any investment fund or any other corporate actor with interest in healthcare. We support regulatory frameworks in which manufacturers compete directly on innovation and price to consumers and where drug channel actors can engage in open and efficient price arbitraging, without price discrimination and asymmetries of information. Annual report available here.