The Shot - 10/9/20
Nick Jonas says don't ration. But is his new tool any help?
Welcome to the Shot Issue #2, written by Emily Pisacreta, a 5’7” pancreas. Have feedback? Got a tip? Email theshotnewsletter@gmail.com.
Nick Jonas Would Like You to Get Insulin, Please
Jonas and Beyond Type 1 say rationing is dangerous. But is their new tool, GetInsulin.Org, any help?
For years, #Insulin4All advocates have been begging one of the world’s most famous type 1 diabetics, Nick Jonas, to use his platform to talk about insulin rationing. This week, it finally happened.
“Together, we must get the word out: rationing insulin is never safe,” he posted.
But in an unsurprising move for someone who’s worked as an “ambassador” for both the pharmaceutical and health insurance industries (for Bayer and Cigna, respectively), the statement came alongside the announcement of a new, pharma-funded program from Beyond Type 1, the diabetes organization he helped found, that advocates are (at best) underwhelmed by.
The tool, GetInsulin.org, is aimed at connecting people struggling to afford their insulin with patient assistance programs. The site was made in partnership with several other non-profits, including the major players in the diabetes space, JDRF and the American Diabetes Association (ADA), as well as influential non-profits working on issues outside of diabetes, like the NAACP, the National Hispanic Medical Association, and Feeding America. But even with all that institutional support, the tool was ultimately paid for by the big three insulin manufacturers (Eli Lilly, Novo Nordisk, and Sanofi) plus Mylan, a newer seat at the big insulin profits table.
Naturally, the #Insulin4All community, which has long been critical of JDRF, ADA, and more recently Beyond Type 1, for accepting funding from pharma, was not inclined to applaud the effort.
As a user of GetInsulin.org, you put in basic info like zip code, income, insurance status, and what types of insulin you use, and the tool is meant to give you a list of options for getting insulin. In most cases in which a person is likely to need help affording insulin — like not having insurance or having a high deductible health plan, the options are limited to patient assistance programs offered by Lilly, Novo, and Sanofi. Many advocates have complained that these assistance programs are too time consuming, too restrictive, and too temporary. (Check out this comic from Miss_Diabetes.)
Other advocates pointed out that the tool essentially duplicates other tools that already exist online and are heavily promoted, like the ADA’s InsulinHelp.org. Some others object to what might best be described as illegibility — scary red and yellow fonts and results pages with no fewer than a dozen bullet points to parse through — hardly what you want to look at when you have fewer than seven days of your life saving medication left. (Ironically, if you enter a zip code based in Minnesota into the tool, you’ll be offered help through a state-run insulin assistance program that the very funders of the tool are suing the state to end.) But such is the status of official lines of help for people facing insulin deprivation.
What remains to be seen for this tool is if, by virtue of the partnerships with orgs like the NAACP and the popularity of a figure like Jonas, it reaches audiences that aren’t yet connected to these resources. So far, very little media has picked up the story, and Jonas himself is onto promoting other things… like his tequila brand.
RAND: Insulin 5-10x More Expensive in the U.S. than Elsewhere
The RAND Corporation released a study comparing average insulin costs in the U.S. to those in other wealthy countries, confirming what is already obvious to subscribers: insulin is way more expensive in the U.S. than any place like it.
RAND compared manufacturer prices in the U.S. to 32 other countries in the Organisation for Economic Co-operation and Development (OECD) and found that they’re 5-10 times higher here than anywhere else. The OECD country with the next highest average cost per unit of insulin was Chile, and the U.S. cost was still 4.5 times higher than that. The study looked at both analog insulins (Humalog, etc) and human insulins (like “Walmart insulin”) and found higher prices in both categories.
What’s also interesting is what RAND says its analysis suggests about net prices— the price for insulins paid by insurance after rebates. Health economics wonks have sternly rebuked advocates for talking about list prices alone, suggesting that pharmacy benefit managers and insurance companies should be the focus of ire for not passing savings from rebates onto consumers. But the authors here note that insulin would still be at least 4 times higher than other countries were rebates taken into account. (Besides, a good portion of people decrying the cost of insulin wouldn’t be mad if the U.S. were to say, abolish private health insurance altogether in favor of a single government payer that has the power to negotiate with pharmaceutical firms, but let’s not break any more wonk hearts today.)
Axios: Americans pay much more for insulin
Other news in small doses
Kaiser Health News: As Trump Touts His ‘Great’ COVID Drugs, the Pharma Cash Flows to Biden, Not Him “In a year when complaints about high prescription drug prices have been overshadowed by the pandemic, donors with ties to pharma manufacturers have given around $976,000 to Biden, according to data from the Center for Responsive Politics.”
U.S. News: Has the Pandemic Changed Type 1 Diabetes Care For Good? Will telemed appointments for diabetes care become standard even in a post-COVID world? Not having to physically visit the doctor for prescription renewals could remove one barrier to access for some people with diabetes.
STAT: Why people with diabetes are being hit so hard by COVID-19 People with diabetes remain among the most at-risks groups for complications of COVID-19. (So does anyone aged 74, apropos of absolutely nothing.)
American Journal of Managed Care: Study Highlights Persistent Racial Disparities in Insulin Pump Use Among Children With T1D A study in the Journal of Pediatric Nursing suggests that white children are 2.5 times more likely to be prescribed an insulin pump than Black children, adjusted for income.
MedPage Today: Can States Regulate PBMs? Supreme Court to Decide PBMs (pharmacy benefit managers) are in court fighting to fend off state regulations. PBMs are pharmaceutical supply chain middlemen that are frequently cast as the real villains in the story of insulin prices (mostly by PhRMA). The Supreme Court heard oral arguments on Tuesday in Rutledge v. Pharmaceutical Care Management Association, the PBM lobby. At issue are PBMs’ dealings with small, independent pharmacies, and whether Arkansas is allowed to interfere with how PBMs set their reimbursement rates.
Joe Biden endorsed Quinn Nystrom in Minnesota’s 8th district. Nystrom has type 1 diabetes and has been associated with #Insulin4All for some time.
Lastly, do not miss this Markian Hawryluk article from last week: Not Pandemic-Proof: Insulin Copay Caps Fall Short, Fueling Underground Exchanges.
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That’s all for today’s Shot. Happy Friday to all (except co-pays and deductibles).