You might say the advocacy and action aimed at Insulin Affordability is catching on like wildfire, as more grassroots efforts spring up across the USA.

Just take a look at some of these most recent examples:

  • A state lawmaker in Oregon who's been living with type 1 diabetes for nearly a half-century, and also has a daughter nearing her 20-year mark with T1D, was a key voice behind state legislation calling for transparency in insulin pricing. His once-upon-a-time experience driving to Canada for less-expensive insulin played a part in his action on this newly passed Oregon law.
  • Across the country in New York, a D-Dad with two T1D kids is raising his voice on insulin pricing and using that as part of his platform in running for a Congressional seat in the upcoming 2018 midterm election.
  • In Boston, a non-profit organization aimed at "Right Care" in healthcare has taken up #insulin4all as its rally cry for 2018, coordinating protests on the streets and letter-writing campaigns to media organizations and legislators nationwide. The group has chapters in over 15 states already, bringing our D-Community into the fold to echo their #insulin4all calls.
  • In our nation's heartland, a Colorado lawmaker who lost a younger brother from a low blood sugar is spearheading his own state's insulin pricing transparency legislation -- while a group of D-advocates in Indiana, Kentucky and Ohio are organizing their own advocacy on the same issue.

Not to mention all the other protests -- from the ongoing class action federal court litigation to promotion of awareness petitions and proposed systematic reforms, to efforts targeting employers and the Pharmacy Benefit Managers (PBM) middle-men who have complicated drug pricing with their rebate practices.

Yep, Insulin Affordability and Access is hitting a fever pitch!

To keep you all fully informed, we're digging into each of these efforts with a detailed explanation below. Grab some coffee or a snack, as it's a lot to read but riveting stories that all tie together around outrageous insulin-pricing and how to make it stop.

 

Oregon's Drug Pricing Transparency Law

Long before he became an Oregon state senator a couple of years ago, Dennis Linthicum recalls once being faced himself with the personal crisis of not being able to easily afford the life-sustaining insulin his family needed.

Oregon Sen. Dennis Linthicum and his daughter, Dani Nichols

Diagnosed in his late teens during college about 45 years ago, Linthicum lived through the beef and pork insulin days with a "tinkle strip" for urine glucose testing, before transitioning to the first synthetic-human insulins in the '80s and eventually transitioning to the faster-acting analogue insulins of the late 90s. His daughter Dani is also T1, diagnosed at age 15 almost two decades ago.

Living in southern Oregon, their family found a practical solution: Spend half a day driving to Canada, to purchase insulin at a lower price-point -- $30 instead of the $150 a vial cost at the time. Back then in the early 2000s, Linthicum even recalls you could get mail-order pharmacies to ship insulin into the States; that practice was barred by Congress in the 2000s, just aout the time prices really began to skyrocket.

Linthicum notes that in his lifetime, he's seen insulin go up from $15-$18 originally to twice that amount, and then of course to the $300+ per vial it currently costs (!)

“Something is completely whacked-out here,” Linthicum says. "This crisis is what has me totally torqued up. None of this is natural or how it should be, and it's just terrible the public has no idea how this works and why these prices are as high as they are."

After being elected as a state senator in November 2016 as a Tea Party Republican, Linthicum has put his name into the fight for greater insulin pricing transparency.

While his state's efforts echo the sentiment behind the Nevada law passed last year to rein in insulin prices and more generally the #insulin4all grassroots movement, Linthicum says he opposed price-capping legislation last year that he felt went too far and in the wrong direction, putting an actual limit on medication prices. Now in 2018, he co-sponsored a more focused legislative measure that came from his House colleague, to provide transparency in how price are set.

Linthicum sees this as a government and corporate-driven problem, and coming from a free-market background, he doesn’t like the idea of “government hacks” solving the problem.

“Neither you nor I, frankly, know what it costs a good soul to engineer or manufacturer a vial of insulin, and so setting a cap on it doesn’t seem reasonable," he said. "We’d be no better off. Instead, we need a system where we can see the information for ourselves and judge accordingly.”

Passed into law earlier this year after signed by the Oregon governor, the Prescription Drug Transparency Act (or House Bill 4005) requires drugmakers to publicly report R&D and marketing costs, profits and other expenses for medications that get price hikes of more than 10%, according to the Oregonians for Affordable Drug Prices group. It takes effect starting in January, but won't be fully implemented with enforcement until July 2019 when Pharma must submit their first transparency reports.

While the Oregon transparency law focuses on Pharma specifically, the enacted statute does include a provision for a special 18-member task force that will delve into the bigger systematic problem. That means examining the practices of other players including Pharmacy Benefit Managers (PBMs), wholesalers, pharmacies, and insurance companies. Linthicum tells us there will be scrutiny of profit margins and PBM "rebates," as it relates to the manufacturing and distribution costs of goods sold.

Linthicum will be a member of that task force being assembled now, while the House and Senate leaders along with the governor will be appointing other members from the Pharma, PBM, and patient sides plus others from the state health and commerce boards. A comprehensive report will eventually be compiled for review and recommendations, to map out a strategy on transparecy across the drug supply chain.

"The public needs to know how their money and premium dollars are being used in this Rube Goldberg machine of absurd charges here and there, just padded onto each other," Linthicum says. "I just find myself flabbergasted. Everybody's making a buck on this, and the patient is left twisting out in the wind and getting colder as the days go on."

As of now, Pharma hasn't filed any litigation on this enacted state law as it has in Nevada. That case remains pending. It is of course possible that the new Oregon law will land in court as well. And clearly, these efforts will influence what happens in other states on the legislation and litigation fronts.

 

#Insulin4all in New York Congressional Run

D-Dad Jonathan Lewis is a Democratic candidate seeking a Congressional seat for District 16 in New York (northern Bronx, and southern half of Westchester County with suburban cities of Mount Vernon, Rye, and Yonkers).

Both of his children have type 1 -- his daughter diagnosed at age 6 and son as a teenager -- and he's a former head of the JDRF chapter locally. He made a video in March in front of Lilly's NY-based research center, using the #insulin4all cause as one of his key campaign platforms and noting that he stands with the American Diabetes Association in its call for Congressional hearings on insulin affordability.

NY Candidate Jonathan Lewis

"I know first-hand how expensive insulin and other medical equipment is, despite being necessities," Lewis says. "I'm fortunate enough to be able to pay for insulin, but I hear of others having to choose between food and insulin and I think it's a complete outrage. We all need to stand together for this cause."

He's published a policy memo calling for more Congressional hearings on drug prices, as well as enouraging safe international importation of medications like insulin. In vowing not to accept lobbying money and corporate donations, Lewis also called out Eli Lilly and the other insulin manufacturers to "roll back prices on insulin because insulin is not affordable for the typical American family."

Lewis is also taking a jab at his opponent, Rep. Eliot Engel, who already sits on the Diabetes Caucus in Congress, about not takig more action. He specifically calls out the sitting lawmaker for taking money from Pharma's political action committees. "How can we trust our representative to fight for us when he's in the pocket of those doing us harm?" Lewis asks rhetorically in his campaign materials.

This comes as drug pricing overall is a huge issue in politics for Congress, with a recent report showing drug prices rise at 10 times the rate of inflation, and a Kaiser Family Foundation poll showing that 52% of Americans believe lower drug prices should be the top Congressional priority. Even some lawmakers on the Congressional Diabetes Caucus are grilling Big Pharma specifically for its role in the prices of insulin, making it all the more real for PWDs.

However one feels about politics, clearly Insulin Affordability is showing up as a hot button in this upcoming mid-term election season -- and our D-Community is right there in the middle of it!

 

Right Care Alliance in Boston, and Beyond

Say hello to the Right Care Alliance (RCA), which describes itself as "an activist organization working for radical, systemic change in healthcare." Their rally cry: "We believe the current system is failing and are fighting to put patients, not profits, at the heart of healthcare."

Based in Boston, the org has chapters in 15 cities across the USA with memberships made up of clinicians and advocates from across patient communities. While the RCA notes it has been around for a few years, its 2018 focus on drug pricing and #insulin4all specifically marks a sort of "coming-out for us."

"We launched a campaign to fight out-of-control drug prices this year, and although there are many drugs that fall into the price-gouging category, we felt strongly that insulin was the place to start," says RCA leader Aaron Toleos (who does not have a personal D-connection).

"There are many reasons (to focus on diabetes): the large number of Americans affected; the fact that insulin therapy has been available for almost a century and its discoverers intended for it to be affordable and accessible to all; the fact that there is so much at stake for those with T1 when there are barriers to insulin access; and, of course, the tragic stories we have heard of those who have died while rationing. There were also members of the RCA who have T1 who were key movers here."

To date, the group has hosted several events. In February, they held a Facebook-streamed event at their Boston HQ with a panel of patients and doctors discussing the issue of insulin pricing. The group also held an op-ed write-a-thon in late March that involved 20 members in more than a dozen cities writing letters to local media. And on March 26 the group held an #insulin4all tweetchat to discuss the topic. They've also organized a solidarity march in Boston, that brought about 50 people out in front of Joslin Diabetes Clinic, and another is scheduled for this weekend on April 8 in Washington D.C. They also have a "National Day of Action slated for May 12, though details are still TBD on what that's all about.

One D-Community member involved is Carol Ezell, who's lived with T1D for 25 years and recently joined the RCA from the Dallas-Fort Worth area in Texas.

Carol says she and her husband attempted to semi-retire a few years ago, deciding to start their own small accounting business to fund health insurance premiums. She's a Certified Public Accountant and had built up a client base, which allowed her a flexible work-life balance.

Texas diabetes advocate Carol Ezell

Then everything changed in Summer 2017, when Congress introduced bills that worried Carol about being able to buy insurance in the Affordable Care Act's individual market going forward. Seeing no action on the underlying drug pricing and healthcare cost issue, Carol recalls feeling sick to her stomach.

That also coincided with her first-ever diabetes complication -- diabetic macular edema -- and she was anxious about the $3,000 per injection cost to treat that retinopathy. She and her husband closed their small business as a result, and Carol went to work full-time for one of her accounting clients, in order to have full insurance benefits. She flat-out believed her vision was at stake.

"I liken it to being dropped in the middle of the ocean to tread water, but not able to swim towards any shore or goal," she told the 'Mine. "I am fortunate to have options that many people do not, and have to put myself in the place of people who are literally not able to afford their medications or treatments. Still, I feel overwhelming sadness and anger that this is happening."

Using pay-it-forward sites where she sees people scrambling to get insulin and diabetes supplies to live, and seeing lack of action on the national scale, Carol was happy to discover the RCA online and soon signed up with a local chapter.

"I used to be a person who would stay silent when the conversation turned to politics, but now I realize that it is not politics -- it is life and death for many," she says. "I want to be able to join with others who are working toward positive change."

 

Transparency Legislation in Colorado

We shared the story of Rep. Dylan Roberts in Colorado at the start of the year, how he was recently elected and took on insulin pricing transparency as his first major legislative move. His motivation stems from the death in 2016 of his younger brother Murphy, who lived with T1D and died after having a low blood sugar that led to a head injury.

Colorado Rep. Dylan Roberts

His HB-1009 legislation introduced in January made it through the House Health Committee on March 23 by a single vote, and now goes to an appropriations committee for action and then (hopefully) the full House and eventually the Senate for action.

Longtime T1D activist Betsy Ray was one of the advocates attending that hearing, and she shared that the committee chambers "were overflowing into other rooms" as those with a vested interest in the legislation awaited their chance to speak or hear the final vote.

From what Betsy shares, HB 1009 was originally seen as "too encompassing and would cost a fortune to regulate from a governmental spending perspective. It was also stated by industry representatives that it would disclose proprietary information, so it was rewritten to make insulin the only drug listed in the Act and for disclosure of insulin pricing only; excluding other information considered to be industry-privileged."

As of now, HB-1009 hasn't been slated for the next hearing but we're keeping in touch with Rep. Roberts for updates on the next steps.

"Most importantly he is listening to his constituency," Betsy says about Rep. Roberts. "I am proud to have him as the representative for my district."

 

Midwest Grassroots Advocacy

On March 25, a small group gathered from multiple cities in the Ohio River trio of states -- Indiana, Ohio, and Kentucky -- to talk about efforts already underway and what's next. Fellow type 1 and D-advocate Angela Lautner organized the meetup, with the help of UK-based T1International that's been working to help connect dots for grassroots #insulin4all advocates across the States.

There was one of these meetups in New York earlier in the year, following the insulin pricing protest in front of Eli Lilly's HQ in Indianapolis during September 2017. This Cincinnati gathering was the latest in a string of others already in the works.

"A consistent fear expressed by every person in the room was that of either losing health insurance coverage or being forced onto a high-deductible plan, where paying the list prices of insulin becomes the only option for staying alive," Lautner shared in a T1International blog recap. "It was clear that most people in the group were very passionate in their belief that legislation would be the best way to create change, so we decided that our main goal would be around pushing forward insulin pricing legislation in the Kentucky-Ohio-Indiana area."

Campaigns will be directed at state legislators, Lautner wrote. That might take the form of local letters and/or petitions, possibly a plan to ultimately present these and personal stories to legislators, planning a “day of action” at heavily-trafficked areas and venues, attending health advocacy events at the state capitols, and seeking commitment from candidates and incubant legislators to address insulin pricing in the 2019 legislative sessions.

"While we understand that we likely face a long road ahead, full of unknown challenges from many sides, we refuse to sit and do nothing," Lautner wrote. "People are dying because of the price of insulin. Not one more life should be lost because they could not afford the very thing they need to stay alive. That is why we will continue our local action planning and advocacy until we see change."

They're referring to this effort as @KOIinsulin4all -- named with letters from the three respective states. The group can be reach via Twitter or email at KOI.insulin4all@gmail.com for updates on campaigns and advocacy in that region.

 

Clearly, these are just the latest in a line of efforts, big and small. No doubt more will follow.

As more states embrace these transparency measures, it's notable that some are wondering where the ADA and JDRF - the two largest diabetes orgs -- come into the picture. We'll be watching for their presence on these measures, as more states propose them, and we're told that JDRF is specifically examining the best ways for it to get involved in these state-specific issues given each one can vary so much. 

While D-peep Sen. Linthicum in Oregon does raise concerns about both legislative over-reach as well as grassroots, populist "mob rule," he's pleased to see so many in the D-Community stepping up to raise their voices on this insulin and drug pricing issue.

Cheers to that! We look forward to reporting on more as we learn about it.

 

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