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What if you developed a disease that required constant medication to sustain your life, but your insurance or lack thereof cut off your ability to get that medication?

It’s not a theoretical question for many people with diabetes (PWDs).

Things hit a fever pitch in 2012, when insulin prices began to skyrocket and higher deductibles began to appear on insurance plans. Also, sadly, a shocking number of PWDs in this country remain uninsured or underinsured, which literally puts their lives in danger.

How are PWDs coping with this crisis, and what is being done to help them?

Sa’Ra Skipper in Indiana had tried everything to afford the life sustaining insulin she needed as a person living with type 1 diabetes (T1D).

When a kind pediatric endocrinologist who’d been giving her sample vials had to stop, Skipper dropped out of college (and a program she was both passionate about intellectually and excited about financially) to go to work: just for the health insurance.

She worked at eating only foods that needed just a small amount of insulin to keep her blood sugar in check as a way to save her cash. Ironically, she had to turn to cheaper and less healthy food.

She eventually turned to rationing, the practice of figuring out the minimal amount of insulin you need to just stay alive that medical experts agree is life threatening.

“When you are rationing, every grain of thought you have and use is to make sure you are giving yourself just enough insulin to stay alive, and not a bit more,” Skipper said.

Sa’Ra Skipper

That lack of sufficient insulin nearly shut her down, leaving her exhausted, cranky, and often unable to focus. It’s perhaps the worst she’s felt in two full decades of living with T1D, she said.

Friends thought she was just tired, she said. Her mother, who lost a sister to T1D years prior, was shielded from the reality, since Skipper knew she did not have the financial means to help and would just worry more.

“I read about a person who died doing this, and I thought: This could be me,” she said.

Skipper, who’s become a vocal advocate, is far from alone in her struggles. Every day, young adults, senior citizens, and many in between reach out via social media admitting their crisis: they’ve used up their insulin and have no place else to turn.

Danielle Hutchinson in North Carolina was diagnosed with T1D 12 years ago, and as an adult, believed she’d made the right choices to protect her insulin supply.

She was careful when she turned 26 and went on her own insurance to choose the plan that was not the cheapest, but rather gave the best coverage.

Danielle Hutchinson

“I picked the ‘lower’ (and yes, I’m saying that in quotation marks) deductible and paid a higher premium,” she said, knowing she’d need that lower deductible with the cost of insulin and other supplies over a year’s time.

The monthly payment (which included no dental or vision) was a challenge, but she planned for it.

Then COVID-19 hit.

“I’m self-employed as a contractor, so I bring in different amounts each month,” she said. When her main client (90 percent of her workload) shut down because of the pandemic, she was able to still scrape by, but fell behind on paying her monthly insurance premium.

Despite calls and letters, she was told COVID-19 did not count as a forgivable reason to fall behind, and was removed from the plan.

That has put her $12,000 in debt, just from medical needs.

She admitted as much to her parents, with whom she now lives, saying, “It would be cheaper for everyone if I just got COVID-19 and died and you cremated me.”

From strong contract worker to thinking death would be “cheaper and easier on my family,” Hutchinson said, all because her medication was nearly unattainable.

Those are the stories, Skipper said, that push her to speak out and advocate for change. And there are plenty of them “right here in America,” she said.

“We should not have people rationing insulin, not eating or not paying bills just to stay alive. Do a simple Google search. We have a problem. And someone has to do something about it,” Skipper said.

The Affordable Care Act (ACA) passed in 2010, with the goal of making health insurance available to more people. That did help somewhat, but it couldn’t foresee what was coming for PWDs, according to George Huntley, leader of the Diabetes Patient Advocacy Coalition (DPAC) and the Diabetes Leadership Council, who also lives with T1D himself.

“Insulin (affordability) wasn’t the issue then. It was access to insurance,” he said.

When the ACA passed, PWDs could no longer be denied insurance for their preexisting condition — something that happened so often prior to that change that some adults with T1D never moved jobs out of fear of losing their coverage.

Now, young adults could stay on their parent’s insurance until they turned 26 even if they were no longer a full-time student. And the ACA mandated that new employees had to be accepted onto an employer’s plan within a month of hire; prior to that, it could be a 6-month wait, something that could cost a PWD thousands of dollars.

All that helped, but in 2012, two things changed for the worse, Huntley said.

First, insulin prices went “through the roof,” and continued to climb, attributed at least in part to the new power brokers in the prescription drug world: Pharmacy Benefit Managers (PBMs).

Second, higher deductibles began to appear on insurance plans, along with pharmacy costs being included in the deductible, something Huntley said was the result of employers and insurance companies trying to recoup losses from ACA changes. The one-two punch of those things began to creep to the surface.

By about 2018, stories were circulating all over of people rationing insulin and even dying from the effort. Caravans began heading to Canada to purchase insulin — with no prescription and at a fraction of the cost it had risen to in America.

Hearings were held. Executive orders were signed. But nothing stopped it. Organizations were formed to battle the issue, and at a state level, there have been some successes.

The uptick in both social media posts, traditional media stories, and groups pushing for legislation helped spread the word.

All that publicity, Huntley said, may be the best thing to happen yet.

“It really does help that more people are pissed off,” he said.

Understanding exactly where to direct your anger is the challenge. Is it the President? Congress? Drug companies? A combination of them all? And what can your average American insulin user do about it?

Christel Marchand Aprigliano, a well-known advocate who has lived with T1D herself for decades, points out that the issue isn’t new, it’s just magnified. She remembers how, as a young adult with no ACA to protect her, she had to turn to things like clinical trials and begging doctors for insulin samples to get by.

Marchand Aprigliano now serves as the first-ever Chief Advocacy Officer of the nonprofit Beyond Type 1 (BT1) and previously co-founded DPAC. She has over a decade of experience studying this issue and helping work on bills for passage and programs for those in need.

She says that, of course, as a society we need to change this. But perhaps more vital now is the need to continue to help those struggling in the immediate term.

That’s why she’s proud of BT1’s program designed as a one-stop shop for all things prescription drug and diabetes life-related, including links to programs to help with food insecurity, something often coupled with medication insecurity.

It’s not the solution, Marchand Aprigliano said, but the programs and suggestions offered there can help keep people stocked up on insulin and other medications (and food) until bigger efforts hopefully begin to solve the problem for good.

“The most important thing we can do right now is to put all the answers and possible solutions in one place,” she said. “This helps people navigate a system that is not always easy.”

She says that everyone who uses insulin should check out the website. “There are so many people who qualify for savings and other programs who just don’t know they do,” she said.

The way it works is that site visitors are asked a series of questions such as what type of insulin you prefer to use, where you live, what insurance you have (if any), and more.

The program does not collect or share personal data, and it does not require that you be a citizen of the United States to qualify; you need only be a resident.

From there you are directed to different options that fit your needs, like manufacturer discount programs, State Medicaid and/or Children’s Health Insurance (CHIP) programs, and others that may be able to help you. Even the decently insured, she said, can find savings via copay cards through the site.

“These are not permanent solutions. But they will help keep us all healthy until change comes,” she said.

Her team is in contact with the new administration (as they were with the prior one) on the issue, and are “working on legislation now” around it.

PBMs became part of the process when the number of drugs available skyrocketed. Insurance plans and providers found it challenging to go through the tens of thousands of claims around all the drugs, so PBMs stepped in as sort of liaisons between the insurers and the manufacturers.

Now, they play a big role in why patients often pay so much, because they negotiate rebates and kickbacks that result in higher prices being pushed to the consumer.

PBMs, Marchand Aprigliano said, are an example of the popular saying, “the road to hell is paved with great intentions.” Indeed, in August 2019, Forbes reported on how PBMs drive up cost and lower quality of healthcare in America.

Marchand Aprigliano does see hope for change, prompted by all the attention on the topic at the moment and passionate patient advocacy programs around it.

But it won’t be a quick fix, she added.

“It took a long time for us to get here, and it’s going to take a long time to unwind the threads.”

While some have criticized JDRF for not taking up the issue soon enough or with enough oomph, vice president of regulatory and health policy Campbell Hutton told DiabetesMine that the org fought hard to be sure the diabetes community was well represented and got what they needed from the Affordable Care Act.

They have also been focusing more on insulin and drug pricing, partly through their advocacy Alliance with BT1.

“Our most popular page in our (online) health insurance guide is the help with costs page,” she said.

Now, she hopes they can help fight for affordable drugs and insurance for all.

“It’s mind-boggling that this fight is needed,” she said. “It’s a no-brainer — and the numbers back it up — that managing diabetes costs less than treating complications.”

She said JDRF is “looking at all the options” and “soon will be able to share publicly” programs they’ve been discussing with the Biden administration.

“JDRF is not successful until people are doing well and have good outcomes,” she said. “So this is, as a priority of ours, extremely high.”

In the meantime, many organic efforts have popped up to help those in need. A large group of people with diabetes on social media have begun Venmo’ing cash to one another when someone finds themselves in a crisis situation.

For those whose insurance will only cover an insulin type that does not work best for them (called “non-medical switching,” another obstacle), some are quietly finding other patients with whom they can swap brands.

Marchand Aprigliano stresses that anyone who hears of someone in need should help steer them to official programs that can help — whether or not they are giving the person immediate financial assistance.

An inside tip? She shared that all manufacturers and now pharmacies too are set up to provide an emergency 30-day supply, but it must be a true emergency and you can only do it once, for the most part.

“If you can tweet, you can direct some to long-term access and support and then they won’t have to rely on the kindness of strangers,” she said.

So where are the struggling patients Skipper and Hutchinson in this challenge now?

Skipper does have insulin, thanks to that job she left school for. She’s between jobs again (COVID-19-related) but has a stockpile.

The irony, she said, is she finds herself wanting to share that stockpile with others in need, but she’s had to cut back on that.

She hopes to return to school this fall with a new focus: medicine and the law. And she speaks out as an advocate and is thrilled to see more and more doing that.

“We all have to help each other,” she said. “We just know politicians move too slow. We don’t want them to ask us to sit at the table. We want to build the table.”

Hutchinson had success finding programs to help, which means that now “it still sucks, but it sucks less.”

She suggests looking into the savings site Good Rx (“A godsend for me”) as well as researching all programs.

Still in debt for that $12,000, she knows her credit will suffer, but hopes her body never again need suffer a lack of insulin.

Her advice if you’re facing this?

“Take a deep breath. Crying and panicking do not help a thing,” she said.

“Look at those manufacturer programs, and not just for insulin,” she said, pointing out that people have other prescription needs as well that they can find savings for.

And most of all: Advocate.

“The whole healthcare system needs to change,” she said. “Hopefully, we can all make that happen over time.”

Here are links to some important resource sites that can help: