Allie is a healthcare and disability patient advocate working primarily on insulin accessibility in the United States and Medicare for All. Allie is a member of the leadership teams of grassroots patient advocacy group NY #insulin4all and Mutual Aid Diabetes.
"If I'm Out of Insulin, I'm Going to Die"
by Matt McConnell for Human Rights Watch
“We see people who pass away because they ration their insulin. We have cases where we see people who have an urgent need, and it was late, and they passed away.” — Allie Marotta
Diabetics turn to one another for help
by Libby Watson for Sick Note
"That's a very real part of mutual aid, but we also focus on the community care aspect as well. So we're not only crowdfunding, the time and commitment that we put into taking care of everybody who comes to us. That's a lot of our focus, as well. And people get discouraged when they're like, well, I don't have funds to donate. There's so many other ways that you can participate."
by Kathryn Yu
Allie's Story is a choose your own adventure style online RPG that follows the real life and choices of a young person living with diabets in America. This game forces the player to put themselves in the harrowed shoes of a diabetic and choose between paying rent and staying alive. This game is based on information provided by Allie Marotta sourced from her real life experience of rationing insulin when she aged off her insurance at 26. Allie's Story is free to play. Find out more and play for yourself at the link below.
Trump says he's made insulin 'so cheap it's like water.' That's not true.
by Allie Marotta, The Washington Post
"“Insulin, it’s going to — it was destroying families, destroying people,” Donald Trump said during Tuesday night’s debate, ostensibly in the service of demonstrating that he has a health plan. “I’m getting it for so cheap, it’s like water.”
Cue a mass shudder as Trump’s unintelligible words sent a chill down the spine of people with defunct pancreases across the country. Sure, insulin is like water, at least in the sense that humans would die without access to it. But last time I checked, no one is paying $300 for a case of Poland Spring as I do every month for my insulin — and nothing that Trump has done as president has brought the two closer. Of course, I suppose it's fair to say the man has a skewed vision of the world and the cost of goods. After all, the roughly $3,600 I paid for insulin in 2017 is almost five times what he reportedly forked over in federal income taxes that year. (For the record, I would have spent almost $50,000 on insulin alone without insurance.)
With the impending general election, the Trump administration has done everything to make it look like they care about the insulin crisis while still managing to do almost nothing to stop people who are dying here and now. As insulin accessibility non-profit T1International states, “We don’t need incremental bureaucratic steps as an election approaches - we need transformative change that will make our medicine more affordable now.” The insulin crisis in America is very real, and it is painful for insulin accessibility advocates to watch this administration propose empty solutions, making a mockery of the plight of Americans who use insulin. Trump tried to argue during the debate that his recent actions on healthcare aren’t “symbolic.” But for most of us, his handling of the insulin crisis is worse than symbolic. It’s meaningless."
US Sanctions cause acute insulin shortages in Iran
by Koroush Ziabari, Asia Times
"Allie Marotta, a healthcare and insulin accessibility advocate in Brooklyn, who is also a member of the leadership team of the New York #insulin4all campaign, told Asia Times that Iran’s insulin shortage conundrum is a human rights crisis.
“People with diabetes are being forced to use antiquated and dangerous insulin which jeopardizes their right to adequate healthcare,” she said.
“Sanctions are an abusive tactic and a human rights violation. We’re seeing this clearly between the lack of personal protective equipment and now the insulin shortage in Iran. Sanctions cause mass loss of innocent lives and there is no political belief that can justify that,” she added.
According to Marotta, the best course of action at this time is to draw media attention to the simmering crisis and generate publicity to prod the US government into revising its sanctions policy and induce the Iranian government into acting in a more agile manner.
“If we make enough noise, we do have a chance of pressuring large international charity organizations and the insulin manufacturers to step in, which would be the most realistic goal,” she said.
The Brooklyn-based activist is now lobbying aid organizations and pharmaceutical companies to carve out legal workarounds and get insulin to people in Iran who need it immediately."
US election 2020: Lives that could be reshaped by Supreme Court
by Ritu Prasad, BBC News
"Allie Marotta has heard the tales of people giving up their dreams in exchange for a job which provides health insurance. She says the Affordable Care Act (ACA) is why she's been able to still pursue hers.
Diagnosed with type 1 diabetes in 2006, Marotta describes it as a "fatal illness that's made chronic by the use of medication". Without access to insulin, death takes a matter of hours. Marotta also has celiac disease - a common autoimmune combination.
Marotta says she couldn't have entered the performing arts industry in New York City without the ACA's provision allowing children to stay on their parents' plans until age 26. After the pandemic hit, she's struggled with work, but is still able to access health coverage.
"In my community, no one has health benefits for a job because performing arts is all independent contractors and freelance," she notes, adding that she's helped many friends navigate the marketplace system.
It's the same story for gig workers, restaurant staff and those in hospitality across the country. But in the years since its enactment, prices for many marketplace plans have risen to hundreds of dollars per month. Marotta says when she aged off her parents' coverage in December, she couldn't afford to pay for the plans she qualified for under the ACA.
"It's already so flawed, and this is the only crumb you're willing to give the American people," Marotta says. "It was already difficult for me to access the ACA, and you're taking that away?"
What is the point, she wonders, of a health system that only works for the healthy?"
On Senate Floor, Gillibrand Denounces Rushed Confirmation Vote Of Judge Amy Coney Barrett To The Supreme Court
Excerpt from Kirsten Gillibrand's Senate speech
"The Affordable Care Act is a matter of life or death. I recently spoke with New Yorker Allie Marotta, who has been living with Type 1 Diabetes since 2006. Last December, she turned 26 and aged off of her parents’ insurance. Because her work is contract- based, she couldn’t enroll with an employer. She made too much to qualify for Medicaid, but not enough to afford 400 dollar monthly premiums.
She was uninsured from December to March and had to ration her insulin, putting her life at risk. It was only when the pandemic started and she lost all of her income that she was able to qualify for the essential plan in New York’s ACA marketplace and access her life-sustaining medication. If the ACA is repealed, Allie will have nowhere to turn.
And she is not alone. My friend Kyle lives with Down Syndrome. His father Bill has multiple pre-existing conditions. Bill now works part-time in order to help Kyle, who needs to be with someone 24/7. They are worried about cuts to Medicaid, which could affect the job coaching Kyle receives at the pizza parlor where he works, and about the repeal of the ACA, which provides them with the only care they can afford.
Rushing to seat this nominee means rushing to put Allie’s life and Kyle’s life and the lives of millions of Americans in danger. And my colleagues are putting them all at risk only to further their extreme conservative agenda."
Sen. Kirsten Gillibrand says Americans Need COVID Relief First, Not a Supreme Court Justice
by John Smith, WAER
"A young woman who experienced a job loss and had to live on a cliffhanger of sorts for several months. Allie Marotta didn’t qualify for insurance to pay for an essential drug to control her diabetes, so she was forced to live on the edge.
“I was uninsured from December to March and couldn’t afford the exorbitant list price of insulin. So, I had to ration my insulin as a result of this which is deadly. When the pandemic started and I lost all of my income, I was finally able to qualify for the essential plan (insurance) and now have access to my life sustaining medication.”
In addition to experiencing a barrier for coverage, Marotta worries if she’s ever denied coverage because of pre-existing condition, it would lead to her own demise.
In the meantime, she anxiously awaits Governor Cuomo to sign legislation that would eliminate cost-sharing for insulin during the pandemic."
Gillibrand accuses Senate Republicans of rushing through Supreme Court nomination
by Alex Gault, HudsonValley360
"Gillibrand introduced Allie Marotta, a young New Yorker who lives with type 1 diabetes. Marotta said she’s concerned she won’t be able to keep the insurance that pays for her insulin if the ACA is struck down by the Supreme Court.
“If we lose access to health care, I’m concerned our legislators won’t be able to act fast enough, leaving those who need life-sustaining medication particularly vulnerable. Everyone needs access to affordable healthcare, and a healthcare system that only works for the healthy isn’t a healthcare system at all.”"
Democrats target health care, Affordable Care Act on day 3 of Barrett hearings
by Matt Knoedler, KITV
"Allie Marotta lost coverage from her parent’s health insurance plan when she turned 26 last December. The New York state resident living with Type-1 diabetes made a tough and life-threatening decision to begin rationing her insulin.
“I made too much to qualify for Medicaid,” Marotta said this week on a virtual news conference with U.S. Sen. Kirsten Gillibrand (D-N.Y.). “But, at $400 or more a month just in premiums, I couldn’t afford a Marketplace plan, either.”
Marotta, who is on the leadership team of grassroots patient advocacy group NY #insulin4all, lost her job in the theatre and arts industry this spring as a result of the coronavirus pandemic. She was soon covered through the federal health insurance marketplace provided under the Affordable Care Act, also known as Obamacare. Her concern now: a conservative-leaning Supreme Court would rule to repeal the A.C.A. and jeopardize health care for herself and millions of Americans.
“Considering it was already so hard for me to get access to health care, I’m concerned that an additional barrier like being denied coverage due to my pre-existing condition will actually kill me,” Marotta said."
US-Canada border closure puts sick Americans' lives in danger
by François Rihouay, Gloria Henriquez, France24
"Allie Marotta and Kevin Wren suffer from type one diabetes. They live near the border of Canada.
‘Largely because of the border closure but also because so many people lost their jobs and their health insurance we’re finding that there’s a pretty significant increase in the amount of people who need insulin who don’t have access to it right now in the United States. Without insulin your body basically deteriorates within hours, and that’s when you’ll see a lot of reports of what’s called DKA (diabetic keto acidosis) and you would eventually die from that if you don’t get insulin.’"
High cost of insulin is sparking worries, political activism
by Carol Polsky, Newsday
"Allie Marotta turned 26 on Dec. 10 and aged out of her parents’ health insurance. For the first time in her life, she had no way to pay for the expensive insulin she needs to survive her type 1 diabetes. She’d been dreading the day for so long the dread has come to feel normal. In anticipation, Marotta had stockpiled a four-month supply of insulin. When that runs out, she said she‘ll go to Canada to buy affordable insulin if she hasn't found a job with health benefits. Marotta paid $10 a prescription for insulin under her parents’ insurance, but now faces more than $3,000 in costs each month for her vials of insulin, syringes and blood sugar monitoring supplies. So on her birthday, she blew out candles at a celebration with friends, called 15 community health centers searching — so far in vain — for low-cost prescription insulin, and went to a meeting of Insulin4All, a group of activists lobbying for state laws to make insulin affordable for everyone.”
Drug costs push some to extreme measures as Trump admin unveils plan to import medicines from Canada
by Erika Edwards, NBC News
"Allie Marotta says she has been rationing her insulin for nearly a year in an effort to save money in treating her type 1 diabetes. "If my doctor is saying I need 15, [the insurance company] is only letting me have five," Marotta said. What's more, Marotta turns 26 later this year, which means she will no longer be permitted coverage on her father's health insurance plan. "I was already trying to stockpile and conserve insulin because I’m pretty sure I’ll be uninsured for a period of time," she said. Marotta works three freelance jobs teaching theater in New York City.”
Turning 26 Is A Potential Death Sentence For People With Type 1 Diabetes In America
by Ellie Hall, Buzzfeed
"Even though she currently has insurance, Marotta still regularly rations insulin. She regularly buys only one of the two types she needs, because she can’t afford the copays for her multiple required medications, doctor’s appointments, and a battery of tests that accompany each visit to her endocrinologist. “I’ll pick up my short-acting before I pick up my long-acting because at least you can do emergency coverage,” she said. “If you’re only going to have one, it makes sense to do the short one. It’s just not ideal because you don’t have that baseline [of insulin], so the slightest thing can affect you and your blood sugar goes up.” It’s dicey, but Marotta said she’s spending close to half her income on student loans and rent. She doesn’t have a choice. “For me, rationing is literally just because I don’t have the $20 to pick it up today,” she said. The list price for a monthly supply of Marotta’s long-acting insulin, according to a receipt she provided to BuzzFeed News, is $740.99. Her current copay is $10.”
Testimony in favor of the New York Health Act
by Allie Marotta for Campaign for New York Health
"Tying health insurance to employment is dangerous for New Yorkers as the structure of a city like this allows for the pursuit of non-traditional employment options like gig work, self employment, and freelance work. These types of employment can provide enough income to pay rent and basic living expenses, but without an accessible healthcare structure, they leave many New Yorkers uninsured and in dangerous and vulnerable positions. I know because that will be me in 48 days. I don’t have an accessible option for healthcare come December, and I will be at risk of dying without access to insulin, which is why I wholeheartedly support the NY Health Act. A healthcare system that only works for people who are already healthy is not a healthcare system.
I want you all to take a moment, and look at me right now. I have a future of good and important work to do. All I need is access to a basic medication, one that has been available for decades. I am here to make you all aware of the failures of our current healthcare system. Now it's on you to get this done.
I have 48 days until I lose access to my medication. How quickly would you legislate universal healthcare if you knew that in a month and a half you could be dead from a completely preventable illness?"
For Young Adults With Type 1 Diabetes, Insulin Costs Can Mean Chasing Benefits, Not Dreams
by Jaime Rosenberg, Evidence-Based Diabetes Management (AJMC)
"Three months from now, Allie Marotta will have her birthday. The Brooklyn, New York, resident has spent her summer applying for doctoral programs in theater. But pursuit of a PhD will not just represent a step forward in her career, it could throw her a lifeline.
When Marotta turns 26 on December 10, she will age off her parents’ health insurance and become responsible not only for the typical expenses of someone her age, such as undergraduate student loans or rent, but also for the cost of a drug she needs to survive: insulin.
It’s a cliff that Marotta and others with type 1 diabetes (T1D) see coming for months or even years before it arrives. In decades past, the quest to finance insulin—and stay alive—would come earlier in a young person’s life; the Affordable Care Act (ACA) only means the search comes later. For those who live with T1D, the ACA means insurers can no longer turn them away for having a preexisting condition. But for too many, turning 26 makes this protection a chimera. Soaring insulin costs and the rise of high-deductible health plans (HDHPs) can put the best products beyond the reach of young adults living on lean budgets.
For Marotta and the other young adults who spoke with Evidence-Based Diabetes Management™ (EBDM), the reality of insulin’s out-of-pocket costs can mean that life decisions and career choices are based not on following dreams, but on finding health benefits.”