SXSW Film Festival 2023: PAY OR DIE

We all know the healthcare system in the United States sucks. There is no way to skirt around the issues. From hospital fees to insurance premiums to prescriptions to the uninsured, the United States of America has fallen behind other wealthy nations in its care of its citizens. And while the issues remain numerous, the cost of insulin has fought its way to prominence, fighting back against capitalism and revealing the true cost of industry greed. Premiering at the 2023 South by Southwest Film Festival, Rachael Dyer and Scott Alexander Ruderman‘s vital documentary Pay or Die lays out the stakes of surviving in America with Type 1 Diabetes. A densely heavy documentary in information and emotion, Pay or Die is a must-see documentary of 2023.

The Ones Left Behind

“I remember” – the initially heartwarming words of Nicole and James as they fondly recall memories and loving attributes of their son Alec. There are so many happy moments shared by the couple, a lifetime of moments. Yet, memories were cut short for Nicole and James after the body of Alec was discovered, his fight with Type 1 Diabetes meeting the ultimate cost. Having been unable to afford his insulin, Alec had begun rationing what he had left. But it wasn’t enough. For Alec, when it came time to be removed from his parent’s insurance as he has aged out, he had the choice of paying high insurance premiums, a deductible, and an OOP, or going without insurance and putting it all to the out-of-pocket cost. While his parent’s insurance gave brought his prescriptions in at $200-300 a month, a month’s supply without insurance would run him $1,300 a month, and even with a decent salary of $40,000 for the midwest, it was not enough.

Alec’s story is the first viewers hear – and it is heartbreaking watching those left behind grieve and fight for him. The documentary wants us to be immediately aware of the ultimate cost that many have fallen victim to, rather than just the possibility lurking on the horizon. As Pay or Die transverses the country, viewers are also introduced to mother and daughter Sandra and Emma in Oregon, as well as Cara at the start of the pandemic in Tennessee. Each struggles with the costs associated with Type 1 diabetes and being uninsured.

The documentary is aware of the stigmas surrounding the perceived management of diabetes – lose weight, eat better and exercise -and quickly addresses these issues. Mayo Clinic’s Dr. S. Vincent Rajumar spends time with the audience explaining how insulin works, as well as the difference between Type 1 and Type 2 Diabetes. While Type 2 can be reversed with time and modification, Type 1 can not. There is no cure and insulin is necessary to sustain life. Pay or Die wants to make sure viewers have an understanding of both these diagnoses, delivering a solid foundation for both information and emotion to come.

Medical Refugees

Pay or Die is also aware that many times, it is the numbers that can speak louder than words. As committees are organized to discuss the issue of emergency insulin, audiences are alerted to 90% of the market belonging to pharmaceutical companies Eli Lily, Sanofi, and Novo Nordisk. While the cost of insulin runs about $3-5 for a monthly supply, since 1996 the consumer price of $21 has risen 1,280 % to $290 per month. And with 34 million Americans in the United States with diabetes, 7 million dependent on insulin, the crisis is larger than many realize.

As viewers become more familiar with Sandra and Emma’s story, mother and daughter both diagnosed with Type 1 Diabetes, the idea of Americans seeking medical refugee was one of the most mind-altering moments within Pay or Die. The insulin crisis is far from new, with legislation weaving in and out of political sessions. And while we constantly hear of the struggle to meet the cost, the idea of Americans leaving the country to just afford their healthcare is mind-blowing.

As viewers watch Sandra and Emma cross the Canadian border to obtain the supplies they so desperately need, a pharmacist in Canada speaks to the difference between the two countries. Where America handles it like a business, Canada handles it like healthcare. As Cara considers leaving her dream job just to obtain proper insurance, she too floats the idea of moving out of the country to afford what she so desperately needs to live. Pay or Die is determined to show the extent patients are willing to go to survive, and the necessary evaluation of costs needed to make it possible. When it costs less to book a roundtrip flight and housing to another country to obtain insulin – and doctors are giving this advice – the cost to survive had taken on a whole new perspective

Political Charge

Yet, as heartbreaking as it is to hear the stories and to watch American citizens turn to other countries for help, Pay or Die is not without its fight or its hope. While Nicole and James have lost their son Alec, they have not lost the fight to ensure any other family shares in their grief. Taking the fight to the Minnesota Capital, The Alec Smith Insulin Affordability Act is introduced, discussed, and fought for. With this bill, a person who is unable to afford their insulin would go to a pharmacy, fill out a form indicating their financial situation, the pharmacist would give them the insulin they need and the pharmaceutical companies would receive the bill.

Through rallies, protests, and meetings, the bill is met with both enthusiasm and pushback, the first attempt to pass the bill failing. Every moment is captured and displayed, sometimes slowing the pace of the documentary, but many times giving it the breadth of the journey. And as viewers hear the names of lives lost to “household rationing”, it is also the emotional toll that must be continually paid by those fighting as they relive the losses over and over again.

Conclusion:

Pay or Die‘s release comes on the heels of Eli Lily’s recent announcement that they would be cutting the cost of insulin by 70% and capping insulin Out of Patient costs at $35 dollars a month or less. While the three companies followed each other’s price increases, currently Eli Lily stands alone in their decision. Even with the recent decision by Eli Lily, Pay or Die proves itself to be one of the most vital documentaries in the fight for the right of healthcare. As Dr. S. Vincent Rajumar states in the beginning, the cost of prescription in general in the United States is high, briefly touching on the overall issues throughout our entire healthcare system.

Pay or Die chronicles the battle to improve insulin costs and the healthcare system, capturing the grief of those lost but also showing the hope and resilience of those who choose to fight and demand more.

Pay or Die premiered at the SXSW Film Festival on March 11, 2023!

Watch Pay or Die