“Diabetes fully ripped my life and potential away. I always grew up thinking I would be a professional musician. I feel like I’m still mourning the loss of what my life would have been.”
--Sarah Tackett, age 26
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.
“Having a chronic illness is already a huge burden to carry around,” Marotta said in an interview with EBDM. “To add to that, this whole layer of uncertainty and having to stretch and make things work and get creative is really frustrating.”
Marotta has been managing her T1D since it was diagnosed in August 2006 during a back-to-school physical. The diagnosis explained her extreme thirst, frequent urination, and weight loss—things she had been experiencing for some time—all classic symptoms of T1D.
If a doctoral program accepts her, Marotta can join a health plan offered by the school. However, that won’t happen until July 2020, which is when the academic year begins and she can finally enroll in the school’s plan, leaving a nearly 7-month gap in coverage. This means scavenging for extra insulin and supplies now or shoveling out the full cost of insulin and supplies starting in December. And there is the possibility that Marotta will not be accepted into a program, which would send her searching for a job that offers benefits.
For the time being, Marotta has had to get creative. She’s identified tools like Catch,1 which offers a financial safety net to those without an employer benefit plan. She also recently began using a Dexcom G6 continuing glucose monitoring system, the first time she’s used this technology. Marotta is already thinking ahead about how she will pay for sensors if she is temporarily uninsured; a 3-month supply of sensors will cost nearly $3000. She knows that some people with T1D end up “hacking” their systems to extend the life of sensors beyond the approved 10-day wear.2
Marotta is among the 1.25 million people with T1D in the United States3 who are absorbing the costs of 2 decades’ worth of steep price hikes on insulin. In 2016, a research letter appearing in JAMA revealed that insulin prices nearly tripled between 2002 and 2013, jumping from $4.34/mL to $12.92/mL. During the same period, estimated spending for insulin per patient increased from $231 to $736.4 And the increases didn’t stop there. In January 2019, the Health Care Cost Institute released a report showing that between 2012 and 2016, insulin spending per patient almost doubled, from $2864 to $5705, during the 5-year period.5
These price hikes have resulted in people making the trek to Canada, where insulin can be up to 90% cheaper.6 The issue has also struck the attention of Capitol Hill,7 with patients, family members, and T1D advocates testifying before Congress about the dire consequences of the skyrocketing costs of insulin, which has forced some to choose between paying the steep price for the life-preserving medication or compromising their lives by skipping or rationing doses. Hearings in Congress examined how health plans, pharmacy benefit managers, and a system of rebates have pushed patients to this point; a Senate bill seeks to squeeze rebates out of the system and drive prices back down to 2006 levels.8
The fallout from the cost of insulin has made headlines over the past year, with news outlets detailing stories of young adults rationing supplies or switching to older insulin formulations sold over the counter after aging off their parents’ insurance. In the most serious cases, patients have died. In July, 27-year-old Josh Wilkerson suffered a series of strokes that killed him.9 He had aged off of his stepfather’s insurance and found himself unable to afford his prescription insulin. As a result, he turned to an OTC human insulin, Novolin ReliOn, that at $25 sells for one-tenth of the price of more effective versions.
Compared with the newer insulins, human insulin has a delayed onset of action and is less predictable than the rapid-acting analogue versions.10 Analogue insulins have been shown to improve treatment adherence and satisfaction because of fewer injections, flexibility in timing of basal analogues, and less fear of dose adjustments.11 Young adults who spoke with EBDM said they fear being forced to switch back to older formulations after having success with analogue insulins.
For Those With T1D, Planning Begins Early
Of the many parts of the ACA, 2 stand out in popularity among voters: the ban on insurers rejecting people with preexisting conditions and the provision that allows young adults to stay on family health plans until they turn 26.12,13 This second provision took effect in May 2010, years ahead of the rest of the law; at that time, young adults had the highest uninsured rate in the country at 30%.14
For those with T1D, the change gives young adults and their families more time to plan, but that does not always prevent tragedy. Wilkerson’s story represents the worst-case scenario. Knowing the dangers associated with not having coverage, many young adults with T1D take preemptive measures to avoid being left in this position. For Marotta, conversations with her family to plan for her future began 2 years ago. For Sarah Tackett, a 26-year-old living in New York City, her planning started when T1D was diagnosed in 2013 when she was 20.
After being misdiagnosed for 6 months, Tackett received her T1D diagnosis in 2013 while she was attending college as a voice major. Back then, her most difficult decision was whether to major in music education or vocal performance. In the months before her diagnosis, Tackett was sleeping for up to 18 hours a day; although she passed all her classes, she was falling behind.
Once she learned she had T1D, Tackett knew she had to find a job with benefits to prepare for the day she turned 26. She switched her major to communications, knowing it would increase her employment options.
“I thought, ‘What am I going to do?’ Try and be a successful musician for 4 years, and then when I get cut off from my parents’ insurance, get a ‘real’ job? It’s not just switching your lifestyle, it’s also sometimes giving up what you love and doing something more practical,” she explained.
“Diabetes fully ripped my life and potential away. I always grew up thinking I would be a professional musician,” Tackett said. “I feel like I’m still mourning the loss of what my life would have been.”
The Rise of High-Deductible Health Plans
When the ACA was introduced, its goal was to make health coverage more accessible and affordable so that Americans could see physicians and get prescription drugs when they needed them. However, the ACA coincided with a trend that was already in motion among employers and, some argue, hastened it: the rise of the HDHP.
Intended to encourage the use of high-value services, HDHPs have lower premiums and higher deductibles relative to other plans. The percentage of people under the age of 65 enrolled in a HDHP increased from 25.3% in 2010 to 47% in 2018.15
The results of studies on HDHPs indicate that the high cost-sharing associated with the plans creates barriers that delay or reduce care for people with diabetes. A study published last year in Diabetes Care found that after patients switched to a HDHP, emergency department (ED) visits dropped by 4% and direct hospital admissions dropped by 11%, which resulted in 3.8% lower total expenditures.16 However, patients with lower incomes had significant increases in high-severity ED visit expenditures and hospitalization days, suggesting that these patients are attempting to minimize health spending by avoiding care, causing missed opportunities for prevention and treatment and resulting in more severe hospitalizations.
Much-needed relief is coming to those with diabetes and other chronic conditions with HDHPs who’ve paid high costs for their medications. In July, the Internal Revenue Service (IRS) and the US Department of the Treasury released guidance allowing HDHPs with health-savings accounts to cover chronic care treatment, such as insulin, before a patient meets their deductible.17
“With this new IRS guidance, no insured American with diabetes should ever have to pay the full price for their insulin again,” said A. Mark Fendrick, MD, director of the Center for Value-Based Insurance Design at the University of Michigan, in an email to EBDM.
The feature of the ACA that has helped people with T1D the most, the protection for people with preexisting conditions, faces uncertainty as the law is again challenged in court.18 This has those affected by T1D questioning what will happen if the entire law is overturned.
Is the Past the Future?
Lala Jackson has T1D diagnosed at age 10 in 1997, more than a decade before the ACA arrived. In those days, young adults aged off of their parents’ insurance at 19 or when they were no longer in school full time. The month before she finished college, Jackson’s mother warned that she would be kicked off the family’s insurance shortly after graduation and that despite her best efforts, she could not help. Back then, insurers in the individual market could turn down someone with T1D, so Jackson was unable to purchase insurance on her own.
She graduated in 2009 in the midst of the financial crisis and found herself without insurance and unable to get a job with benefits. She considered joining the Peace Corps, but her application was turned down due to her T1D status. (In an email to EBDM, a Peace Corps spokesperson said applicants with T1D are evaluated on a “case by case basis,” and may serve if their diabetes “is well managed and the country the volunteer serves in can support their management” of the condition.)
Living in Savannah, Georgia, at the time, Jackson took an internship working 30 hours a week at $10/hour and tried to pay for things herself; her rent cost $500 and her insulin, $100 per bottle. Jackson uses 3 to 4 bottles of insulin a month. She went to the local Medicaid office for help, only to be told they could not help her unless she was pregnant.
When her internship ended in August 2010, Jackson moved in with her mom in Richmond Hill, Georgia. That October, she moved to Atlanta, Georgia, where she accepted a job without benefits with the hope that if she worked hard, she would be offered health coverage. Between October 2009 and May 2010, her pay increased from $800 to $1500 per month, her rent was $650 per month, and insulin cost $125 per bottle. After 9 months at the job, she was taken on full time and offered benefits.
During the year and a half that Jackson lived without insurance, she would ration her insulin. She also landed in the hospital 3 times, which added ED bills to her plate.
“Most people who knew me during the time would say I was just existing, that I was kind of a shell at that point,” said Jackson in an interview with EBDM. “I only survived because of all the people who understood what was happening,” she explained, reflecting on the time when her friends would pool their resources to try and help her, including her rent.
Fast forward to 2019, and the current mix of high prices, rebates, cost-sharing, and benefit design can mean that despite the ACA, today’s young adults with T1D face similar challenges.
Marotta told EBDM her days of seeking care when she needs it are coming to an end. “Now I have the freedom to go to urgent care whenever I think something is wrong and be proactive about it or go see my primary care,” she said. “When I’m uninsured, seeing a doctor is not an option, because it will be so expensive.”