Why We Should Prioritize Access-related Advocacy
In this opinion piece, a D-dad urges readers to rethink attitudes about advocacy.
“She has glucose and ketones in her urine,” the doctor said matter-of-factly. He knew that I, a practicing veterinarian, would know what that meant. “Go to Baptist ER. I’ve called ahead—they’ll be waiting for you.” A few hours earlier, Dr. Naidu had listened to my wife Cindy’s concerns about the weight loss, frequent urination, and fruity odor that our then three-year-old daughter Lily had been experiencing.
In that instance, our lives changed forever. We went from being a young family full of blissful innocence to one living with chronic illness. Over six years later, we’re still learning to deal with proverbial slings and arrows that come with Type 1 diabetes. Lily is a healthy, happy nine-year-old who loves horses, her sister (most days), going to work with her dad, playing basketball, and being with her friends. She has taken ownership of her diabetes by counting carbohydrates, checking her own blood sugar, and reminding when an infusion site change is due. Her HbA1c is excellent; and, thanks to technology to which only a privileged few have access, her blood sugar stays in range the majority of the time.
Not immediately after diagnosis but over time we began thinking about advocacy. We began participating in the annual local JDRF walk and petitioning elected officials to support the Special Diabetes Program. We served on committees and, for a time, I even served on the local JDRF chapter’s board of directors. Through the generosity of our friends and family, we raised thousands of dollars annually to support JDRF’s mission to fund research that would hopefully lead to a cure.
I am forever grateful for all the love and support we’ve received from JDRF, especially our local chapter, and I appreciate and respect some of the tremendous work the organization has done and continued to do. But over time my attitude toward advocacy has begun to shift. Through the influence of friends and advocates I’ve met in the “diabetes online community” (DOC), I have grown more and more concerned about issues related to the affordability of and access to insulin, technology, and other therapies. I have investigated insulin pricing, and I have begun to understand just how insane the U.S. healthcare system is, particularly in terms of the rising cost of insulin and other prescription drugs.
When Lily was diagnosed, we had a high-deductible plan, so we had to pay 100% of our healthcare costs out of pocket until our deductible was met. The pharmacy technician gathered up all the syringes, test strips, lancets, glucagon kit, and insulin, and said with hesitation, “That will be $750. Are you sure you want to get all this now?” Having been told our daughter’s life was on the line without it, we politely answered that we did in fact need it all.
At the time, we didn’t give it a lot of thought. Thanks to my excellent job and employer, we had the money in the bank account. But what if we hadn’t? What if we couldn’t have paid for all that? What would our options have been? And what would have happened to our little girl whose body was being ravaged by diabetes?
Now, years later, we once again have a high-deductible plan. As our premiums have risen, and as we’ve faced other battles including my wife’s cancer diagnosis in 2015, I’ve learned the intricacies of insurance plans, deductibles, copays, and out-of-pocket maximums. We have made the choice, due in no small part to the more affordable premiums, to enroll in a plan that carries with it a $3,000 individual and $6,000 family deductible. By modern standards, that’s a pretty good plan with relatively low deductibles.
We are privileged. I make very good money, especially for a veterinarian, and we don’t struggle as much as many others. I am able to divert enough money from my paycheck to our health savings account to cover our medical bills, and that amount doesn’t leave us struggling with our other expenses. My wife works several jobs to supplement our income, and we enjoy a good life.
But many families don’t have the resources we have. Historically, high-deductible plans were generally only selected by families like ours with the disposable income to afford the out-of-pocket costs. But a 2016 Kaiser Family Foundation survey found that 29% of workers were enrolled in such plans, up 9% from 2014. A 2017 report from the CDC showed the number to be closer to 40% of workers. I often worry about what our lives would be like if our circumstances were different. What if we couldn’t afford the $6,000 family deductible or the premiums? What if we didn’t have $300 to fork over every time Lily needs a vial of insulin? What if I get kicked by a horse at work and can’t do my job anymore?
The current state of prescription drug pricing is unacceptable. We pay hundreds of dollars for a decades-old medication that costs a fraction of the list price to produce. Our healthcare system includes a complicated web of kickbacks and middlemen and corporate jet-flying millionaires who ransom our children’s lives. Everyday, people choose between paying for their medications or paying for food, rent, and utility bills. Some are dying because they can’t afford their insulin or other drugs. This is an immoral stain on this nation.
The question is, what do we do? How do we fight this? Where do we devote our limited time and energy? Perhaps we should begin to shift our opinions of advocacy. I encourage readers to investigate and support groups like Patients for Affordable Drugs, T1International, and the Type 1 Diabetes Defense Foundation, all of which are bringing the issue of insulin pricing to the forefront. Furthermore, I encourage readers to push groups like JDRF and the American Diabetes Association to devote more time and resources to issues related to access and affordability.
As long as our fellow community members are facing the very real threat of death due to outrageous insulin prices, none of us should rest easy. But for a change in circumstances, their struggles could very well be ours.
Read our recent interview with T1International here.
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