By Rachel Madley
The New York Times, September 17, 2019
Twenty minutes after I learned I had Type 1 diabetes — after narrowly avoiding a diabetic coma — a nurse pulled my parents away from my bedside and urged them to call our insurance company immediately. If they didn’t call right away, she warned, insurance would not cover the stay. At that moment — now 10 years ago — my parents had to choose whether to comfort their sick and frightened 14-year-old daughter, or spend hours on the phone with our insurer. Of course, they left me to make those calls, and my nightmarish relationship with the insurance industry began.
Type 1 diabetes is an autoimmune disease that destroys the body’s ability to produce insulin or maintain normal blood-sugar levels. There are no days off from this illness. Without careful monitoring and daily insulin injections, Type 1 diabetics risk blindness, kidney failure and death.
On top of the full-time job of monitoring blood sugar, American diabetics and their families have to work a second shift fighting insurance companies to cover their care. Even though my parents had insurance and both worked multiple jobs, the hospital bills, insulin and supplies drove them into debt, forcing them to forgo insurance, and medical care, for themselves.
When I turned 19, I was kicked off my parents’ plan. I took out thousands of dollars in extra student loans to buy insulin and diabetes supplies. After the Affordable Care Act passed, I was able to regain insurance, a high-deductible plan that cost me hundreds of dollars for each doctor’s visit and insulin refill.
So when I hear politicians talk about how much Americans love their private health insurance, I think: Really?
I am alive today not because of insurance companies but despite them. My insulin refills have been delayed countless times, not because of medical reasons, but because of what seem to be arbitrary insurance limits and requirements to continuously document my condition, which is permanent. Once, my insulin refill was delayed so long that I ran out, just when the insurance office closed for a three-day weekend. I was a student, away from home, with no other way to pay for my prescription. Terrified, I rushed to the pharmacy in tears. The pharmacist took pity on me and slipped me a vial of insulin without charge, saving my life.
The worst part about my story is that it isn’t unique, at least not in this country. Young adults with Type 1 diabetes suffer life-threatening diabetic ketoacidosis — a complication caused by insufficient insulin — at much higher rates in the United States than in Canada. Canada’s single-payer system provides seamless, lifelong coverage. But in the United States, diabetics must wage war with insurance companies to get the care we need, if we have insurance at all.
I’m glad that politicians are finally talking about health care reform. But those who only want to “protect” the Affordable Care Act or add a public option to our already byzantine mix of private and public plans are missing the point. Americans don’t “love” their private insurance, as many of them claim. They’re grateful for any coverage at all. Americans love their doctors, nurses and pharmacists, because those are the people who save our lives.
What diabetics — and all Americans — need is care that is lifelong and portable, covers all medically necessary services and drugs, and is accepted by all doctors and hospitals. Only a single-payer version of “Medicare for all,” in which care is publicly funded by one entity and privately delivered, would guarantee coverage to everyone in the United States, and eliminate the greed and administrative waste of private insurance.
It has been 10 years since my diabetes was diagnosed. I can’t help but think about the doctors and nurses who cared for me with such skill, my parents who sacrificed their needs for mine and the pharmacist who kindly slipped me that vial of insulin. I’m alive today because of them.
Will I have to live the next 10 years holding my breath through every doctor’s visit, praying that insurance will approve my medication, and in time? Will I ever be able to stop my endless fights with insurance middlemen? I know I’ll never live a day without worrying about my health. But maybe one day I, and millions of other diabetics in America, can live without worrying about how to pay for it.
Rachel Madley, a Ph.D. student at Columbia University Medical Center, is a student board member of the New York chapter of Physicians for a National Health Program.
By Don McCanne, M.D.
Love your private health insurance?
People do not love facing a high deductible that may make health care unaffordable.
People do not love not being able to go to the physician or hospital of their choice because the insurer limits care to restrictive provider networks.
People do not love the instability of coverage due to factors such as loss of employment, change of residence, or change in qualification for subsidized plans.
People do not love paying high COBRA premiums to maintain insurance after termination of employment at a time that income has ceased.
People do not love paying outrageous drug prices set by pharmaceutical firms and pharmacy benefit managers.
People do not love the uncertainties of delays or denials due to prior authorization requirements of the private insurers.
People do not love tolerating their flat incomes because potential wage increases are diverted to increases in employer-sponsored insurance premiums instead.
People would not love contributing to half a trillion dollars in recoverable administrative waste if they realized they were doing that.
All of these and much more would be resolved by enacting and implementing a single payer model of Medicare for All. Now that would be a program that people really can love.
We are very grateful for the efforts of the author of this op-ed, Rachel Madley, and the many other student members of Physicians for a National Health Program (PNHP) and the student arm – Students for a National health Program (SNaHP) – for advancing the cause of health care justice for all. The future of health care is in their hands.
The 2019 PNHP Annual Meeting and Leadership Training sessions will be held in Philadelphia November 1st and 2nd. It is particularly important for the future of health care to see that we have a great turnout of students and residents. Donating to the Nicholas Skala Student Activist Fund can be particularly gratifying because of the knowledge that the funds will be directed to helping students master the policies and politics of effective, equitable health care reform for all:
Nicholas Skala Student Activist Fund
2019 Annual Meeting and Leadership Training
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