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.
Pieces of the Health Care Puzzle; responses to Rachel Madley’s op-ed
New York Times, Letters, October 5, 2019
To the Editor:
Re “Does Anyone Really Love Private Insurance?,” by Rachel Madley (Op-Ed, Sept. 18):
Every time I hear TV pundits discussing how Americans will not want to give up their private insurance, I want to scream. I would happily give up my insurance in favor of a Medicare plan.
Almost every year my employer changes our plan because of rising costs, and each plan increases the premium, the deductible, the co-pays or all three. When I belonged to a union, at every contract negotiation we had to fight management over our insurance and often give up other benefits in order to keep a decent plan. Having a Medicare plan would have spared us a great deal of time, energy and stress.
My best friend from college was diagnosed with Type 1 diabetes as a teenager. After sizing up her options, after graduation she moved to Norway, where she had family, in order to take part in its socialized system, because of the difficulties that Ms. Madley describes.
This system is inhumane. It needs to change.
To the Editor:
I am an internist and mother of a 25-year-old diagnosed with Type 1 diabetes at age 5, and Rachel Madley’s Op-Ed hit home for me. My family has “excellent” private insurance. Yet, over the two decades since my son’s diagnosis, my husband and I (and now my son himself) have spent countless hours filling out endless forms, arguing with our insurer’s pharmacy benefits managers, watching the price of insulin climb, and worrying about what happens when my employer-based private insurance no longer covers my son.
I know that the physicians and nurses who have cared for my son have also spent hours filling out forms and arguing with insurance-related entities on his behalf. As a physician, I have similarly frustrating interactions with my patients’ insurers. Each insurer has its own set of byzantine forms, rules and processes to navigate.
I would gladly relinquish my “excellent” private insurance for a public insurance plan that covered necessary, evidence-based care for all Americans. I bet many of my patients would, too.
The writer is editor in chief of the Annals of Internal Medicine and senior vice president of the American College of Physicians.
To the Editor:
In the 1990s I was head of a nonprofit organization with about 300 employees. We provided them with private insurance coverage. Every few years we changed insurers. If, in October, an employee was told, “Next year, your insurance coverage will switch from Aetna to United Healthcare,” the reaction might have been a shrug or a mild grumble, or, more likely, a question: “Will the coverage be as good or better?”
The reaction would not have been, “Oh, no! I love Aetna.” The employees appreciated the insurance but did not love the insurer. If anything, they just hoped that a new insurer might provide better benefits with less hassle.
Had the new insurer been Medicare, it’s unlikely that employee reaction would have been any different. But in due course, the employees would no doubt have been saying what I, as a senior citizen, now say: “I love Medicare.”