Tuesday, January 27th, 2008, was a chilly and slightly overcast day in Las Vegas. Typical weather for that time of year. I recall it vividly, as if it were yesterday. What should have been a carefree routine day for our family turned out to be anything but.
In the weeks prior, my beautiful and vivacious 10-year-old daughter was noticeably irritable. She had lost considerable weight (which I mistakenly attributed to a growth spurt). Her thoughts were frequently disjointed. She was unusually tired and drinking excessive amounts of water. Instinct told me to take her to the ER, despite her vehement protestations. Thank goodness I let instinct win out.
The ER physician at the Summerlin Hospital diagnosed her with type 1 diabetes (T1D). It turned out she was hours away from a life-threatening diabetic coma.
For reasons unexplained, my daughter’s autoimmune system attacked her pancreas, effectively shutting down its ability to produce insulin – the hormone that controls the body’s use of blood sugar. My daughter would be insulin dependent the rest of her life.
I was in shock. Her two siblings broke down crying. Our lives had changed in a moment - in ways that I could not predict at the time. Our illusion of physical, emotional, and financial well-being was shattered.
I quickly became a pseudo endocrinologist, learning all there was to know about T1D - mainly that it cannot be prevented, and doctors cannot tell who will or will not get it. Scientists believe that a viral infection can randomly trigger the autoimmune system to attack the pancreas and shut down the production of insulin.
I learned that the absence of insulin means glucose can’t penetrate cells and thus accumulates in the blood, causing short and long-term damage to every organ in the body. I learned carb counting, insulin dosing, and how extreme weather, stress, sports, and illness wreak havoc on glucose levels. I learned how to use a life-saving glucagon (the equivalent of an epi-pen to someone with allergies). I learned statistics: women with type 1 diabetes have a shorter life span by 13 or more years than women without it; and type 1 diabetics in those younger than 40 – especially in their teens and twenties – are dying in large numbers from lack of diabetes management.
I also learned about the astronomical costs associated with diabetes care: test strips, long and quick acting insulins, pumps and continuous glucose monitors and their supplies.
I was relieved that we had an excellent PPO insurance plan that would allow my daughter access to all she needed to manage this complicated and chronic disease while living the best, the longest, and the most productive life possible. My relief however was short lived.
I got a letter in the mail. Sixty days following our 5-day hospital stay, our insurance company sent a letter advising that my daughter was no longer eligible for coverage given her new diagnosis. Huh? I panicked.
Then I appealed – repeatedly.
Finally, I fought – with my insurance; with other insurance companies that refused to cover a pre-existing condition; with the Insurance Commissioner’s office; and with state legislators. All to no avail.
In the meantime, I was now responsible for those astronomical costs. I had no choice. My daughter’s life depended on it. It wasn’t like postponing a teeth cleaning.
Barring any complications, we were looking at almost $3500 a month. My daughter was testing her blood sugar 14 times a day at a cost of $1.00 per test strip or $420 a month. Her long and quick acting insulin pens plus needles together cost $1300 per month. Her twice monthly doctor visits and labs cost $650. The insulin pump recommended by her endocrinologist was $7,000 in addition to the monthly pump supplies at $550; plus, the $1500 continuous glucose monitor with monthly supplies averaging $450.
To compound matters, several months into our learning curve my daughter was hospitalized for diabetic ketoacidosis – a life threatening state where blood sugars run so high that the body begins to shut down. That bill? $51,000.
I was battling the tyranny of the health insurance industry and I was losing. I had nowhere to turn. My daughter was uninsurable. I was devasted on many levels and at my wit’s end. A friend suggested Medicaid. I knew nothing about Medicaid nor how it worked, and I was afraid to find out but I had no alternatives. I couldn’t bear the ongoing costs to save her life, a life now dependent on insulin and diabetes medical supplies.
I now understood the extent to which our healthcare system was in a state of disarray – perhaps in crisis. Insurance provides protection against possible eventualities. I paid for those protections through costly PPO premiums, yet, when needed most, my daughter was denied those protections.
Under Medicaid, I faced another set of difficulties. I was grateful to have been able to temporarily use public assistance as a stop-gap measure against the financial hemorrhaging, but I was frustrated by the disregard my daughter experienced as a patient at the mercy of government control.
My daughter’s healthcare options were dismal. Wait times to see her physicians were often up to three months in advance. Medicaid would not allow her to use the brand of insulin and test strips prescribed by those physicians – and not all insulins and strips are created equal. At one point, she could not get coverage for insulin pens and had to measure and inject through syringes. For her insulin pumps and continuous glucose monitors, all designed to help the diabetic better manage the complications of the disease, coverage was denied. These denials put her diabetes care, and thus her life, at risk.
I was concerned for my daughter’s well-being. For several years we struggled and ran into complications. I rarely had a good night’s sleep.
Coverage through our previous insurance was held hostage at the hands of non-medically trained CEOs who were driving healthcare policy for profit rather than for patients.
Coverage through Medicaid was held hostage at the hands of non-medically trained government bureaucrats driving healthcare policy based on the fatal belief that government can effectively manage the healthcare needs of 325 million citizens – controlling treatments, services, and how much doctors and hospitals are reimbursed for their services.
Coverage under the Affordable Care Act – where we went next – was no better, and this time I was a paying customer!
When the government doesn’t sufficiently pay providers, the result is inevitable shortages and denials. What good is free or affordable health insurance if the healthcare it promises is not available.
Now, we’re back on private insurance, but the premiums and deductibles are outrageous. It is what it is but that’s not good enough. Health care is one of the most personal and vital services we consume as Americans. As I’ve made my way through the maze that is American health care, I’ve also learned what doctors think of the system.
Dr. Linda Girgis, in her book The War on Doctors: And the Destruction of U.S. Healthcare, states that the ability to practice medicine in America is being taken over by 3rd parties – insurance companies and the government – and that doctors and patients need to take back medicine. Quality healthcare has suffered a severe blow at the hands of non-medically trained entities sitting in the healthcare driver seat.
Patients like my daughter need to be at the center of medical care and not the bottom line for insurance companies or government agencies. Doctors need to be free to make medical decisions in collaboration with their patients, without intrusion from other parties.
Dino M. Scanio, a Pediatric Orthotist, says that, “Doctors are the experts that have the right to make decisions based on the interests of their patients. They are held to a high standard by a medical code of ethics. If a doctor orders it, then it should be covered by the insurance company.”
Phillip Longman and Paul S. Hewitt, in a 2014 article in the Washington Monthly entitled After Obamacare, write that, “Due to medical errors and other forms of harmful care, contact with the American health-care system is now the third leading cause of death in the United States.”
I can only hope and pray that we can fix things. That we are not destined to end up with a health-care sector completely controlled by greedy, bureaucratic, or political monopolists, rather than the patients who have the most at stake and medical experts who have made the greatest investments.
It’s been ten years since my daughter’s diagnosis on that gloomy day back in 2008 and I’m grateful that she’s doing well – at least for now. With the future of our healthcare system uncertain, there’s no telling what will happen should complications arise from her disease.