Just 21 months into my mother's cancer treatment, she had reached her medical insurance policy's cap for chemotherapy -- $100,000. As if dealing with cancer were not enough, she now had to deal with the reality that our health care system had left her financially exposed.
Lost in our daily debates on health care reform is the devastating impact our current system has on people like my mom.
She, like 25 million others, was underinsured. They, along with the 46 million uninsured, are forced into a high-stakes game with their lives. Many of these people have jobs yet are left out of our system. Along with other disparities in health care, our employer-based system also discriminates. Where you work matters greatly.
Mom was self-employed and, like more than 5% of the country, was forced to purchase medical insurance as an individual on the open market. These policies are typically more expensive, provide less coverage and don't receive the federal tax subsidy given to employer-based plans.
Seemingly overnight, my mother, 56 at the time, was faced with chemotherapy, surgery, more chemotherapy and radiation. She soon became nauseated and physically weak. Being self-employed meant that when she did not work, she did not get paid. Her income fell, and her business struggled just as tens of thousands of dollars of bills began to pile up.
All of the physical, emotional and spiritual angst she was feeling was compounded by the complexity of her insurance policy, which was written by the Mid-West National Life Insurance Co. of Tennessee.
Mom's insurance had odd provisions. For example, she had a $1,000 limit per day on radiological scans and chemotherapy. When she needed a CT scan of her chest, abdomen and pelvis, she had to spread those out over three days when they could have all been done in one appointment.
Her policy also had bizarre limits on what drugs could be given on a single day, which resulted in multiple visits to her oncologist. These limits, along with the $100,000 lifetime caps on radiological scans and chemotherapy, made her care far more convoluted. Treatments were often delayed or changed, depending on her coverage.
A growing problem
The underinsured are more likely to go without medical care because of cost, including skipping tests or treatments and not filling prescriptions. Compounding the problem is that fewer employers are even providing coverage for their employees. In 2008, 63% of employers offered health insurance compared with 69% in 2000.
Like many working Americans, my mother had no safety net. She was not poor enough, yet, to qualify for Medicaid. She could apply for Social Security disability benefits and hope to survive two years to qualify for Medicare. As if this were not enough, her insurance premium increased more than 33% during the two years of her illness. Why? According to a letter she received, Mid-West blamed the rapid increase on rising national expenditures due to "heart and liver transplants," "experimental procedures" and "state mandates for specific diseases." This seemed less than sincere.
It has been more than two years since my mother lost her battle with cancer. I wonder whether Mid-West continues to sell policies such as these. I called multiple times, yet agent after agent refused to answer my questions. One thing is certain: The individual insurance market is plagued by problems.
Insurance is essentially a social contract -- each of the insured pays into a pool. If one of the insured gets sick, that money helps pay for her and vice versa. When people enroll, they generally don't worry about their medical history or restrictive caps. And the insurance company banks on getting more healthy people than sick ones. Large group insurance works this way.
But when a person buys a policy on the individual market, insurers can and do weed out sick or high-risk people. So they refuse to cover certain diagnoses and provide caps. This is what my mother faced. What happens if patients like her exhaust their health coverage and need emergency care? We all pay for it through hospital uncompensated care, and payments for such care from the government or hospitals absorb the cost.
What must change
The president's plan addresses much of what I've just laid out. People with pre-existing conditions could get insurance, restrictive caps would fall away, and an insurance mandate would bring in young, healthy people into the insurance market to offset the sick who are using the system.
Millions in my mother's predicament would benefit from such changes, no doubt saving lives and helping families avert financial ruin.
After my mother died, her life insurance helped my father recover from the $125,000 in bills that were piling up on the dining room table. Before her illness, my parents had good incomes and resources. Toward the end, they were living off a home equity line of credit.
We have waited long enough for universal, equitable insurance coverage for all Americans. We need an intelligent and honest debate. And we need to remember the many people like my mother.
Stephen Patrick, a physician, is house officer in the Department of Pediatrics at the University of Michigan.
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