Health care access can be matter of life or death
My favorite patient was born with the same congenital heart condition as Jimmy Kimmel’s son and had exactly the outcome that Kimmel predicted.
My first night as a pediatric cardiology trainee, I helped to care for a fiveyear-old girl who had just had surgery for her heart problem. Her heart stopped three times; three times, I went to tell her parents and grandparents that I did not think she would make it. But she did — and we all bonded.
I went to her graduation ceremonies from grammar school and high school. She had become a wonderful adult with a sense of humor that was phenomenal. She was not able to do physical work but was capable of desk jobs. She had developed a dangerous irregular heartbeat that we were able to control with medication. Her parents had few resources, and she was covered by Medicaid.
Six months to the day after her 19th birthday, her mother called, barely able to speak: They had found her dead in bed. They did some checking, and she had not refilled a prescription for her medication after her Medicaid ran out — six months before. She had a pre-existing condition that no one in her small town would cover — and there were no large employers. This experience devastated all of us — and motivated me go back and get a degree in public health — with the goal of helping the uninsured.
This was the situation 27 years ago. For the past seven years, the Affordable Care Act, or ACA, (which definitely has its warts and needs major surgery) covered pre-existing conditions. The reason for the pre-existing condition provision in the first place is that people are rightly concerned that they might develop a serious condition that would not be covered if they bought insurance when they already had the condition (e.g. developing cancer or heart disease). In the three years between 2007-2009, a congressional investigation of the four largest insurance companies showed that they had denied coverage to 651,000 people — 1 of every 7 who applied — because of pre-existing conditions. Before the ACA, that denial of coverage was all perfectly legal. The preexisting condition exclusion was the only “stimulus” to have healthy people buy insurance — and it worked: Healthy people did buy insurance.
The American Health Care Act (AHCA) that the U.S. House of Representatives recently passed permits each state to apply to the federal government to permit pre-existing condition exclusions, as long as they do one of the following: “reduce average premiums for health insurance coverage in the state; increase enrollment in health insurance coverage” or “increase the choice of health plans in the state.” Imagine how easy it will be for the state, for example, to add just one health plan, and they could meet the criteria — thus permitting pre-existing exclusions.
The bill also requires that states that permit pre-existing exclusions have in place ways to help people with pre-existing conditions, such as high-risk pools where people with high medical expenses can be paid for separately. Texas has a high-risk pool, with 2.6 percent of eligible people actually participating in the pool. Why do so few people participate? The rates are permitted to be more than the current insurance rates, which people can’t afford to begin with, and the pool has a pre-existing condition exclusion requiring the ill person to wait a year before coverage. No wonder people don’t sign up for high-risk pools.
The AHCA, meanwhile, is projected to add 24 million people to the ranks of the uninsured.
A number of members of Congress from both sides of the aisle have said after the passage of the ACA-replacement bill that they expect the Senate to fix it. This is akin to someone jumping out of a plane without a parachute alongside someone who does have one and expecting the better-prepared sky diver to embrace the other while both land safely. I hope the Senate has a strong parachute.
Had the Affordable Care Act existed at the time, my favorite patient would still be alive. But she surely would have died with the proposal now before Congress.