Craig and Mike Zolotorow
Ellicott City, Maryland
Phyllis Zolotorow is used to fighting for health care. For 24 years, she has battled insurance company bureaucracies to keep her son, Craig, alive.
Craig was 2 when he was diagnosed with an immunodeficiency disorder – commonly called “boy-in-the-bubble syndrome – that would require monthly infusions of medication for the rest of his life.
A year after Craig became ill, the insurance company changed his diagnosis to HIV/AIDS so it could deny coverage. Phyllis fought them and the State of Maryland forced the company to change the diagnosis back and cover the expenses or lose their ability to do business in the state.
Craig spent his childhood being treated by 12 specialists at Johns Hopkins Children’s Center. He battles diabetes, anemia, kidney disease and more. He had seven surgeries in three years and commonly spiked fevers up to 105 degrees.
By the time Craig was 10, the family’s 20 percent co-pay on his medical bills reached $250,000.
He reached his lifetime cap on insurance when he was12.
By then, he was eligible for Social Security disability payments with Medicaid as a co-insurer.
But as Craig’s medical bills declined and Mike Zolotorow, Craig’s dad, made more money, Medicaid paid less. The Zolotorows had to get a legal separation so Craig could qualify for Medicaid. In 1999, Phyllis had to leave her job to care for Craig full-time.
Four years later, Mike was seriously injured at work. He received workers compensation for a year, but at the end of 2004, his employer canceled his health insurance, and workers’ compensation paid only for treatment directly related to his injury.
In September 2005, Mike felt sick, but would not go to the emergency room because of the cost. Ten days later, he had a massive heart attack that left him dependent on an implanted defibrillator. Six months later, he needed quintuple bypass surgery.
If a public option had been available, Phyllis says, Mike would not have had to rely on employer-based insurance.
He could have been treated while his heart disease was still mild, his surgery would have been less extensive – and less expensive – and he would have been able to go back to work, adding to the tax base, instead of being permanently disabled.
The hospital applied for Medicaid and Social Security Disability Income, and Medicaid paid for his catastrophic illness. Once he received Medicaid approval, he was able to be placed on the list for a heart transplant.
“Without any insurance, a human being in the United States is denied the privilege of a life-saving transplant.”
Mike falls into what is known as the Medicare loophole – he has to wait two years to qualify for Medicare. Any expenses not covered by Medicaid until then are added to his debt. Physicians can refuse to treat him and he likely will have to rely on what care he can get in the emergency room, and he will have to pay for that.
Mike’s income on SSDI is too high to be able to qualify for full Medicaid. In Maryland, the maximum income for a family of two is $392 per month.
“By the time the deductible was met, he ended up with coverage only every other three months or so,” Phyllis said. “So we have uncovered expenses we may never be able to pay off. We get harassing calls daily from numerous medical collection agencies.”
Mike is one of tens of thousands of Americans who fall into this loophole because the Medicaid thresholds haven’t been raised along with disability payments.
Disability attorneys say there is no reason for the two-year wait for Medicare eligibility, but Congress has made no move to change it.
“I have no choice but to believe that the federal government wanted my Mike to die so Medicare didn’t have to pay his medical expenses, “Phyllis said.
Mike is on Medicare now, which Phyllis says is excellent.
“I can tell you through my experience I would opt for government-run insurance any day,” she said.
As for Craig, he is in college. He has the intelligence and capacity to earn a good living, but as it is now, if he ever makes over $30,000 a year, he loses his Medicaid eligibility, and no private insurer will take him.
“It’s cheaper to make sure all Americans have access to health care,” Phyllis said. “A citizen able to access health care is a healthier citizen. Healthy people work and add to the tax base and seek less or no social service assistance from the state or federal governments. A healthy working citizen adds to the economic growth of the United States.”