03/26/2012 05:19 pm ET Updated Mar 29, 2012

Health Care Reform May Come Too Late For Kenneth McNelly

Kenneth McNelly was supposed to die two weeks ago.

On March 13, 2011, a brain scan unmasked eight tumors in his brain. Diagnosis: Cancer, treatable but not curable. A doctor gave him one year to live.

With that kind of weighty information in the air, money wasn't the first thing that came to mind. McNelly, 50, and his wife, Linda McNelly didn't have much, but were comfortable. Even though Linda had lost her job cleaning a church in 2009, the family had health insurance and a household income that was above average.

But within months of the diagnosis, the McNellys had no income, no health insurance and hard decisions to make about the cost of keeping Kenneth McNelly alive.

"I just kind of sat there, I think slack jawed," said Kenneth McNelly about the moment he was diagnosed with brain cancer in a Knoxville, Tenn.-hospital, not far from his home in Rockwood, Tenn. "Linda was crying and at the same time trying to tell me it would be OK. But I really don't think either one of us understood what was coming, just the utter turmoil that develops when you get sick."

On Monday, the U.S. Supreme Court began hearing arguments on the constitutionality of the Affordable Care Act, the law passed two years ago that advocates say will provide health insurance to about 30 million of the nation's 50 million uninsured. The court will weigh seemingly obscure questions about constitutional law, but for people like the McNellys who desperately need affordable health care, the court's decisions are a matter of life and death.

After the brain scan, doctors told McNelly he would need brain surgery immediately, followed by courses of radiation and chemotherapy. With such an aggressive treatment plan, McNelly could no longer perform his job as a maintenance worker at a senior living facility. Soon enough, he would hardly have the energy to stand for more than a few minutes at a time.

Yet his wife, daughter and two preschool-aged grandchildren all depended on the income and health insurance from his job. State workers and McNelly's sister helped him enroll in a public health insurance program for the very sick or poor, and apply for federal disability payments.

The health insurance, Tennessee's version of Medicaid called TennCare, kicked in almost immediately. The federal government took six months to approve McNelly's disability claim.

McNelly's younger sister and her husband, friends and the McNellys' church family at Mt. Vernal Baptist Church wrote checks to cover the family's mortgage, put food in the refrigerator and gas in the family's car. The McNellys cut what they could, dropping at-home Internet service and their home phone. They didn't replace the gravel in the driveway, and just dealt with a muddy path to the house when it rained.

Some bills, the family simply had to leave unpaid.

Then, September brought good and bad news. McNelly's disability benefits -- $1,892 each month -- were approved. A family that had been living on about $59,000 a year just months before was grateful to have $22,704. They needed every penny to cover living expenses.

But, McNelly's cancer also had spread. Doctors found a tumor near his stomach. He went back into surgery.

Three months later, TennCare administrators called. McNelly's income was too high to remain enrolled in the program; he brought in $100 too much each month.

"I'll be honest," said McNelly. "I was a little mad. I thought, you know I have worked and paid in for 35, nearly 40 years. And now, there's not enough to help me?"

When TennCare dropped McNelly, he was in the middle of a 28-day course of chemo delivered by pill at home. The chemo made his stomach and skin burn. His entire body turned boiled-lobster red. Sometimes, when he was awake, McNelly was in so much pain he would just sit and cry.

"When he was first diagnosed, I was the biggest advocate of Kenny doing everything and anything he could to stay alive," said McNelly's sister Deborah Alford, who's helped him navigate the health-care system. "We love him and want him here with us. But I did tell Kenny at that time that I didn't know what I would do if I was in his shoes."

McNelly's wife started making calls. Paying for health insurance through his last job would cost $1,700 per month. Private insurance plans weren't willing to cover cancer care for an already ill man.

One of the couple's daughters found a state-run insurance pool for seriously ill adults, a provision of the Affordable Care Act that has already gone into effect. That program would offer comprehensive coverage. But, it would cost a minimum of $350 a month -- nearly 20 percent of the McNelly's income -- and would only cover Kenneth McNelly. The McNellys decided they couldn't afford that option either.

"When you are healthy, especially when you are healthy and have health insurance you cannot imagine the turmoil, the utterly unbelievable choices you have to make," said McNelly.

If the Affordable Care Act survives the legal challenges it faces this week, McNelly and people like him will likely face a much less dire set of options. After 2014, under the law, private insurance companies could no longer refuse to cover health care for people with pre-existing conditions or charge them more than they do other clients.

The Affordable Care Act also opens Medicaid programs such as TennCare to people who earn more money -- anyone living on an income within 133 percent of the poverty line. For a family of five like the McNellys, that figure is $30,602 this year. The law also creates lower-cost insurance options by encouraging competition among health insurance companies.

It does so by requiring most healthy Americans to buy health insurance -- the much-debated mandate -- which would spread the cost of covering the very ill across a larger insurance pool. To help those who earn too much to qualify for the nation's expanded Medicaid program, the government also will provide health insurance subsidies.

Critics insist that the provisions of the law effectively trample the rights of states to shape Medicaid eligibility and spending. Others say the law takes the unprecedented step of forcing Americans to purchase a product whether they want it or not.

For the McNellys, the year 2014 and the Supreme Court's expected June decision feel very far away. Skyscrapers of unpaid bills are taking shape on the McNellys' kitchen counter.

The McNellys don't know how much they owe. They think the tab totals in the tens of thousands. "I just know it's big," said McNelly. "We're fixing to sit down and add it all up, lay it all out. It's pretty darned intimidating. That's the price tag on my life."

Now McNelly is just trying to make it to May 29. That's the day he is supposed to walk his oldest daughter through a Tennessee meadow and into a white wedding tent on the family's 23-acre farm.

In February, McNelly's oncologist -- a cancer specialist -- gave him what these days passes as good news. Instead of taking chemo by pill, Kenneth would get his next round pumped into his blood stream at a reduced-price.

"It's a kind of relief, but not a solution," said McNelly. "I mean we're at the point where you look at your worn down toothbrush and think well, maybe I could use it another two weeks."