I’ve noticed something new lately: When I tell some people the story of how my son died, they want to know whether he was working when he got sick.
The answer is yes, he was working. He was also a non-traditional college student with a 3.75 grade point average, and he was a community volunteer.
Then I ask a question of my own: When did being unemployed become a crime punishable by death?
My son’s life – and death – is the perfect example of how a decent, hard-working person will fare under the Republicans’ so-called “replacements” for the Affordable Care Act – a law that likely would have saved his life had it been in place sooner.
Michael Timothy Danforth was born on Nov. 3, 1974, my 22nd birthday. We knew there might be a problem with his health because I’d been diagnosed with a rare virus in my first trimester and had been advised to have an abortion and try again.
I chose to proceed with the pregnancy. The chair was at the table already, as far as I was concerned. My son was born with exstrophy of the bladder, a rare birth defect in which the abdominal wall doesn’t close and the bladder winds up on the outside of the body, inside-out. The surgery done to correct the defect involved removal of the bladder and implanting his ureters into his sigmoid colon.
What we didn’t know at the time – and wouldn’t find out until too late – was that this leaves the person at extremely high risk of colon cancer. Michael was never an easy child. In addition to his physical problems, he had attention deficit disorder with hyperactivity and we spent most of his childhood advocating for him in school systems that didn’t know how to deal with an extremely bright child who couldn’t sit still and who believed he didn’t have to do homework if he was able to ace every test.
Most of his peers thought he was weird. His humor flew right over their heads. He hated pop music and listened to the blues, classical music and an eclectic mix of artists that most of his peers had never heard. He loved science fiction, especially “Star Trek.”
As a teenager, he began drinking and using drugs. He was pretty good at hiding it, and it wasn’t until he failed at community college that I realized he had a problem. He told me he wanted to take off a semester and then he would go back, but it would be eight years before he walked into a classroom again.
We didn’t realize he would never again be able to get health insurance that would cover anything related to his birth defect. He was off my policy and uninsurable because a birth defect was a pre-existing condition, as though he had chosen to have it.
Mike overcame his addiction at age 22, after nearly taking his own life, and his recovery work included helping other people to get and stay sober. He moved from downstate New York, where we lived, to Schenectady, near the state capitol of Albany, and settled in. He carried his 12-step group’s emergency phone and he was happy to get up in the middle of the night if someone needed to talk.
“He could close the restaurant at 1 a.m. and have a 7 o’clock class and if I called him at 4, he’d get out of bed and listen to me,” his best friend said. “He never complained.”
He met a beautiful, bright and talented young woman named Janet and married her in June of 2000.
They loved food and their cats, heavy metal music, their nieces and nephew, and each other.
But Mike was beginning to worry about being able to maintain his sobriety. He had left restaurant work because he couldn’t get insurance, and he went to work managing a convenience store. He hated it, and the insurance that came with the job wasn’t covering the annual colonoscopies he needed. He was fortunate enough to find a gastroenterologist in New York who would accept monthly payments, but the stress of the job and of worrying about how he would make it if he got really sick was beginning to take a toll.
By 25, Mike had already had polyps removed from his colon, and he knew he was going to have to find a way to get good insurance. He and Janet decided to go back to school. She was accepted into the Savannah College of Art and Design, and he enrolled at Armstrong Atlantic University.
Mike had found a rental in a suburban Savannah mobile home park. It was cheaper than an apartment and it had a yard that would allow him to grow some herbs and peppers, and put up a trellis for morning glories. He was so full of plans both large and small. He was majoring in history with a minor in philosophy. He planned to go on to law school and hoped to work for a legal-aid group.
“I think poor people deserve good lawyers,” he told me one day. “And I’m going to be one hell of a good lawyer.”
I could see that. He was brilliant. He had this uncanny ability to dismantle things and then reassemble them without a manual. His brother and I walked in one day to find his clothes dryer in pieces on his kitchen floor. “It was squeaking,” he said. “I f*ing hate that.” A couple of hours later, the dryer was back together and humming. No squeak.
Mike lived just an hour away from his brother and they became closer. Mike might have told him, but he never told me, that he couldn’t find a physician in Savannah who would perform a colonoscopy and allow him to pay in installments. The one doctor who would see him wanted $2,300 cash up front. Of course, Mike and Janet didn’t have that kind of money. They gambled that he would be OK until they were finished with school.
They lost the bet.
In late 2004, Mike began having trouble keeping food down. He was constipated, which wasn’t supposed to happen with his plumbing. He started losing weight.
Still, his doctor refused to do a colonoscopy until his weight dropped to about 115 pounds. He was six feet tall.
During the procedure, the doctor found his colon entirely blocked. But he didn’t tell Mike or Janet; he just had the nurse send him home. Later, we saw the record of that colonoscopy, where the doctor had written, “Couldn’t finish procedure. Next time use (pediatric) scope.” We also saw the words, “Patient needs a colonoscopy but can’t afford it.”
Three weeks later, in February of 2005, Mike was hospitalized with kidney failure. He was vomiting fecal matter, and his weight had dropped to 110 pounds. This would lead to his claiming to be an expert on all things that tasted like crap.
It took five days to stabilize him enough for surgery to remove the blockage.
After surgery, Mike recovered remarkably well and learned to care for his colostomy. He had plastic tubes running into his kidneys through his back and connected to plastic bags to collect the urine. I felt comfortable returning home to Asheville, NC.
The next day, he got the pathology report. I still hear his voice over the phone as he delivered the news to me.
“Mom, it’s cancer. I have cancer.”
That call was one of those sharp demarcations in life. There’s before that moment and then there’s after. My son was going to outlive me, and then maybe he wasn’t. If he’d been able to buy insurance, he would have had the colonoscopies. Or if — because he was deemed uninsurable — he had been able to get Medicaid under an expansion like the Affordable Care Act, his colonoscopies would have cost about $1,000 a year. But our health care system said no, and now Mike’s care would cost taxpayers nearly a million dollars and he would die.
Mike applied for disability to help cover his living costs. His approval would take 37 months. He would be dead nine days before his first check arrived.
He also applied for Medicaid and food stamps because he would be unable to work during chemotherapy and radiation treatments. He was denied Medicaid because he and Janet owned a fairly new car and they had tuition money in their bank account. A charity stepped up to pay for his care, and he was offered $10 a month in food stamps. He turned down the food stamps, insulted that a person with no income was eligible for so little help.
He tolerated the treatments pretty well, but a few weeks afterward, the vomiting started again. He began to lose the 25 pounds he had managed to gain back. His doctors found a stricture in his small intestine that had been caused by radiation.
They decided to take a “wait-and-see” approach. They waited until he was 104 pounds before taking any action. On the morning of surgery, his surgeon told us the oncologists were at fault for waiting so long. Five days after the surgery, the pathology report came back. There were a few viable cancer cells. His surgeon told us, matter-of-factly, as though he were talking about a dead toenail, that Mike was going to die.
I followed him out of the room to ask why he wasn’t going to try and save my son’s life. Couldn’t they surgically remove the few viable cells? Mike’s dad had survived stage-three colon cancer — partly because when a small metastasis had been found, they had removed it. But Mike’s dad had money and excellent insurance. Mike had neither, which left him with few, if any, options.
“Oh, we’re not going to do that,” the surgeon said with a dismissive wave. I dropped the F-bomb and went back into Mike’s room. The surgeon followed me back, saying he wouldn’t be offended if we sought a second opinion. That’s when Janet lost it. She’s barely 5 feet tall and the surgeon was over 6 feet, but he backed out of the room as she poked him in the chest, reminding him that her husband’s life took priority over any doctor’s ego.
Mike was in the hospital nine more days, and not one doctor came in to talk to him during that time.
Janet and I knew we needed to find help for Mike, so while she took care of him and her coursework, I started calling cancer care centers. I probably called 20 before Dr. Herbert Hurwitz at Duke University Medical Center agreed to do a consultation.
On the day of the appointment, six weeks after Mike’s second surgery, Hurwitz took one look at Mike’s surgical incision and asked when the last time was that Mike saw his surgeon. It had been just five days.
“What did he say about your incision?” Hurwitz asked.
“He said I’m healing slowly because I was so malnourished going in,” Mike said.
“That and a life-threatening infection,” Hurwitz replied as he took off his gloves and sat down to write a prescription. “Duke has just adopted you. We’ll help you get Medicaid, and we’ll try to save your life. I can’t guarantee we can get everything paid for.”
“I’d rather be 80 and still paying off chemo than die in my 30s,” Mike told him.
Mike had to leave Janet to get Medicaid in North Carolina, where the eligibility rules are slightly more liberal than in Georgia. Medicaid is administered by the states and each state sets its own rules within overall guidelines set by the federal government Since his new legal residence was going to be with me in Asheville, I had to write a letter stating that they had split. It was one of the most difficult things I had to do during his entire illness.
He started chemotherapy again, and he did spend some time in Savannah with Janet, but they had to be careful because he could have lost his Medicaid. When Janet finished college, she got a job in Raleigh. Since Mike couldn’t live with her, because of Medicaid income restrictions, his best friend, James, decided to get a job in Raleigh and move so Mike would have a home there.
For the next two years, James cared for Mike, changing dressings, cleaning, cooking and even paying bills as they waited for Mike to be approved for disability. Mike had tried to work, but he was too sick to stay on his feet in a hot restaurant kitchen for several hours at a time. We who loved him helped with his bills, but he longed for the dignity of being able to pay his own way.
In the fall of 2007, Mike once again began having pain and problems eating. Scans didn’t show any cancer, so his doctors thought it might be adhesions and scar tissue from all the surgeries he had endured. But on Feb. 11, 2008, doctors discovered fluid in his abdomen. It could have been lymphedema — an accumulation of fluid caused by damage to lymph glands — or it could be end-stage cancer. They removed the fluid and tested it for cancer.
Word came back seven days later – it was cancer. Instead of recurring as tumors, it had returned as what’s known as undifferentiated tissue – a sort of ribbon coating the inside of his colon. Scans didn’t show it. I was on my way to work when he called. Within an hour, my husband and I were headed toward Raleigh. He might have a year to live, the doctors had said, if chemo worked.
Mike had exactly six weeks left. That’s when he gave up the 12-step addiction group’s emergency phone, although he would continue to counsel people until the day before he died. We tried chemo, but after two treatments, it was obvious it wasn’t doing any good.
Hurwitz cried when he told Mike there was nothing more to be done. “You’re a good person,” he said. “You don’t deserve what’s happening to you.”
After the callous disregard Mike received in Savannah, I didn’t expect to see such compassion. Perhaps if we’d had access to Duke from the beginning … Perhaps if we’d been able to get insurance … But it was too late for what-ifs. I was bringing my son home to die.
“How long do you think I have?” Mike asked as I was pushing him in a wheelchair, heading for my car. “Maybe two weeks?”
“Oh, God, I hope it’s more than that,” I said.
Janet and James both came out from Raleigh to help care for him. Friends and family members came to visit. We were rarely without company.
One afternoon, Mike, who had played the Cancer Card as a joke for three years, told me I would have an untrumpable card to play: The Dead Kid Card.
I told him I didn’t want it, but he argued that it was being dealt and I’d better figure out how I was going to play it.
“How about if I use it to argue that no one deserves to die from lack of access to care?” I said. “How about if I use it to advocate for universal access to care?”
He smiled and gave me his blessing.
The night before he died, Mike and I were alone, watching “Star Trek” and nibbling chocolate.
“You know, I’m having a good time here,” he said.
I was stunned. He was enjoying himself despite the pain, the weakness, the knowledge that he had, at most, a few days to live. He could still find joy, even now.
“I can’t ever complain about anything again,” I said.
“Oh, you’ll find a way,” he said, and then he laughed.
Mike died with me by his side at 3:50 p.m. on April 1, 2008. He slipped away, leaving me furious that my heart was still beating. How could I face life now? Why was I the one still sitting there?
I have played the card I’ve been dealt. I have lobbied for universal access to care. I have been to Washington and stood among Congressional leaders. I have stood in front of 100,000 people at a Moral Monday event in Raleigh to talk about the numbers of people who die the way my child did. I have been arrested three times trying to speak to North Carolina legislators about the importance of expanding Medicaid. I will continue to fight for care for everyone until it happens, or until my own heart finally stops and I join my boy.
I fought for the Affordable Care Act because it was a step in the right direction. Its mandate that people with pre-existing conditions be able to get affordable coverage, together with the subsidies for insurance premiums, would most likely have saved my son’s life.
I had hoped his absence would get easier with the passage of time, but It does not. I miss picking up the phone at midnight to hear, “Hey, Mom, I knew you’d still be up,” and then engaging in a long conversation about politics, history, music, theology – whatever.
I miss baking bread and watching him eat an entire loaf in an afternoon, saying, “The only thing wrong with this bread is that it’s not at my house.”
I miss his impatience with traffic, bad drivers, willful ignorance and bad food.
I miss his maniacal laugh and his practical jokes.
I miss watching “Star Trek” with him.
I miss slapping his hand away from the turkey and stuffing as I prepare Thanksgiving dinner.
I miss telling him he could have our birthday as his own when I’m done with it.
Multiply this loss by 45,000 – the number of Americans who died each year from lack of access to health care before the Affordable Care Act (1), according to a Harvard Medical School study published in 2009 by the Journal of the American Medical Association. That’s one person every 12 minutes if you do the math. And try to wrap your head around the desire of some people to go back to that level of human suffering. Try to rationalize the deliberate vilification of people who need the kind of help my son needed. I can’t.
My son was a good human being. He didn’t deserve to die from neglect.
No one does.
But if the attempt to repeal the Affordable Care Act is successful, if the attempt to turn Medicaid from an open-ended entitlement that helps those who need it to capped block grants is successful, more people will die the way my son did.
With the ACA, we have reduced the number of uninsured by about 20 million — and thus cut back on the number of preventable deaths (2). Most of these deaths are in states that have not expanded Medicaid. Under the Republicans’ plans, the Urban Institutes estimates that nearly 30 million more people would go uninsured (3).
People who lack access to care are not lazy people hoping for handouts. They are decent, hardworking people who deserve to live as much as – and I might argue more than – any senator who would vote for this despicable attempt to give more profits to the health care industry while increasing human suffering on an epic scale.
To return to the way things were before the Affordable Care Act is an act of war on the people of this country. It is murder. I have no other word for it.
- Andrew P. Wilper, Steffie Woolhandler, Karen E. Lasser, Danny McCormick, David H. Bor, David U. Himmelstein, “Health Insurance and Mortality in US Adults”, American Journal of Public Health 99, no. 12 (December 1, 2009): pp. 2289-2295.