Uninsured Mike Died. His Healthcare Journey Was Treacherous


(6/2017 interview w/ Mike's mother. Oil, broken mirror on linen, 40 ins. x 30 ins.)


Artist Note (2017)

Is healthcare a human right in this country or not? Yes or no?


Mike died at 4 p.m. April 1, 2008.


Our recent history is shrouded with the pain and suffering, both physical and mental, of people whose lives ended too soon because they could not get the medical attention they needed -- in the United States of America, in the 21st Century.


Michael Danforth is one such person. I call his portrait a death portrait to make the point that when our healthcare system fails, it can lead to early death.


Michael Danforth died in 2008 at age 33. He had a congenital anomaly that would require continuous monitoring throughout his life, a near impossible task for an uninsured person. Without health insurance Mike could not get uninterrupted preventive and comprehensive care he needed for the chance at a good, productive life.


"I think about the lives he saved and wonder how many lives might be lost because he isn’t here, all because some Americans don’t want government to interfere in our health care system. I know all too well how broken that system is. I hope those who think it’s just fine don’t have to find out the same way I did just how badly it’s broken." From Mike's mother.

President Obama signed healthcare reform into law in March 2010. Full implementation – when people like Mike could actually buy insurance with the help of a subsidy or get it outright through Medicaid expansion -- did not happen until Fall 2013 with those policies going into effect in 2014.


The new healthcare law did not come in time for Mike.


In 2018 I am still painting and writing about what life looks like for a sick person without health insurance. Why? The Trump administration has taken extraordinary steps to sabotage the healthcare reform law known as the Affordable Care Act (ACA) or Obamacare.


Outright repeal efforts have failed. But deliberate attempts to seriously weaken the Affordable Care Act are succeeding. Premiums are expected to spike for some. Others are facing a reordered Medicaid in some states that is causing many thousands to go uninsured.


One year into the Trump presidency, the country saw an additional 3.2 million uninsured people. “The biggest jump in the uninsured rate in nearly a decade.” Reuters reported.


What does all this mean? If the Trump administration’s goal is to get us back to pre-ACA days, we can expect the body count to rise.


A Families USA study read the statistical tea leaves in a 2012 report. Over 26,000 people/year died from lack of access to healthcare -- over 2,100 deaths/month. Studies measuring death rates have been scrutinized though one thing is certain. Before healthcare reform people like Mike were counted among the 43.8 million uninsured in 2008. And like Mike, many died.



Sadly, we can expect many more deaths like Mike’s as more people go uninsured if this president continues on his present course to undermine healthcare reform.

We will never know what Mike’s contribution could have been had he been able to get regular check-ups including colonoscopies to monitor his rare bladder disorder.


Mike’s life and early death are reminders that the price we pay for not having a bona fide universal healthcare system in the US is very costly. Real people suffer and die. Mike was one of them.


Is healthcare a human right in this country or not? Yes or no?


Leslie Boyd is Mike’s mother. She is a journalist turned activist. She writes “I know all too well how broken that system is. I hope those who think it’s just fine don’t have to find out the same way I did just how badly it’s broken.” Leslie tells Mike’s story for this Art As Social Inquiry painting. (Links in the story are mine.)


 

A study. Oil on canvas, 24 ins. x 20 ins.

(from a 2017 interview with Leslie Boyd)

Michael Timothy Danforth, Deceased, Age 33

as told by Leslie Boyd, Mike's mom (links are mine)


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?


I am Leslie Boyd, founder of WNC Health Advocates, and mother of our inspiration, Mike Danforth. I was a newspaper reporter for nearly 30 years before Mike died, and I was compelled to move to advocacy.


My son Michael Timothy Danforth was born on my 22nd birthday, Nov. 3, 1974. That was before sonograms, so it was a surprise when we discovered he had a serious birth defect, exstrophy of the bladder.


We went through a number of corrective surgeries with Mike, including one to hook his ureters into his sigmoid colon. What that meant was that he wouldn’t have to wear a urine bag. It also meant he would be at an extremely high risk for colon cancer as an adult, although we didn’t find that out until he was 20.

We didn’t realize that once Mike was off our insurance policy, he would never again be able to get health insurance that would cover anything related to his birth defect. He was uninsurable because a birth defect was a preexisting condition, as though he had chosen to have it.


(Mike’s mother said Mike could get group insurance through a job once. But there was a rider that said the policy wouldn’t cover anything related to his birth defect.) Mike became addicted to drugs and alcohol in his late teens, flunked out of community college (something I didn’t know was possible), and entered a disastrous marriage. By the time he was 22 he was ready to die. He ended his marriage and then stood on a bridge, intending to jump. But instead of ending his life, he walked away to begin a new, sober life. He spent several weeks in rehab and then became active in 12-step groups. “I prayed a lot,” he told me later. “I told God that if he would help keep me sober, I would spend the rest of my life chasing drunks.” That’s what he did. He became a sponsor to other people who were trying to get and stay sober. No matter what, he was there for people. He remarried, and a year later he and his wife decided to go back to school.


Mike was a chef, and chefs don’t usually get health insurance. He knew he would need it, so he and his wife gambled that Mike would be OK until they finished school, and could get good jobs with health insurance benefits.

Newly relocated to Georgia, Mike found a rental in a suburban Savannah mobile home park. It was cheaper than an apartment, plus it had a yard that would allow him to grow some herbs and peppers. He put up a trellis for morning glories. Mike was 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. He 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.”


~

When Mike and his wife lived in Albany, NY, Mike’s doctor put him on a payment plan. Although uninsured, Mike was able to get colonoscopies every year. In Savannah, GA, the doctors would only write in his records, “Patient needs a colonoscopy but can’t afford it,” The final time, they added, “Will advise (patient to go for) financial counseling.”

The Georgia doctor who finally agreed to see Mike wanted $2,300 cash up front for the procedure, and that doctor charged him for every office visit. The three ER visits were all billed to Mike, even though all the doctors did was give him strong laxatives and pain pills when the problem was a malignant tumor blocking his colon. The doctor finally agreed to do a colonoscopy when Mike was at about 115 pounds. He was 6 feet tall. During the procedure, the doctor found Mike’s colon entirely blocked. But he did not tell Mike or his wife. He just had the nurse send Mike home. Later, when we gained access to Mike’s records, we saw the doctor’s notes. “Couldn’t finish procedure. Next time use a (pediatric) scope.” When Mike got really sick, the ER doctors finally had to admit him to save his life (at this point, discharging Mike could have meant charges of criminal neglect, since he was hours from death). In February 2005, Mike was hospitalized with kidney failure. His weight had dropped to 110 pounds and he was vomiting fecal matter. This would lead to his claiming to be an expert on all things that tasted like crap. It took five days to stabilize Mike 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. The tubes were connected to plastic bags to collect the urine. I felt comfortable returning home to Asheville, NC. The next day Mike got the pathology report. I still hear his voice over the phone. “Mom, it’s cancer. I have cancer.” The cancer – signet-ring adenocarcinoma – was Stage 3. 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 in the Affordable Care Act, his colonoscopies would have cost taxpayers 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 die nine days before his first check arrived. He also applied for Medicaid and food stamps because he was unable to work during chemotherapy and radiation treatments. Mike was denied Medicaid because he and his wife 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. Mike 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. The doctors 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 the doctor 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. Mike’s wife 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. After surgery, and before finding Dr. Hurwitz, Mike developed an infection in his surgical wound. The surgeon told Mike he was healing slowly because he was so malnourished going into surgery. I believe the surgeon knew about the infection but decided to let it go because Mike would die soon anyway. Either that or the surgeon was incompetent. Mike arrived at Duke six weeks after his second surgery. His doctor saw the serious infection in Mike’s surgical wound. He asked when Mike had last seen his surgeon. “Five days ago,” Mike said. “What did he say about your incision?” Hurwitz asked. Mike told him what the surgeon had 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 divorce his wife to qualify for 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 Mike’s new legal residence was going to be with me in Asheville, I had to write a letter stating that Mike and his wife had split. It was one of the most difficult things I had to do during his entire illness. Meanwhile, Mike was still chasing drunks and saving lives. A friend in dire need shared with me, “I had the plastic bag on my head already when he showed up because I hadn’t answered my phone.” Another friend said he could stop by at 3 a.m., and Mike would get up and talk to him. “Mike made me a good person,” one friend said. “He wouldn’t let me go out for coffee until we did something nice for someone. And on and on … Meanwhile, Mike began losing weight and experiencing pain again. The doctors at Duke ran scans and other tests but didn’t see any tumors so they assumed the problem must be from all the surgeries Mike had. By this time he had a colostomy and two tubes that ran from Mike’s kidneys, out his back and into two urine bags, which he tucked into the pockets of his plaid flannel pajama pants when he was at home. Finally, on Feb. 18, 2008, the doctors told Mike the cancer was back. They tried chemo but he kept losing weight. I brought my son home to be with me so I could care for him at the end. His ex-wife and his best friend were there to help. At Mike’s memorial service, people kept walking up and hugging me and telling me how Mike had saved their lives. “You knew when he walked into a meeting, it would be a profound experience,” one friend told me. “He was so wise.” Mike died sober. Through all the pain and the awful treatment, he stayed sober. He never lost his twisted sense of humor or his love of life, even to the end, when he was too weak to get out of bed. The night before he died, he told me he was enjoying himself as we watched Star Trek and nibbled on dark chocolate. He died at 4 p.m. April 1, 2008. His first disability check came nine days later. I used the back pay to pay off the debt I incurred taking care of him. Mike’s memorial service turned into a litany of the practical jokes he had played on people. I miss those jokes. I miss cooking with him. I miss how he loved the bread I bake. (“The only thing wrong with this bread is that it’s not at my house”). I miss the long discussions late into the night. I miss calling him early in the morning on our mutual birthday and both of us singing, “Happy birthday to MEEE!!” at the top of our lungs. I miss leaving silly messages on his phone. I miss my permanent designated driver and his crazy laugh. I miss his lack of patience with stupidity and willful ignorance and bad drivers and the commercialization of Christmas. I miss having anything that broke fixed. I miss going on photography expeditions into Great Smoky Mountains National Park with him. I think about the lives he saved and wonder how many lives might be lost because he isn’t here, all because some Americans don’t want government to interfere in our health care system. I know all too well how broken that system is. I hope those who think it’s just fine don’t have to find out the same way I did just how badly it’s broken.