Healthcare Reform: The Cost of Staying Alive
Four-year-old Escher Griffin was using pillows to construct something intricate in his living room. His aunt, Kacie Nicholson, asked what he was building.
“An obstacle course, of course,” he said.
Escher knows about obstacles. Born with a nonworking digestive system, his life thus far has been a long and painful journey through the intricacies of the American healthcare system. In the colorful string of kid stuff that he sometimes wears around his neck, each bead represents a surgical procedure. He’s got enough beads for two long necklaces.
In January, after watching her son teeter between life and death for so long, Alicia Griffin felt she and Escher had finally made it through the worst of his problems. Although Alicia has worked steadily for years, she was unemployed when she discovered she was pregnant with Escher, so Medicaid helped pay for the delivery and Escher’s subsequent heavy medical expenses. Shortly after his birth, Alicia went back to work at a full-time job that provided her with health insurance, but due to Escher’s age and the severity of his problems, he continued under the Medicaid umbrella.
After months of shuffling between Cook Children’s Hospital and his grandmother’s house in Arlington, after six organ transplants at a Miami hospital, the kid with the thin curly hair was at long last home and rapidly morphing into a normal little boy.
Then Alicia got the letter. It said that the federal government had totted up the income Alicia receives from her job with a telecommunications company and decided she made enough to disqualify Escher from receiving Medicaid benefits. That meant the government would no longer pay for the $700 a month in medical supplies and drugs, including the anti-rejection medicine that Escher must take each day, or for his numerous doctor’s visits.
It turned out that the Medicaid officials were wrong — they had credited Alicia with a tad more income than she makes. After weeks of phone calls and visits to the Social Security office, Alicia cleared up the misunderstanding, but the incident gave her a glimpse of a possible future. Medicaid had saved Escher’s life; losing it could have cost him that life.
“I can make a little more money but not much more, or Escher will get cut off, and I don’t know who [what private insurance company] would take him,” she said in February, before the passage of the sweeping new federal healthcare bill. The idea of losing their safety net had left her in a panic.
For the many North Texas residents with full-time corporate jobs that offer healthcare plans, the insurance debate is something theoretical, waged over coffee and on television. For those who are freelance workers, service industry employees, artists, musicians, uninsurable due to prior health problems, or unemployed, serious healthcare problems can quickly take over daily life.
To qualify for Medicaid in Texas, an individual applicant must make less than $1,593 a month and have less than $2,000 in total resources, including savings. The gap between that income level and the level at which folks can afford health insurance leaves a broad segment of the population stuck in a constant state of worry about what might happen if they fall ill.
For musician Guthrie Kennard, who has been suffering from hepatitis C for almost 15 years, his recent loss of health insurance influences whether or not he can take care of potentially life-threatening problems related to the virus. Not having insurance almost kept freelance photographer Pete Rearden from finding out about the tumor growing on his brain stem. Now that he knows, his uninsured status, in his eyes, qualifies him for nothing more than a “Band-Aid” kind of care. And for local rock icon Michael “Mace” Maben, even good health insurance didn’t stop the trauma or the outrageous expense of his recent treatment for small cell lung cancer.
Rising costs of health insurance plans are making them prohibitively expensive for a huge portion of America’s population. Right now, roughly 44 million people are without sufficient health insurance, a risk that leads to financial ruin for many. Healthcare “is the number-one thing pushing people into bankruptcy,” said Fort Worth consumer credit advocate Bud Hibbs.
Few people seem certain about how the passage of President Barack Obama’s healthcare reform package will affect them directly. Nonetheless, folks are adopting a cautious optimism — and maybe even allowing themselves a small tentative sigh of relief.
Relief in any physical or financial sense would be a miracle for Kennard, a career musician who had the dream job, happy marriage, and health insurance he took for granted, until it all started falling apart, beginning with his health.
In 1996, at 45, Kennard at first figured he was simply overly tired from the worldwide tour he’d just completed. But when he could hardly lift his head a few weeks later, he knew something was wrong. His wife worked for Sony Records and had health insurance, so seeing a doctor at that time was a no-brainer.
“I didn’t pay for much,” he said. “I would [repay] what they took out of her check [for premiums]. It was pretty convenient.”
Then his doctor told him he had hepatitis C — a disease that hardly rang a bell to Kennard. At the time, healthcare professionals were also struggling to figure out how to deal with the hepatitis C virus, which eventually destroys the liver. They put Kennard on a ferocious year-long regimen of chemotherapy.
“Back then, the medicine was pretty primitive,” he said. “It didn’t work. I lost everything. Major depression is one of the side effects [of the treatment], and I wasn’t in the best of moods. My wife didn’t understand … . I was 120 pounds, and my hair looked like the nutty professor. I got kicked off gigs that were beneath my standard … it was because of the way I looked.”
Kennard felt so awful from the treatment and the depression that he could hardly play his guitar. Shortly after the 52-week round of treatment was over, he and his wife parted ways. “I thought ‘Hell, that’s it,’ ” he said. “Sometimes death is an easier way out.”
In part because of his mounting healthcare needs, Kennard and his wife stayed married even though they were separated. He got a gig at the 2500 Club on Belknap Street, and he credits the manager with providing him with at least a modest income during those troubled times.
By 2005, his viral load had climbed to the highest levels yet, and Kennard had to do something. He went in for another round of chemotherapy, paid for by his estranged wife’s insurance plan. It started to work, but then his life evaporated from beneath him once again.
When the second chemo round was over, Kennard and his wife officially divorced. He was left with no insurance, a permanent and potentially fatal health condition (hepatitis can go into remission but there’s no cure), and mounting medical bills for the post-treatment ultrasounds, checkups, and medications he received.
Kennard quickly found that sickness with insurance and sickness without it are two very different experiences. In remission from hepatitis but in a world of worry about his lack of insurance, Kennard turned to a support group. When he arrived, he found the gathering had been sponsored by a pharmaceutical company. “They didn’t care about people. They just wanted to make sure we were still using their product,” he said. “They had an ad that said to take your shot, then go play a round of golf, but hey, I didn’t belong to a country club.
“I’ve been a musician all my life … . There are so many people who work hard but can’t afford insurance,” he said. “We need to have programs where people can be treated with dignity and obtain some help.”
Since his second round of treatment ended four years ago, Kennard has avoided the doctor’s office because he can’t afford it. He hasn’t looked for insurance because he doesn’t believe he could find a plan that he could afford and that would welcome people with expensive pre-existing conditions.
He doesn’t like asking for help at a public hospital’s emergency room, either, but that’s what he ends up doing. “They make me feel like a vagabond,” he said about the way medical professionals look at him in the E.R. “It’s very degrading to go ask for help without any money … and they think it [the hepatitis] is self-induced because IV drug users get it. My hair’s long, and I’m a musician, so it’s the first thing they say, but that’s not the case at all for me.”
(For the record, Kennard believes he contracted the virus by sharing razors — not needles — with bandmates on tour, though he’ll never know for sure.)
Although the second, six-month round of chemotherapy knocked the hepatitis into remission, Kennard still needs regular blood work to keep tabs on the disease. Thanks to complications from the hepatitis and its treatment, Kennard has an imminent need for removal of his gallbladder. If it fails unexpectedly, he estimates emergency room treatment will run at least $10,000 — more than he has to spare.
“I’m kind of at a loss,” he said. “I don’t want my gallbladder to explode, but I can’t afford to go. I almost have to wait until something bad happens.” Hospitals are only required to treat uninsured emergency patients if they have life-threatening conditions, so Kennard and his gallbladder are waiting.
For all he’s experienced, Kennard is a believer in modern medicine and would like to receive its full benefits. He recently joined a hepatitis study for the free blood work. He’s hoping to keep the virus at bay while he promotes his upcoming CD, Matchbox. “It’s a different ballgame now,” he said about life without insurance, “but I have too much to do before I die.”
Like musicians, freelance journalists are often left out in the cold when it comes to health insurance. Although he has worked on two continents, photographer Pete Rearden isn’t an official employee of any organization, and he didn’t know what to do when he began suffering debilitating headaches. Last year, on a photo assignment involving narcoterrorists in Colombia, he learned great strategies for survival. But he never expected to have to fight for his life with his wallet, piles of papers, and the goodwill of medical professionals.
When he was growing up in Fort Worth, his mother was a registered nurse, and good healthcare was something Rearden and his family took for granted. Their idyllic family life fell to pieces in the 1990s, however. Both of Pete’s younger brothers died tragically. Shaken to his core, Pete moved away from Texas and then back, working on cars and as a freelance photographer and spending a lot of his time hanging out in area bars and coffee shops.
After breaking up with his fiancée in 2005, Rearden began freelancing around the country and in South America. Not having health insurance due to the nature of his employment wasn’t his top concern. “I like being my own boss,” he said, “but sometimes the money is terrible, and sometimes you have to make it stretch.”
The thought of a major medical malfunction did cross Rearden’s mind at times, as it probably does to every uninsured person, but he wasn’t losing sleep over it. “I don’t worry about my financial future,” he said. “It’s not like they can take me to prison.”
Last April, Rearden began experiencing bad headaches that would radiate from the back of his head. The severity of the aches kept increasing, and massive doses of over-the-counter painkillers brought no relief. Rearden, who had suffered from milder headaches for years, felt that something was terribly wrong.
“With my family history, eventually you become resigned to anything that happens. There is nothing shocking,” he said.
By a lucky twist of fate, Rearden met a radiologist while on assignment. In exchange for Rearden’s doing family portraits, the doctor charged the photographer only his $200 overhead in exchange for an MRI and a CAT scan of his head. The tests showed something growing on Rearden’s medulla oblongata, commonly referred to as the brain stem.
“If I hadn’t met him, I still wouldn’t know,” Rearden said.
Early detection of cancer helps only if it’s followed by early treatment, but that was going to be more of a problem. Although Rearden’s parents are fairly well off and probably would have helped pay the expenses, he didn’t have the heart to tell them about the mass in his head. They had already lost two sons, and he didn’t want them to worry about losing another.
His radiologist recommended an oncologist, whom Rearden visited immediately. After more MRIs, blood tests, and an investigative procedure, the oncologist told Rearden that the mass was precancerous and that he needed radiation therapy.
“That was where the debt problems started,” he said. “All that was on credit. For the surgery and 33 visits just to identify what it was, that alone was $10,000.
“It also changed the level of care,” he said. “Once the oncologist found out I was on credit, my appointments were not as prompt. It felt like they wanted to put the easiest Band-Aid on it and be done with me.”
Rearden hadn’t even started to pay the thousands he owed the oncologist, but he needed several rounds of radiation therapy, each involving multiple treatments. In May he found a kindhearted doctor whom he doesn’t want to name, for fear of legal repercussions, and this medical professional unobtrusively added Rearden’s name to the chemo list “like I belonged there,” he said. “He did it [the gamma-knife radiation treatments] for free. I disappeared from the system.”
Since last summer, Rearden has paid off nearly $3,000 of the original debt, but with interest he still owes around $7,500, not to mention the cost of future care. “I’ve had to sell more stuff and camera gear than I care to mention,” he said. “I sold the rights to [huge quantities of] photos, but I’m lucky that I had enough to sell to keep my head above water.”
Rearden hopes the growth will be reduced to a harmless “charred chunk” in the back of his head. “I am optimistic now,” he said. He still needs more radiation treatment, and he’s planning on undergoing it soon.
As much as asking for care without the means to pay for it hurts Rearden’s pride, he’s still happy he made the decision to find out the cause of his headaches. “If I hadn’t done anything, I’d probably be dead in another year or two,” he said.
The passage of the healthcare bill is something Rearden had hoped for even before he fell ill. “I hope we get socialized medicine,” he said before the bill passed. “There will be less hustling and more attentive care. Other countries get health insurance for free, and if I have to pay extra taxes, what’s the problem?”
Socialized medicine sounds great to Alicia Griffin these days. She grew up in a nice house in Arlington with well-off parents. She had good coverage of her own and every reason to expect a healthy future.
After working in fashion retail, as a bartender, and in her mother’s gift basket business, Alicia was temporarily unemployed when she discovered her surprise pregnancy. She and her former husband Scott Vernon, a talented local musician with limited financial resources, went to the Texas Health and Human Services Commission office to get food stamps to help them through the pregnancy and delivery. An employee at the office suggested she apply for temporary Medicaid benefits. Bright and capable, Griffin expected to plunge back into work after her baby’s arrival.
During the pregnancy, however, those expectations took a strange turn. “At the seven-month visit, they noticed his bladder was very large, but they said they wouldn’t know more until after he was born … . I didn’t think it’d be that big of a deal,” Griffin said.
On the morning of Feb. 28, 2006, Griffin woke to labor cramps. Her doctor sent her straight to Harris Methodist Hospital. “I was crying, excited,” she said. “I was going to have my baby today.”
Doctors delivered Escher by emergency C-section and whisked him straight to the neonatal intensive care unit. His problems were worse than the doctors had anticipated. Two weeks later, he was in a specialized care unit at Cook Children’s Hospital.
“When they tried to feed him, he threw it right back up,” Griffin said. “The doctors were telling me all kinds of things. They had never seen anything like this before. The nurses were saying they couldn’t feed him, so he was going to die.”
As a temporary measure, surgeons installed what is called a G-button in Escher’s stomach so medicines could be administered directly to his digestive system. They tried feeding him intravenously. He had several more surgeries. Escher stayed in the NICU for more than three months, barely clinging to life.
With an infant perched precariously between this world and the next, Griffin didn’t have time or energy to worry about how she was going to pay for Escher’s care. Medicaid coordinators took care of the paperwork for her. “There was no talk of insurance. I never had to fill anything out. It was automatically taken care of,” she said.
Even with the best efforts of the NICU and all his doctors, Escher did not improve. “The head nurse said I should probably be thinking about hospice,” Griffin remembered. But she and her mother would not give up on Escher so easily.
To have a fighting chance, Escher needed a new liver, at the very least. With the help of a transplant coordinator at Cook’s, Alicia’s mother Barbara searched the internet to find the best pediatric transplant surgeon. The team at Cook’s made the process as easy as possible for the Griffins.
With a form of socialized medicine working to save her child’s life, Alicia Griffin didn’t have to spend her waking hours tracking down private insurance coordinators. Having the support of the Medicaid system made the process infinitely easier when her level of stress couldn’t be tested much further. “My son wouldn’t be alive today if it weren’t for the Medicaid coverage he got,” she said.
Alicia and her mother flew to Miami so Dr. Tomoaki Cato could transplant six new organs, which had once belonged to a baby named Colby, into Escher on April 1, 2007. With a new stomach, liver, spleen, large intestine, small intestine, and pancreas, Escher spent three and a half months recuperating in Miami. “No one ever mentioned the cost of the transplant,” she said. Later, they found that the federal government kicked in more than $3 million.
It’s been a long journey for Escher — he’s spent as much of his life in a hospital as out. He’s still on 11 daily medications and visits doctors regularly to monitor the function of his new organs, but he also plays, laughs, smiles, and does all the things a young boy should do.
Had Obama’s healthcare package not passed, Alicia’s entire working future would have been shaped by insurance considerations. “There’s probably no way I could afford to pay for his medicines and doctors’ visits,” she said.
She has been fearful of looking for a new job and, consequently, a new insurance plan that might cover her and Escher.
Tim Becks, an independent insurance agent who provides a group plan for the full-time employees at Fort Worth Weekly, finds endless frustration in trying to locate insurance companies to cover people like Escher with serious pre-existing medical conditions. “It’s like pulling teeth,” he said.
Several weeks ago, Escher went into mild rejection of his new organs, and the Griffins returned to Miami for specialized care. Escher is back at home now but being carefully monitored. Barbara Griffin has sky-high blood pressure as a result of the endless stress and may soon be in the hospital herself.
“It’s been a long ride,” Alicia said. She knows that more challenges await but feels confident that she, her mother, and Escher will be able to meet them.
As local rock icon Michael “Mace” Maben and his wife Suzie can attest, having health insurance doesn’t always make sickness an easy burden to bear.
“Either way you go, it’s devastating,” said Suzie. She works as a collections manager for a local law firm that covers its employees with a Blue Cross Blue Shield healthcare plan. When Mace was diagnosed with small cell lung cancer last September, Suzie knew they’d have to pay some expenses themselves, but she didn’t realize those costs would be so high that she and her husband would be left struggling to pay for basic necessities.
By all accounts, Mace is lucky to be alive. By the time most people are diagnosed with this form of cancer, it is too late. Thanks in part to insurance coverage that includes preventative visits, he was diagnosed early enough that doctors could treat the disease. After concurrent chemotherapy and radiation treatment, four hospitalizations, and the loss of 90 pounds, Mace is recovering at home while eating his way back to health.
Mace is a career musician, but these days he can’t play guitar due to neuropathy, or a tingling insensitivity in his fingers. Doctors suspect it’s a side effect of the chemotherapy and radiation, and they don’t know when or if the tingling will disappear.
For now, Suzie is working full time, taking care of her husband full time, and navigating through the confusing mess that is healthcare coverage. Blue Cross Blue Shield recently informed her that her premiums would be going up by 35 percent, effective immediately. Beyond that, she has to come up with co-payments every time her husband sees one of his numerous doctors and the full cost of many items, like medical equipment and nutritional supplements.
Those expenses, which thus far have added up to more than $10,000, have caused the Mabens to start looking for ways to cut even their most basic expenses, like food and electricity. The 35 percent hike in insurance premiums is also painful — but clearly not one of the things they can do without. “Once they have you over the barrel,” she said, “it’s like shooting fish.” The mixed metaphor seems particularly apt.
To share the burden of their ordeal, Suzie and Mace Maben have relied heavily on their circle of friends in the Fort Worth music community. During Mace’s illness and recovery, she would have potluck dinners every Sunday so Mace wouldn’t feel isolated.
Friends have held one benefit at the Keys Lounge to offset the Mabens’ expenses and will have another this Sunday at the same location. At the benefit, Mace’s old band, Texas, will release a 1973 recording from a live show at the original Spencer’s Corner club on University Drive. Before Mace’s sickness, the band decided to revisit the good old days by mixing and mastering the old live recording. Although the music is stellar, the gathering itself is equally special. Suffering shared is easier to handle.
“I couldn’t have done it without them,” Suzie Maben said about her friends. “They’ve been pulling for us and rallying around us. It’s nice to know they still care.”
The healthcare reform bill signed into law in March looks like a light at the end of the tunnel for many uninsured folks, proof that their government is interested in helping those who need it most and that healthcare is not just a privilege of the well-off.
Others, mostly those with access to good healthcare, are up in arms over the bill. In Texas, where two-thirds of the population does not have full health coverage, pre-passage opposition to the bill was estimated at 87 percent.
America’s medical establishment may work gloriously for some, but for many others it is an embarrassment. Though the United States spends more per capita than any other country on healthcare, the World Health Organization ranks it 37th among industrialized nations in the overall quality of its healthcare system.
There are still many unknowns about how the bill will work and how it will affect tax rates. But it will eventually mandate the purchase of insurance for the multitudes of uninsured musicians and other independent workers.
If his new album doesn’t bring in the big money, Kennard will be eligible for a subsidized plan. He’s a pacifist and doesn’t understand the hatred being directed at Obama over the bill. “It’s easy for people to talk about when they have access [to healthcare],” he said. “But there are so many people who need help now.”
Rearden needs help now to pay for the next round of radiation to attack the tumor in his head — the four-year wait until subsidized coverage kicks in may be too long for him. Assuming the best, he will eventually be required to pay for his health insurance, but if he chooses to remain in the low-paying industry of freelance journalism, Rearden will be eligible for credits subsidized by taxes, and to him, that is part of the solution.
However, he doesn’t expect “the system” to take care of his health problems. He assumes responsibility for the lifestyle choices he made in the past. While smoking and drinking may or may not have helped cause the growth on his brain stem, the illness did inspire the 36-year-old to take a long, hard look at his life. “I was kind of resigned to it. I knew eventually something would catch up with me. I’ve done a lot of stupid things,” he said.
Now his attitude is one of cautious optimism tempered with some serious reality. “We all need to re-evaluate what we’re doing with our lives and take responsibility for that,” he said.
Some, like Escher Griffin, are not responsible for their woes. Children will be immediate beneficiaries of the legislation: One of its provisions is that, effective immediately, insurers cannot deny coverage to children because of pre-existing conditions.
“It’s kind of a load off,” Alicia said last week, “but I always thought he’d be covered. I’d find a way.”
In September, Suzie Maben will be able to rest a little easier. That’s when another provision takes effect, prohibiting insurance companies from dropping people due to illness. She’s worried, however, that companies will begin “mass cancellations” of the policies of people who are costing them money.
While she struggles to keep afloat, the five insurance companies, a group that includes Blue Cross Blue Shield, posted $12.2 billion in profit last year. “I don’t see how they can get away with this,” she said.
She doesn’t expect the new law to fix all the things wrong with the American healthcare system. But, “At least it’s something,” she said.
Caroline Collier is a local freelance writer. She can be reached at firstname.lastname@example.org. .