A Matter of Life & Death: For Russ Barron, health care reform can’t come soon enough By Robert Downes Russ Barron has literally died five times during the course of his life, with his heart coming to a complete stop, -- a terrifying experience that includes the realization that he may have only minutes to live. Once, his heart quit beating at a traffic light in Traverse City. “I was sitting at a light on South Airport Road and knew that something bad was going to happen,” he recalls. “I felt the blood rushing from my head and knew that I was going to die right there at my steering wheel.” In desperation, Russ opened his car door and threw himself into traffic, hoping that someone would stop and help him. “I threw myself out in the street and my heart started up again,” he says. “I went to work the next day, but I didn’t look so good.” Barron, 52, has lived on the edge of mortality his entire life. He’s had seven strokes, three open heart surgeries, two heart valve replacements and 15 pacemaker surgeries. He’s been a patient at Munson Medical Center five times this year alone for complications related to his pacemaker, as well as a minor stroke. Perhaps an ordinary person would crumble under the terrifying pressure of living in Barron’s shoes, and yet Russ has dozens of friends (including this writer) who find him to be amazingly optimistic, fun-loving and thoughtful. Not to mention courageous. Beyond the unpredictability of his heart, there’s only one thing he fears: that a fractured set of rules will condemn him to death at the hands of the State and Federal health care bureaucracy. Currently on full disability, Barron is faced with the prospect of surviving 18 months without any health care coverage between the time he loses his state Medicaid benefits and the time he qualifies for Medicare under Social Security. Because of his pre-existing heart condition, it’s impossible for him to obtain health insurance and he’s already spent everything he owns on his health bills -- at least $1 million, including a lifetime of savings and the sale of his home -- everything.
BORN BLUE Barron provides a face for the millions of uninsured but hard-working and responsible Americans who need health care reform. Despite decades of heart problems and complications, Barron has had successful careers in several fields and has been a productive member of society his entire life. “It’s difficult going from wearing a shirt and tie and being a successful professional for 30 years to all of a sudden wondering how you’re going to get out of bed this week,” he says. His problems began the day of his birth when he was literally born blue. “I have a really rare heart condition called Epstein’s Anomaly,” Barron says. “There may be only 30 of us or so in the eastern United States who have this disease.” Growing up in Linden, outside Flint, Barron spent most of his childhood feeling faint, with a blue tint to his lips and skin and unable to play school sports. “Epstein’s Anomaly is real simple,” he says. “The right side of my heart is upside down and the valves inside are also upside down, including my heart’s electrical system. It’s kind of like having your house wired by someone who doesn’t know anything about electricity and nothing works.” When he was 11, a doctor noticed a heart murmur which led to the discovery that a valve in Barron’s heart wasn’t closing properly. “I lived with it,” he says, but he wasn’t expected to live long: doctors gave him until the age of 14. The Barron family moved to Lake Havasu City in Arizona when he was in his teens, where he had the first of nine pacemakers installed in his chest in 1980. Today, his chest also packs an automatic defibrillator which gives his heart a burst of electricity, if and when it quits beating. At the age of 24, Barron became the first successful patient in the world to have what is called a Starr-Edwards valve installed in his heart at a hospital in Portland, Oregon. This ‘ball & cage’ artificial valve has the distinction of being the oldest continuously-operating heart valve of its kind in the world. “You can hear a lot of clippety-clop in my chest,” Barron says.
WORK ETHIC Despite his health problems, Barron created a successful career. Following in his father’s footsteps, he became a contractor, building hundreds of homes in the Lake Havasu area. “By the time I was 30, I was making over $50,000 a year, which was rare back in the ‘80s,” he says, adding that for a number of years, his earnings ranged into the six figures. His health problems led to an interest in medicine and he went on to become a respiratory therapist in the Pacific Northwest. Eventually, he settled back in Michigan, becoming a marketing and operations manager for DME, a chain of local pharmacies. He also managed a sleep lab in Traverse City before being laid off -- a situation which ultimately ended his health insurance benefits, since the COBRA extension of such runs only 18 months. Through the years, Barron saw his savings whittled away by co-pays, hospital stays, home nursing care and shortfalls in what his Blue Cross-Blue Shield insurance would pay. “Not all doctors accept Blue Cross-Blue Shield,” he says, making the point that even persons with health insurance can pile up bills. “They want the full cost of a surgery or a procedure, so you have to pay the difference on what the doctor receives from Blue Cross. If the insurer reimburses $11,000, but the doctor wants $16,000, you have to pay the remaining $5,000.” In 2003, Barron spent 21 days in the hospital recovering from the complications of a difficult surgery. “When I got out I couldn’t work for four months and there were all of the co-pays and medical bills to worry about,” he says. Then there are the pharmacy bills: Barron takes 12 pills each morning, 6 pills each night, and wears a pain patch continually. It adds up. Currently, more than 60% of all personal bankruptcies in America spring from medical causes, often even among persons who have health insurance, according to a study in the American Medical Journal. Barron can confirm that hardship;. Today, he lives with his fiancé Alice Hauser at her home in Suttons Bay. They’ve had to delay getting married because of the risk that health care costs might mean to her own property. “I ended up having to spend all of my savings -- my IRAs and my 401k -- everything I had just to have my surgeries and stay alive.”
CATCH 22 For years he struggled to avoid going on disability, despite the urging of his physician. “I want to be a productive member of society, but my society is smaller now -- it’s my friends and clubs,” he says, adding that he was fortunate to receive state disability benefits and Medicaid within a month of applying. Despite the help and consideration of many doctors, pharmacists and state health employees to whom Barron is grateful, in some ways the health care system is rigged against him -- even to the point of threatening his life. Take COBRA benefits from his former employer, for instance. Under the law, Barron could pay for his COBRA insurance premiums out of his own pocket, but only for a period of up to 18 months. “I don’t know why the health care system won’t let you just carry on your COBRA benefits, but they force you to drop your insurance,” he says. That means that even if Barron could afford private insurance at a new, much higher rate, he’d be denied coverage because of his pre-existing condition. Then there is the impending shortfall in his state and federal coverage: Barron has been told by the State that he’ll lose his Medicaid if he goes on Social Security because he’ll be making too much money to qualify for Michigan’s health program for persons on low incomes. But under federal rules, he’ll have to wait two years (or 18 months beyond the fall-off of his Medicaid) to receive Medicare while he’s on Social Security. It’s a potentially fatal Catch 22. “Under the federal system, they say they’ll pay you Social Security, but you must wait two years to get on Medicare. Why? Whoever made up that rule really wasn’t thinking because by that point, you’ve got all of these health conditions. Why do I have to wait two years? What is the logic behind that? Are they waiting for you to die? “Now what do I do? I’ve sold all of my assets and I’m down to the bare bones.”
ANXIETY OVER THE FUTURE Barron’s health problems are rubbed raw by the anxiety he feels over his impending lack of medical coverage. “This last month was the first time I haven’t had health coverage in over 30 years and it was quite a shock,” he says, referring to the fall-off of his COBRA benefits. “It was really a depressing day. I woke up and thought that I don’t have insurance, and that’s a scary thing.” Like many Americans who’ve lost their benefits, he began hoarding pills and cutting dosages. The confirmation of his Medicaid benefits was a godsend, but he wonders how he’ll bridge the 18-month gap to Medicare. The bitter irony is that unlike the Tea Party stereotypes condemning ‘moochers’ trying to receive ‘free’ health care reform for nothing, Barron has contributed heavily to Social Security and Medicare all his life and simply wants a chance to live on what he’s put in the system. “I have no quarrels that you should spend all you own before getting charity or help from the state,” Barron says. But he also feels that he should be able to receive what is his due as a contributing member of society. “Now, knowing that I’m a man who’s worked all of my life and has done well and has had to sell everything I own, including all of my retirement money just to get to this point in disability, all I want is to try to live a normal life on my own Social Security.”
HELPING HANDS & COLD SHOULDERS “A lot of people in the community have offered to help me out,” he says. “Loads of people and friends. I have a wonderful support system in the community and at Munson and from the pharmacy programs at Target and Walmart. At the end of the day, I’m blessed, but I’d like to see a change in our country for the right reasons and see all Americans have health care coverage. We’re supposed to be the greatest nation in the world, yet we can’t provide our people with health care?” And while there have been angels in his life, there have also been thoughtless individuals. Barron has been dismayed by persons who’ve badmouthed the efforts to reform the nation’s health care system without realizing that they’re condemning him to death. If they only knew. “Anyone can have a stroke tomorrow and within two to four years go through everything they own and be where I am now with no insurance,” he says. “A lot of people are against health care reform, but they’re just in their own world and don’t understand that they could be in my world in a moment’s notice.”
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