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"Our safety net is broken. People are suffering and dying due to lack of health insurance coverage and lack of access to life-extending treatments. As a society we are turning our backs on these people. Whether our lack of care is due to ignorance, or indifference, the suffering we don't see is still very real. To make a better world we need to have vision, we need to see the suffering and tend to it."- Sharon Lee

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Photo by David Eulitt

Stuck with a damaged lung and declining*

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Jacob Russum of Kansas City, Kan., takes 35 prescriptions and supplements a day for his ongoing medical conditions. He also keeps a folder of medical bills he can’t pay. As best as Jacob Russum can recall, he’s been to hospital emergency rooms at least 75 times in the past 15 years. He usually comes in coughing up blood, a pint or more at a time. Often, he has pneumonia and lung infections. He’s been hospitalized overnight or longer about a dozen times; twice he’s woken up and found himself on life support. He’s afraid now to go to sleep at night.* Russum has an underdeveloped left lung with blood vessels prone to bleeding, a condition he’s had since childhood. The lung has collapsed and filled with fluid. His right lung does virtually all the work.*

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“What he really needs is definitive surgery to remove the damaged organ,” said Sharon Lee, who runs Southwest Boulevard Family Health Care. *Removing Russum’s left lung would stop the bleeds and infections. It also would open room in his chest for his healthy right lung to expand, so he wouldn’t be out of breath as often. “His other lung would be able to compensate better; the damaged lung still occupies space.”

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But that’s elective surgery. The cost: about $100,000. It’s not something that’s likely to be done through an emergency room.

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Russum can’t afford insurance — even if he could, it’s unlikely his lung problem would be covered — and he hasn’t been able to get on Medicaid. “Without insurance, it’s pointless to even ask for the operation,” he said.*So Russum, 33, lurches from crisis to crisis, going to emergency rooms and racking up tens of thousands of dollars in bills he can’t pay. An ER visit in May: $789. Another in June: $399 for the hospital and $345 for the doctors. He just stuffs these bills away unopened in plastic storage tubs with all the other unpaid bills — $7,118 for a hospital stay in 2007, a letter from a collection agency for a $2,030 bill back in 2000, and many more.

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Russum hasn’t been able to work for nine years. He and his wife, Christal, rely on her part-time job at Walmart and help from his family.It’s been rough for a man who had been used to doing physical labor since high school. “I was raised in a family where the man takes care of the woman and kids,” he said. *His condition first showed up when he was in fourth grade and he coughed up blood on the way home from school. He was tested for tuberculosis, leukemia and cystic fibrosis, among other illnesses, before he was diagnosed at age 18 with a rare condition called Swyer-James syndrome.

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But by then, Russum was out of school and laying carpet for a living even as his condition worsened. In 1997, he coughed up so much blood at the University of Kansas Hospital that he needed a transfusion and an emergency operation to close off blood vessels in his lung.

Russum went back to work, but he was fired after he coughed up blood and passed out in a customer’s yard. Russum started his own carpet-laying business; he even had health insurance for himself and his employees, although his lung condition wasn’t covered. But by 2003, the physical work was just too exhausting. Walking the six steps to his apartment leaves him out of breath. Unable to be active, Russum has put on weight and become diabetic.*“The longer it goes on the more debilitated he becomes,” Lee said. *

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So Russum stays in his apartment, taking medications and waiting for the next bleed that sends him to the ER.“You can live with that dead lung tissue in you,” he said, “but it’s not that great.” .*

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| Alan Bavley KC StarPosted on Sat, Jul. 28, 2012 10:53 PM  

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Ms. T | For lack of simple diabetes care, a double transplant .
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Not too many people know that T’s kidneys failed, and the 29-year-old Kansas City, Kan., woman wants to keep it that way. She’s always been independent and self-sufficient and doesn’t want others to view her as disabled because she has been on dialysis.
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But self-reliance can go only so far. Some things only money can buy, like the diabetes supplies T needs to survive. When she couldn’t afford them, her health took a dive.
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T has had type 1 diabetes since she was 11. That’s the kind of diabetes caused by a childhood autoimmune disorder, rather than by adult obesity. T’s diabetes requires regular shots of insulin and frequent blood tests to make sure her sugar levels don’t spike too high or drop too low. All her supplies — the blood test strips, the insulin, the syringes — were covered by her mother’s insurance when T was a child. But T turned 18 long before the Affordable Care Act made it possible for adult children to stay on their parents’ health plans.
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T entered junior college and eventually graduated with a marketing degree. She has worked low-paying jobs at gas stations and restaurants, earning barely enough to get by. Diabetes supplies cost more than $400 per month. “I was never able to purchase everything I needed altogether,” T said. “There was no way possible.” She tested her blood-sugar levels less often than she should have. She’d stretch a month’s supply of insulin to six weeks. Cheap fast food replaced the high-quality diet that diabetics must maintain. “Everything kind of slacked off,” she said. “It was risky.” .T had trouble getting food down. She lost weight. Her blood-sugar levels were dangerously high. By the time she was 24, T’s diabetes was causing arteries in the retina of her right eye to bleed. A surgeon donated the procedure to correct that problem. But T’s health continued to worsen.
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Several years ago, she applied for Medicaid and was turned down. “I guess they didn’t think I was too bad off because I worked,” she said.Even now, working two part-time jobs, T makes about $13,000 per year. .By the end of 2010, she was very sick. She felt exhausted. Her back ached. T started seeing Sharon Lee at Southwest Boulevard Family Health Care and was soon diagnosed with kidney failure. “It was completely preventable,” Lee said. “Absolutely, if it’s appropriately treated. We see people in their 50s with the same kind of diabetes who aren’t in organ failure.”
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End-stage renal disease, as doctors call it, generally is covered by the federal Medicare program, which is now paying for most of T’s care. Researchers have calculated the total medical costs of a person with Type 1 diabetes typically run about $9,900 per year. The medical costs of a person receiving the kind of dialysis T has been getting average nearly $130,000. About a week ago, she received a kidney and pancreas transplant. Generally, the price tag on that double transplant is more than $400,000.
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T is acutely aware of the irony. .“When things were bad, I asked for help. They were looking at me like I wanted to take advantage of the system. I just wanted to survive,” she said. Now, things are looking up, but at a tremendous cost to her and the health care system. “Neither of us won. I think the system needs to prioritize. Without health care, everything crumbles. We’re really not saving nothing if health care isn’t first on the list.”
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| Alan Bavley KC StarPosted on Sat, Jul. 28, 2012 10:57 PM


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Drive to expand Medicaid is stalled. But the safety net has some gaping holes, and political uncertainties could make them even bigger.
 
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By ALAN BAVLEY and ERIC ADLERThe Kansas City Star
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Trina Norwood suffers from severe fibroids that cause "crying pain." She is a patient of Sharon Lee at Southwest Boulevard Family Health Care in Kansas City, Kan..Patients with cancer, unstable heart disease, uncontrolled diabetes — they all show up at Southwest Boulevard Family Health Care looking for help. Their problems are critical. They need tests, surgery, specialized treatments. There’s just so much that Sharon Lee, the family practice doctor who runs this Kansas City, Kan., safety-net clinic, can do for them. And sometimes it’s not enough. Her patients end up disabled, on organ transplant lists or suffering chronic pain because the help wasn’t there.
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“Everybody believes our society is taking care of people in dire straits, and it’s not,” Lee said..That’s why she was thrilled that the Affordable Care Act was going to expand Medicaid, the government health insurance program for the poor, in 2014 to cover an additional 16 million people nationwide.The ACA, “Obamacare” to its detractors, calls for offering free Medicaid coverage to almost all adults with a household income of 133 percent of the federal poverty level or less.
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In Kansas, Missouri and most other states now, few non-elderly adults qualify for Medicaid unless they have children living at home. With expansion, a single adult with an income of as much as about $15,000 would be eligible. But last month, the U.S. Supreme Court’s ruling on the ACA upset that plan. While the court left intact the law’s demand that many people buy health insurance or face financial penalties, it overturned the mandate that states expand their Medicaid programs. So it’s up to each state whether it buys in to the new benefits.
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Lee estimated that as many as a fourth of her clinic’s more than 5,000 patients would be newly qualified if Medicaid eligibility expanded. They would gain greater access to hospitals, imaging centers and specialists that now are often out of reach.Altogether, about 141,000 uninsured adults in Kansas and 351,000 in Missouri would be newly eligible for Medicaid, according to the Urban Institute, a Washington, D.C., think tank.
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But in Kansas and Missouri, Medicaid expansion is in doubt. There are serious concerns about the costs and complexity of a larger Medicaid, as well as ideological opposition to any government growth. Kan. Gov. Sam Brownback, a Republican, has called the state’s role in implementing the ACA a political issue that voters will settle. “He will wait until after the November elections before making any decisions related to Obamacare,” said spokeswoman Sherriene Jones-Sontag. Missouri Gov. Jay Nixon, a Democrat, remains noncommittal.Nixon “is always looking for ways to make health care more affordable for Missouri families, but we must do so in a fiscally responsible way,” said his spokesman, Scott Holste. He said the governor “is committed to working with legislators, health care providers, other stakeholders and regular Missourians to determine the best fit for our state.”
 
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Some Republican governors already have lined up squarely against Medicaid expansion.In a letter this month to Health and Human Services Secretary Kathleen Sebelius, Texas Gov. Rick Perry said it would “simply enlarge a broken system that is already financially unsustainable.”
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Medicaid expansion is intended to be one of the tent poles holding up the Affordable Care Act. People newly eligible for Medicaid were to account for about half of all the uninsured who were expected to gain insurance coverage through the health care law. Medicaid programs are administered by states, but the federal government makes many of the rules and picks up half or more of the costs. In Kansas, the federal share of the bill is 59 percent; in Missouri, it’s 63 percent.
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Since it was enacted in 1965, Medicaid has focused on coverage of people with low incomes, but only in certain categories: pregnant women, children and their parents, the elderly and the disabled. Other poor adults are left out of most states’ programs. As health care costs have risen, Medicaid has taken up a growing and burdensome share of state budgets.
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Medicaid expansion was designed to be less onerous: For the first three years, the federal government will pay the full cost of the newly eligible recipients. The federal share then will taper gradually until 2020, to 90 percent, where it will stay.The first six years of Medicaid expansion would cost Kansas $166 million, but bring in an additional $3.5 billion in federal money, according to the Kaiser Commission on Medicaid and the Uninsured. Missouri would spend an extra $431 million and receive $8.4 billion more. But costs could be considerably higher if more people sign up than expected, or if people who had been eligible all along decide it’s the right time to apply.
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States are worried.“I think there is a lot of concern about the bottom line. What is the bottom line and what is the real financial outlook?” said Suzanne Schrandt, a policy analyst with the Kansas Health Institute in Topeka.Yes, the federal match is not supposed to drop below 90 percent, Schrandt said, but “what if, because of the budget situation, that is not what happens?” But it also may be hard for states to walk away when there is so much federal money on the table, said Ryan Barker, director of heath policy with the Missouri Foundation for Health in St. Louis.“In the basic equation, it would take more state spending, but part of the argument is having $8.4 billion in federal money. That’s not just sitting there. It’s going to doctors and hospitals and clinics, and that generates economic activity.”
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There are other reasons for states to go along with Medicaid expansion, Barker said.The ACA will offer tax credits to people with low and moderate incomes to buy private insurance. But the law doesn’t provide the subsidies to anyone with an income less than the federal poverty level; it assumes that they will be covered by the larger Medicaid programs. If a state doesn’t expand Medicaid, these very poor people will be shut out.
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The ACA also assumes that with millions more people insured, hospitals will no longer need all the subsidies they receive through Medicare to cover the costs of uninsured patients. Most of these subsidies are scheduled to go away in 2014. If Medicaid isn’t expanded to cover the uninsured, “it really puts hospitals in a financial bind,” Barker said. They can’t stop treating uninsured emergency patients, so they will try negotiating higher payments from private insurance plans to cover their losses.“All of this is connected, and it’s a domino effect. It jeopardizes the financial stability of hospitals; it jeopardizes price stability of private insurance,” Barker said.
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Stan Dorn, a senior fellow at the nonpartisan Urban Institute, thinks much of the opposition to Medicaid expansion right now may be political posturing by governors looking for concessions from Washington.“There are some people who think that, after the November election, if the president gets re-elected, or Democrats take (full control) over the Senate, states will negotiate for the best deal they can get from the federal government,” Dorn said. “I have heard some say this is about bargaining leverage. Fight it now; get a lever later.”
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Sharon Lee has to believe that opposition to Medicaid expansion comes from a lack of awareness of the health care problems faced by people without insurance rather than mean-spiritedness.“Only when it happens to you or someone close to you do you go, “Wow, now I understand,’ ” she said. “I hope our politicians rise to the occasion. They have to.”
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Alan Bavley KC StarPosted on Sat, Jul. 28, 2012 10:45 PM

 


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Spine surgery delayed, now he’s disabled

A spinal condition brought an end to Gary Chowning’s 16 years as a sign fabricator.
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Gary Chowning was the go-to guy anytime there was heavy lifting to be done at the sign fabrication shop where he worked. Helping unload 300-pound crates off trucks was just part of the job. That vital strongman is gone now. Chowning, 55, can’t be up and about for more than 20 minutes before he needs to rest. His left foot drags, and he walks with a limp. His left hand has a weak grip, and he can’t raise his left arm above his head. Instead of working, Chowning sits in his modest Kansas City, Kan., home and collects disability.
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Chowning’s spinal cord was damaged by a condition called spinal stenosis. The spinal column in his neck narrowed and put pressure on the spinal cord, causing it to swell. It can be caused by arthritis in the spine, bulging disks or a back injury.
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Emergency surgery prevented Chowning from being paralyzed, but Sharon Lee of Southwest Boulevard Family Health Care thinks Chowning may have been spared disability if he had been diagnosed and treated sooner. That would have happened if Chowning had been insured. But Chowning dropped insurance through his employer in 2007. The $40-a-week premium had become a financial drain. “It was a choice,” he said. “I couldn’t afford to have insurance and pay all the bills. I couldn’t buy groceries.”
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The first sign that Chowning had a problem showed up in March 2008.“My boss said, ‘I think you may need to get yourself checked because you’re dragging your foot,’ ” Chowning recalled. His boss thought he may have suffered a stroke. “I didn’t think about it.”But Chowning went steadily downhill. His back and neck hurt badly. He’d come home from work and go straight to bed. He tried getting help at a hospital emergency room. A scan showed no signs of a stroke. They prescribed him pain pills and told him to see a doctor. By June 2008, Chowning had to quit his job. “It was a snowballing effect. I kept getting worse and worse,” he said. “I was getting to the point where I could hardly walk. I couldn’t even use my left hand.” In July, Chowning found Southwest Boulevard Family Health Care on the Internet. The clinic helped him apply for Medicaid; he was quickly rejected.
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Meanwhile, Lee began the frustrating process of finding someplace that would do the MRI scan needed to diagnose Chowning’s condition. Weeks passed. At the end of August, Chowning got the scan. Three of his brothers had to carry him to the car to drive him to the imaging clinic. The radiologist who read the scan called Lee immediately with a warning: Chowning could die or be paralyzed for life if he didn’t get surgery immediately.
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With the urgent evidence of the MRI, Lee sent Chowning to KU Hospital. “If I could get him there and they saw the level of disease, they couldn’t let him out (without surgery). The only way to stabilize him was to do the surgery on his neck,” she said. Chowning said he was very lucky to get the surgery. Otherwise, “I would be in a nursing home being taken care of.” But he also thinks he wouldn’t be disabled if he had been covered by insurance. Lee agreed.“If insured, he would have gotten an MRI weeks earlier and they would have seen the swelling. The potential is he could have done well.”
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Chowning said he would go back to work if he could. That doesn’t seem likely. “I can’t do what I used to,” he said. “I feel frustrated at times. I hate to ask someone to do something I should do myself.”
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