The Mysterious Case of Mrs. V

After months of testing and misdiagnoses, a 38-year-old mother of two is told she is suffering from a rare illness. That’s just part of her medical nightmare.

WE in medicine want to think of ­hospitals as places of giving, of serving, of healing, and of hope. But in the final analysis, hospitals represent exactly what we don’t want for ourselves and our loved ones. They represent what we fear most. They represent sickness. More than that, hospitals represent our ultimate fear, that thing we innately struggle to avoid with our last ounce of strength and our final breath: they represent death.

I am an obstetrician. Our Dallas hospital has a building devoted solely to the care of women and infants. It is, for the most part, a modern, brightly lit, cheerful place to work. It doesn’t have the feel of the main hospital adjacent to it on campus. It doesn’t have that fear of death, perhaps because it deals so intimately with the beginning of life and not the end. For the most part, people come into our building knowing they will come out again, often with a new addition to their family.

Six years ago, I was thinking about this as I turned off the main hospital corridor and headed into the isolated cul-de-sac of rooms beyond the heavy double wooden doors marked “4 ICU No Unauthorized Admittance.” I had called ahead and knew where to find my longtime patient and friend, whom I’ll call V. I opened the sliding door to her glass-enclosed room. When V. turned and looked at me, I used every ounce of composure to put on a smile, step to her side, and pick up one of her lifeless hands in my own. Her usually ebullient father, face haggard and lined with concern, pushed off of the far wall and offered his hand across the bed. Her mother sat in a chair by the monitors, a handkerchief in her hand, little comfort for her red-rimmed, tired eyes. They told me the story.

V. was an energetic, fit, 38-year-old mother of two little boys, both of whom I had delivered. An architect, an avid exerciser, deeply involved in her children’s school and outside activities, V. was the quintessential North Dallas soccer mom. 

One night, five weeks before I walked into her ICU room, she became nauseous. During the next 24 hours, with nothing on her stomach but acid, her vomiting turned to almost continuous dry heaves. The surreal horror of an undiagnosed illness began with what everyone thought was the flu and turned into more than four weeks of near nonstop nausea and vomiting. After multiple trips to the emergency room for IV hydration and a consult with a gastroenterologist, V. was hospitalized at Presbyterian Dallas for extensive testing. Everything was negative—the blood work, the X-rays, the sonograms, even the endoscopy.

Three weeks into this ordeal, still at the hospital, she was taking a walk with a friend, who noticed V.’s eyes twitching. This snapping back and forth of the eyes is called nystagmus and can be an indicator of various neurological problems, from inner ear to brain stem. Within hours, V. began frothing at the mouth, and only in hindsight did she realize that it was the paralysis of her tongue making it difficult to swallow her own saliva. The oral paralysis began distorting her speech the same day.

Dr. C., the patient’s primary neurologist at the time, transferred V. to the ICU that same afternoon, and V. submitted to yet more tests, including a lumbar puncture for studies on her spinal fluid. Massive doses of intravenous steroids were begun without knowing really what was being treated, but on the assumption that she was suffering from some inflammation of her central nervous system.

The results were impressive. In three days, she was speaking almost normally, swallowing, eating, and feeling much improved. She was home by week’s end. V.’s balance was still off, and she had to work with a speech pathologist because her tongue didn’t feel normal. But her cadre of physicians put this under the “post viral syndrome” banner, all of her tests having come up negative for any known disease. She returned to the full-time work of mothering and her architecture firm. A frightening episode seemed to pass as a blip on her radar.

The next year, the unthinkable happened. In July 2002, 19 months after the onset of her original symptoms, V. felt a strange tingling, first in one hand, then the other, then in both legs. After another battery of outpatient tests, she was diagnosed with multiple sclerosis. Four affected extremities at the same time would be extremely atypical of M.S., but at the time, there were no other reasonable alternative diagnoses. Five months later, while trying to get out of bed one morning, V. came to the horrific realization that she couldn’t move. She lay there as panic began to engulf her. She was paralyzed, a quadriplegic. All she could muster was lifting her head off the pillow and crying out for help. An independent, intelligent, assertive, articulate architect and mom had become a helpless infant overnight.

For the next three months, V. needed around-the-clock care. But as awful as the quadriplegia was, V.’s ordeal was about to get even worse. If you are trying to learn again how to wiggle your toes, 20 outpatient visits per year is a joke. But when V. reviewed the fine print of her insurance documents, that was all her policy provided. How many of us read the page after page of fine print, written in legalese on an insurance policy?

As V.’s condition again improved, with hard work on her part, every day became an endless series of telephone arguments with the insurer. Dr. N., her newest neurologist, consulted with colleagues around the world and still could come up with only the vague possibility of new diagnoses that might better fit V.’s unusual relapsing, severe paralysis. V. was never without a panoply of oral medicines that had to be taken throughout the day. A week didn’t go by without injections of some sort and intermittent intravenous infusions. Almost none of these were covered by insurance. With continuous physical therapy—again, paid for out of pocket—V. adapted to the smaller permanent deficits in sensation, balance, and muscle atrophy, and she maintained her determination to beat her disease.

She relapsed into quadriplegia again just before Christmas 2004 and this time got a new diagnosis: neuro myelitis optica and relapsing transverse myelitis. Again, her insurer offered just 20 outpatient physical therapy visits. After repeated “medical necessity” letters from Dr. N., her insurer extended physical therapy coverage for a month or so, but then halted payment and this time demanded reimbursement for the coverage they had already provided. V. estimates that of the more than $500,000 spent on outpatient therapy in the last six years, her insurer has picked up less than a fifth of the cost. Much of their family savings have been exhausted making up for the shortfall. The carefully planned college fund for the boys, as well as any realistic hope of retirement security, are in serious jeopardy. As of this writing, V.’s insurer will pay almost none of her bills related to her condition.

On top of the tragic circumstances of V.’s rare disease, how could she and her husband, a comfortably middle-class couple, end up on the verge of destitution, with little money for their children’s futures, scrambling to make ends meet? Like many of us, they trusted their insurer to have their best interests at heart. But her insurer is an industrial giant that owns other insurance companies, financial institutions, and extensive real estate worth billions of dollars. In April of last year, the Wall Street Journal reported on one insurance company medical director who had over $1 billion in compensation and retirement benefits. Where do you suppose that money came from?

There was a time, several decades ago, when insurers were small enough and competitive enough that they at least had to act like they cared. But today, insurers are in business to make money for shareholders, not to care for you. Their protocols are designed to maximize profits and so that virtually no employee has latitude to make a decision.

V.’s case is by no means unique. Recently, an ABC affiliate aired the story of a man with breast cancer. The drug needed to treat his disease, while “on-formulary” with his insurer, was not “on-formulary” for him. The insurer’s rationale? The medicine was only approved as “on-formulary” for the treatment of women!

Every single day, as a practicing ob/gyn, I hear insurance horror stories from patients. Women denied life, disability, and/or health insurance because they have tested positive for the BRCA1 or 2 gene mutation associated with increased risk of breast, ovarian, and colon cancers. Women denied coverage because they have herpes, or a history of abnormal pap smears, or a history of hepatitis. This week, I had a 22-year-old new patient who works 40 hours a week with a company that provides benefits, but their insurer won’t cover her at all. Why? Because when she was 16, she contracted a form of tuberculosis that left a nodule in her liver. Her chest X-ray was always normal. She never had pulmonary involvement. She received the appropriate therapy with antibiotics for 15 months and shows no sign of progression or of being infectious. But because of one event, beyond her control, in all likelihood she will never be able to obtain coverage for any of her health-care needs. Her routine doctor visits, pap smears, breast exams, mammograms, vaccinations, flu shots, and eventually obstetric needs will all be on her shoulder forever, just as they will be for V.

You don’t have to be a physician to hear examples of insurance nightmares. I was talking to the fellow painting our house. He’s 45, an ordained minister, but currently working in his own business painting and repairing houses. As such, he could only get major medical coverage with a $2,500 deductible and a six-month rollover. Recently his 21-year-old daughter had a tumor that required surgical removal. The doctor filed the initial consultation (denied by dad’s coverage) and then scheduled the surgery for two weeks later. In the interim, the policy rollover period came up two days before the surgery. The diagnosis was made in the previous policy period, and coverage of his daughter’s breast tumor was denied as “pre-existing.”

No matter what the fiscal justification offered by the insurance industry for discount contract medicine in the guise of “preferred providers,” no matter how sound their financial reasoning for avoiding “pre-existing conditions” that predictably may cost them more than they can make in premiums, no matter how sly the insurer might be about structuring HSAs so that they rarely require payout by the company—this country teeters on the edge of radical change in both its delivery and method of paying for health care. While there are myriad consumer-driven health plans out there, many of which revolve around some variation of health savings accounts backed up by federal safety nets for the indigent and working poor, the possibility of nationalized health care for everyone looms on the horizon. A single-party payor “works” for tiny European countries with homogenous populations, and even for neighboring states like Canada, (which, by the way, has essentially no people in it; the country has 10 percent the population of the United States). But there are problems in trying to apply it to the more than 300 million in the United States. One need only look at health care in the military today to get a taste of what may be in our future. While there are many dedicated and extremely talented people in military medicine, the logistics of making services available when, where, and in the right magnitude across a vast system can cripple the delivery of care to the point where many people fail to receive the help they need. Bureaucratic control, decreasing compensation, and micro-management by unqualified individuals will not attract the best and the brightest, leaving a question mark over the future quality of all medicine in the United States. Americans unaccustomed to long waits for elective procedures may find a very different climate once medicine is socialized. Typically, the private sector has incentives to be efficient. Federal programs do not.

As the debate over health care heats up with the coming presidential election, those who would seek options other than socialized health care need to speak and speak loudly. Ask for legislation that protects the poor, like raising the Medicaid ceiling for a family of four to at least $28,000 per year. Ask for legislation that promotes individual choice and responsibility, like making health savings accounts possible for many more people by prohibiting insurers from charging outlandish premiums for high deductible backup policies and creating separate “deductibles” that inflate the real deductible far beyond what is advertised. Ask for legislation that brings at least some measure of sanity and competition to the pharmacologic industry such that our own population is not penalized with prices often many times higher than those charged overseas. Insist that legislation be enacted to truly eliminate the insurance industry’s denial of coverage due to pre-existing conditions. Believe me, the five giants could easily distribute the load so that not one of them had a dent in their profit beyond what the others suffered.

Since few of us ever actually communicate with our legislators, at least do this: read the fine print. When you pay for an insurance policy of any kind, don’t just sign it in front of an agent. Hang on to it for a while. Read it and ask questions if you don’t understand something. And when you file a claim for anything, make sure you follow through on it. It is thought that the average insurance claim is for less than $200. When that claim gets lost or denied right up front, there is a tendency for those who are better off to pay out of pocket and avoid the hassle. Imagine if only one-fifth of the people who file every year allow a legitimate claim to slide unpaid, for whatever reason. That would mean perhaps 30 million claims times $200—$6 billion for the insurance industry that doesn’t belong to them.

People like V., struck down by catastrophe, have often only their spirit and the generosity of others on which to rely. As of this writing, V. had just been told she would need up to four infusions a year for the rest of her life of Rituximab, an experimental drug for her class of demye­linating disease. That’s $11,000 per infusion. It’s not covered by her insurer.

When Americans pay for a product, whether it be a microwave, an automobile, or an insurance policy, they should reasonably be able to expect that the product does what it purports to do. Evidently, V.’s microwave doesn’t boil water, her car doesn’t roll. And her insurer just doesn’t care. Does yours?

Dr. Jeffrey M. Thurston is an obstetrician at Presbyterian. He is the author of Disrobe Completely: Real Life Cases Reveal the State of American Medicine and 1,000 Questions About Your Pregnancy.

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