I have been medically stable for three decades. Common sense dictates I see a urologist on a yearly basis to insure no problems arise--kidney disease and bladder cancer is common among paraplegics and not always symptomatic. I have been very lucky--luck based on the fact with family support I can afford to see the urologist regularly. I have had precious few urinary tract infections, UTIs, the bane of most paraplegics, and have not had a single serious issue with my kidneys or bladder. All this changed last summer and has reached a peak in the last month with another and serious UTI. This is why my posts have been less frequent--I am sick often. UTIs are debilitating and at this point costly. How costly is a UTI? A urine analysis and culture is $150. Anti-biotics for a week range from $50 to $160 depending upon what the bacteria is sensitive to. An office visit is $165. In short, I spend between $300 and $400 every time I get a UTI. Not a dime is covered by insurance. This makes no sense to me given the fact if I had to be hospitalized for the same problem I would be completely covered. But my expenses do not end with anti-biotics and office visits. Renal ultra sounds are required as are many other tests--again none of this is covered by insurance. To reiterate: I truly am lucky--I have the family support and experience to access excellent health care. I have been followed by the same urologist who is not only a kind and compassionate man but known within his field as "the rock star of urologists". Sure I am worried about myself--it seems highly likely surgery is in my near future. My prognosis is excellent and I have no doubt that I will be myself in a matter of months. But what keeps me up at night are those that do not have the family support I enjoy. I also worry about those with poor access to appropriate health care. Being paralyzed is different and there are certain risks associated with paralysis such as kidney disease already mentioned. Does you average paralyzed person have access to a physician with the prerequisite knowledge? For a few people like me, the answer is yes. However, I would venture to guess most paralyzed people needlessly suffer from problems that need not arise.
Given my recent problems, I have been thinking a lot about the health care reform bill passed by the House and signed by President Obama. Selfishly, I hope in 2014 I will have access to good health insurance. This hope however is a microscopic in comparison to the implications of health care reform for those denied access to basic health care. And who is denied access to adequate health care? The most needy among us: the underemployed, unemployed, and disabled. That denial is both subtle and grievous. For those of us with pre-existing conditions it means health care premiums that are beyond our means. For other people that need an electric wheelchair, often costing upward of $25,000, they are forced to settle for an inferior model that compromises their life and independence. Have we heard such stories in the media? In a word, no. In place of debate we have vicious political rhetoric--think of the declarations espoused by the Tea Party about death panels and the government takeover of health care. Lost in the hysteria is that real people are suffering and emergency rooms nation wide are too often used for basic health care. Change is desperately needed. I have no idea what the health care reform bill will do but I do know the existing system is hopelessly broken. Well, broken to about half the population without access to health insurance and people like me--costly people insurance companies hate.
What we need to do is far more complex than change the law as it relates to health care. Thus the health care reform bill is just the first baby step toward changing our health care system. What is desperately needed is to change the cultural perception of medicine, insurance, and health care. Health care must be thought of as a right we all share. This right comes with responsibilities such as caring for one's self to the best of your ability. The medical establishment must put the patient ahead of profit thereby instilling humanism in medicine that has been lost. Insurance companies must learn to make a profit keeping people well instead of profiting from illness alone. For instance, it make no sense that blood pressure medication is so expensive people cannot afford it and hence run the risk of stroke, extended hospitalization and rehabilitation. Let me be even more self directed. I have been hospitalized once in the last 30 years for a complication directly related to my paralysis. This was possible because I took care of myself--and all those expenses came directly out of my own pocket. Yet here I sit without adequate health insurance because I am deemed high risk. This makes no sense and highlights why we need to radically change the way we think about health care and by extension disability. There is historical precedent for such change. The ADA was passed almost 20 years ago. Prior to the ADA being enacted into law it was perfectly legal to deny a person with a disability access to a public education. Unemployment was rampant and many people with a disability, myself included, were called names, mocked, and jeered at. I remember this sort of vilification vividly and it is a thing of the past for the most part. In part people with a disability were isolated and stigmatized because they were feared. In much the same way many Americans fear what the health care bill will do. I do not share these fears as it caters to the lowest element of humanity. The medical industrial complex does not want change and through its lobbyist have created a hysteria among the population. If you doubt this just watch CNN for an afternoon. Fear mongering leads people to look for someone to blame and who is the easiest target? Why expensive people such as those that have a disability and represent a drain on the system. This is why the health care reform bill is but one tiny step in the right direction. Hopefully in time it will change the way we perceive health care and those that access the health care system. I for one look forward to the day when I can go to a hospital and not fear my life will be deemed less valuable or my care too costly. Sadly, I sincerely doubt I will live to see this day.
5 comments:
I am sorry you've had issues with UTI's--they are expensive and get as bad as the flu.
Not only can people without insurance not afford health care, but sick people with insurance cannot afford to use it. The initial hefty yearly deductible alone presents a big barrier to care for many, along with co-pays, 20% or more coinsurance for radiology, labs, hospital and what insurance won't cover or covers at laughable rates (wheelchairs and other DME).
Truly, there are concerns we with disabilities and illnesses do and will have with getting access to care and appropriate care--and that will likely continue.
People are are already ineligible to buy insurance will be able to buy insurance within the next 6 months through a government program; by 2014 the insurance companies will have to pony up so that the government doesn't bear the burden the insurance co's create by kicking out those who most need insurance. I don't know what the premiums will be and if people can afford them since so many who are ineligible can't work. I'll give some links on my blog about this shortly or tomorrow morning.
William, I'm sorry you are having those troubles and I hope things resolve very quickly and easily for you.
For my cat, who is subject to those things, it's simply a matter of staying on urinary tract health cat food the rest of her life. I wish it was that simple for people.
I also wish I understood how come it is so damn expensive to go to the doctor. I remember about 20 years ago, I could see a nurse practitioner for almost anything, and they charged $19/visit. You paid on the spot and were on your own filing insurance, though - maybe that was it, the doctor's offices weren't employing an army of clerks and waiting months for their money from the insurance companies? Sometimes I wonder if insurance as it has gotten to be isn't the problem, or at least a big part of it.
I don't like thinking about health care reform, it really bugs me. Here is the thing, we are putting more people into an already broken system, this makes no sense to me. I would have liked to see bolder attempts to repair the insurance systems most of the uninsured or underinsured will be pushed to; medicare and medicaid. And bolder insurance regulations in general.
For instance I know a seven year old boy in the deep south that doesn't go to school. Why? Because after a year of taking a new medication (and benefitting, he returned to school, his functional levels increased) Medicaid stopped covering it. The company that makes the orphan drug offered to provide the drug for FREE to the child provided a geneticist in the state prescribe it and fill out the paperwork for it every 3 months. Great right? Not so fast, no doctor that is qualified to sign off on the drug in the state takes Medicaid because of it's ridiculously low reimbursement rates. Instead this boy sits at home, socially isolated and ill when he could be in school. Medicaid rates are so low most doctors won't see those patients anymore, and Obama wants to reduce Medicaid's spending. This makes no sense, instead he seeks to expand the population entitled to Medicaid increasing the rolls, while reducing costs. Ugh. Sorry, but I'm incredibly cranky and pessimistic today!
A couple of years ago I met the multi-millon dollar cap for my health insurance. I'm fortunate to have access to "high risk" insurance currently, and that my well off family is able (and willing) to pay for many of the obscene costs of associated with my medical needs (even though it is a strain) for me. I wish I felt confident that in 2014 I'll have access to affordable health insurance, but I don't. I think that I'll simply have access to insurance that's more restrictive in what it covers than I have right now. I currently have about 1k of uncovered medical expenses and copays every month, not including the unusual things that come up from time to time (urgent doc visit, er visit, etc). If I wanted to stay at home and rest all day instead of being functional, my costs would probably a third of that.
My cousin who has EDS also had a complete Tranverse Myletis when she was a teenager that paralyzed her. She deals with a lot of UTIs and the associated issues. Sometimes it seems like she's in the hospital with a kidney infection every other month. I'm sorry to hear about your issues with this Bill. No rest for the weary...
Frida, Yes, people with health insurance who have co-pays often cannot afford basic care. And yes, what is covered in terms of wheelchairs and other durable medical goods is a joke. I look forward to reading your blog and getting the links you mention.
Laura, Like you I wonder what happened to medicine and doctors. Long ago when I was profoundly ill as a child not much could be done. Many of my peers died but I recall great compassion and not a single worry about money or health insurance. With regard to my UTI, why does a basic test such as urine analysis and culture cost $150?
Holden, I cannot defend Medicaid or Medicaid as they are deeply flawed. We agree the system is hopelessly broken. Hence reform as limited as it is is a step in the right direction. I agree a far bolder program of reform would be better but Obama is the ultimate compromiser. I for one am thankful for this small step forward. I hope it is one of many and hence like the ADA--a harbinger of real social change.
As for my UTIs, a surgical solution exists. My problems are temporary and will be resolved.
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