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.
