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Citizens' Health Care Working Group

Health Care that Works for All Americans

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It's Up To You

What's next in the national discussion about our health care? This is your chance to be part of an important debate. Use the resources of this web site to learn about our health care system.

What happens next, depends on you.

Citizens' health care experiences:

We respect your privacy. All comments will be displayed anonymously.

SUBMIT your own experiences or complete our poll.

Go to current Shared Experiences page, or read entries from other months: July 2006; May 2006; April 2006.

icon - man speakingJune 30, 2006

I am a chronically ill person who is considered self-employed. I am a medical transcriptionist working from my home. Because of constant pain, I am limited in the number of hours I can work in a day, which means less money coming in. I cannot afford to see a specialist (in my case, an orthopedist) to get my pain under control, so I can work more. It's a nice little catch-22. If I could work more, I might be able to afford health insurance, but I need medical care so I can work more. (Submitted 6/17/06)

icon - man speakingJune 29, 2006

My sister is a widow at age 53 and she is diabetic. She was on her husband's Blue Cross Blue Shield insurance. She was able to keep it for 36 months on a COBRA plan which was so expensive. Once that ran out she was unable to get insurance, because of pre-existing conditions or they wanted to have a rider about the diabetes or any possible related problems which could be anything under the sun. She was on this insurance for years. We have no way in the country to help our people, unless they have nothing and go on welfare. My daughter who turned 23 and is in college has been on my insurance. Once they turn 23 they are taken off. She has mild Asthma and it's the same problem for insurance. She has friends who are dealing with it to, and some chose to get pregnant and go on welfare and have their schooling paid for and health needs met. What are we doing to our kids? If my State didn't help pay for insurance it would be close to $1000 a month. We need a National Health Care plan for all Americans. I would be willing to pay extra taxes to be sure every person could get help. (Submitted 6/8/06)

icon - man speakingJune 28, 2006

My family has been without medical or dental insurance for about half a year now. My husband lost his job (which paid well and included full benefits) early last year. While he was unemployed and looking for a new job, we were able to continue his insurance via COBRA, but that cost almost as much as our mortgage--unemployment benefits were far from enough. When he found a new job, he could get insurance--which would have cost him about 1/4 of his annual take-home (which was already close to 1/2 of his previous salary as it was). There was no way we could afford that with our dwindling savings, so we have had to do without. It is very scary to be a parent of a young child and to have no insurance. My husband makes too much to qualify as low income and get some assistance, but he doesn't make enough to cover our monthly expenses as it is, without insurance and not even counting the cost of my college tuition and books (which again, we don't qualify for assistance with). We are part of the lower middle class that always seems to fall between the cracks. Without some change sometime soon, we may even have to give up our home just to survive. (Submitted 6/8/06)

icon - man speakingJune 27, 2006

Recently my son broke his toe and needed care. He went to outpatient and was told it would cost $800.00 for an x-ray. Since he has a large deductible of $5000, he decided to check 2 or 3 other facilities with x-ray capabilities. He found one that would accept $200 for the x-ray alone with additional costs for the physician. He paid the $200 and waited several hours. They then told him it would not be ready until tomorrow; when he came back the next day they had sent it to a radiologist, without his permission. He asked for the x-ray, which he paid for, and they couldn't or wouldn't come up with it. This has been several days; he paid for an x-ray, has not yet seen the x-ray to give to his doctor, and has not had treatment. This facility is obviously upset at having to keep their price low and my son not using their high priced radiologist. (Submitted 6/8/06)

icon - man speakingJune 26, 2006

I am 62 years old and retired. I served in the military during the Vietnam War and worked for the same employer for 30 years after. I have always paid for health insurance. No one gave me anything without me paying my fair share. I have never been denied a medication or medical care of any kind. The secret to that is I never relied on the government for my health care. People who want a "guaranteed" medical benefit are implicitly relying on the government for that benefit. They don't want to pay, they don't want to be restricted, they just want. Period! The free market is the only reasonable and efficient way to provide health care, or most anything else for that matter, for the vast majority of people. Keep government out of it or you will have the same medical mediocrity that exits in Canada and other "guarantee" countries. (Submitted 6/8/06)

icon - man speakingJune 23, 2006

I am 35 and in 2001 I had Chiari Decompression surgery (brain). I have since had a clean bill of health but can't get health insurance. Because it has the word "brain" in it, they wouldn't cover me. I have been told by another company that they have written policies for people with cancer. But they denied me due to this surgery that was done 5 years ago. I was told to get a job that offers group ins. that is the only way to possibly get coverage. I am a stay at home mom with a 2 year old and 9 month old, now I am forced to go to work and put my kids in day care for someone else to raise them. Now, I could take that money for daycare and put it towards an insurance premium that I am willing to pay for. Why can't I choose how I want to pay for my ins.? (Submitted 6/8/06)

icon - man speakingJune 22, 2006

My husband and I are self-employed. The most affordable individual health insurance plan that we could afford takes up almost 20% of our income, yet it has an incredibly high deductible, and covers virtually nothing until we've met the deductible. So we are essentially paying almost 20% of our fairly meager income for "disaster insurance" healthcare coverage - something to take care of a major, life-changing health event such as cancer or being run over by a bus. We're trying to live the "American Dream" of running our own business, and we're struggling to keep our heads above water. It would be nice for healthcare to be a standardized, universally available right, instead of a privilege for which one pays dearly. Again, I'm not wishing for a free handout - just for things to be a little bit easier. Thanks for letting me share these experiences. And thank you for working to make things better for all of us. (Submitted 6/8/06)

icon - man speakingJune 21, 2006

My cousin's little boy (who just turned three years old) has been battling leukemia for over a year. My cousin has a very low income, and so they had to resort to Medicaid for his little boy's hospital care. It turns out that the hospital doesn't treat Medicaid patients well at all. They have discharged him from care despite high fevers, refused diagnostic testing (such as chest x-rays when he was in fact developing congestive heart failure), and kept him out of the ICU despite available beds. He actually arrested minutes after they finally conceded that he should be in ICU, and they nearly lost him.
We need a system of universal care so that this sort of preferential treatment never takes place again. A three-year-old boy should never, ever have to suffer an appalling level of healthcare because of his parents' financial status. (Submitted 6/8/06)

icon - man speakingJune 20, 2006

Unfortunately I have spent the greatest part of my adult life (15 years) without health insurance, so this issue is near and dear to my heart. I even was forced to file bankruptcy in 1997 due to some $25,000 in medical bills I had accumulated without health insurance because I could not pay them. These bills were from one hospitalization alone. I can assure you that most of the folks working jobs at McDonalds, gas stations and the like have no health insurance through their employer. It is not affordable or even a good program most often. In lieu of health insurance we (my husband and I) have done things like "borrow" other family members for prescriptions (antibiotics and such) and self medicated on old prescriptions to avoid outrageous health care costs. Not a good idea you would say? What choice is there? We have a family of 6 and cannot lay around sick.

The worst experience was probably when my husband was laid off and we could not even afford the COBRA policy at some $600 a month. I mean that is what laid off means, being without money. My children were subsequently covered by state funds, but my husband and I did not qualify even though we were unable to pay our bills on his income at his new job. It was so unfair to me and our health suffered. What good are 2 sick parents to 4 healthy children? Do they not need us? (Submitted 6/7/06)

icon - man speakingJune 19, 2006

The company I worked for here in Ohio went out of business a few years ago, suddenly leaving 65 employees without work. When 'COBRA' insurance ran out several months later, I had to find health insurance on the private market. Most companies I applied to did not want to insure me at all, or wanted to charge me THOUSANDS per month, just because I had common hypertension, and was on a few meds!!! Now mind you, I was (at the time) otherwise a healthy 40 year old, whose ONLY health issue was I had high blood pressure. MILLIONS of Americans HAVE high blood pressure (hypertension), and they have health insurance, I thought. Why can't I? Finally, feeling dejected and disappointed, I had to use the services of a 3rd party rep, and he finally found me health insurance approximately ONE YEAR LATER!!! I was uninsured for a year, despite my trying to desperately procure health insurance. Thankfully, I did not get sick during that year. I can't begin to think what a financial catastrophe it would have been for me and my family if I had an illness or condition that would have cost tens or hundreds of thousands during that time I was uninsured and looking! Something is seriously wrong when we can call ourselves the most advanced nation in the world, yet so many of our citizens can't afford, or can't find health insurance! (Submitted 6/7/06)

icon - man speakingJune 16, 2006

I have worked in the health care system myself since 1965 and helped thousands. About eight years ago while living in Texas, I became very ill with hypertension (220/110). I lost my job because of illness and had to seek medical care at the only indigent health care clinic in the County. It was demanded of me to present a drivers license, automobile insurance and a utility bill, which I did. I was flatly and uncompassionately refused treatment because the address on my auto insurance did not match the address on my driver’s license. I almost lost my life. Meanwhile the majority (approximately 90%) of patients at the clinic were extremely young pregnant women who were in fact illegal aliens and had never paid a dime into the system. I was too sick to do anything but cry at the time. I barely had enough gasoline to make it to an emergency room. It seems as though if a person has the ability to obtain the required documents whether they are forged or not, that person is eligible to be treated at the only indigent taxpayer sponsored clinic in the County. I am a healthcare worker and have been for many years. I have experienced a downhill slide on a steep slope of the healthcare experience. We are all paying for healthcare one way or another. Let's even the field. (Submitted 6/7/06)

icon - man speakingJune 15, 2006

In my 20s and 30s, I thought I was doing my part to keep healthcare costs down by seeing a nurse practitioner instead of a doctor for yearly exams and other relatively minor things. Imagine my surprise when I found out my insurance was billed the same amount for each visit as if it had been with a doctor. There should be lower cost alternatives... maybe there are now with all these "minute clinics", I'm at a point where I need to see mostly specialists, so my opportunity for lower cost visits is now gone. (Submitted 6/6/06)

icon - man speakingJune 14, 2006

I am a registered nurse of twenty years on the west coast. From my years of practice I have seen that there is a very large need for physicians to discuss end-of-life care and have that discussion early on with patients. Even a public health message would be good. We do the craziest things and spend millions of dollars on procedures on eighty and ninety year old people. Recently I had a 99 year old woman who received a $70,000 pacemaker/defibrillator, and another patient who was in his forties that could not afford a life-saving operation. Doesn't make much sense! I know that most physicians blame lawyers and say that they will get sued if they do not do "everything" for each patient. I think it is time to have discussions on the fact that life is finite and prolonging it with the latest technology when one is in their very advanced years is not a good use of our resources. I am sorry to say that most physicians that I have met in the private sector are only worried about their piece of the pie, not the good of the entire population. Very sad because they have huge lobbies that promote the same old system that is ready to crash. (Submitted 6/6/06)

icon - man speakingJune 13, 2006

I have had a difficult time getting my insurance to pay for covered services. It seems like every time I make a claim, regardless of how basic, they always deny it at least once. “No,” seems to be their default position. And they refuse to pay for things like chiropractic or physical therapy, which could alleviate more costly care later. My doctor is so busy, I can barely get 5 minutes of her time when I schedule an office visit. I feel like I am making health care decisions without any real information or guidance. (Submitted 6/6/06)

icon - man speakingJune 12, 2006:

I have been unable to work since my knee surgery which was on Oct. 18, 2006. I was injured on April 14, 2005. I know that my injuries would have been totally healed within 6 months but Workman’s Compensation Insurance hired by my employer kept delaying my healing process by denying treatments. I had never been on workman’s compensation before and needed guidance. The laws have changed in the past ten years so the employer is totally protected and the employee has to do their best to figure out every little detail of what to do in what order and when. The insurance has the job to make sure the injured does not spend too much money; they don’t care whether the injured person suffers for a day or forever. My knee has either healed wrong somehow or is as healed as it will ever get. My doctor did his part very well but he told me before the surgery that he would not guarantee it would ever be at 100% since I had been denied treatment by the adjuster from the hired Insurance Company for several months after the injury occurred for petty reasons. The injured has to do the job of the adjuster now as far as paper work or anything time consuming. I cannot climb stairs, squat, walk, run, crawl, twist, or some therapy moves without some degree of pain. Each of these movements causes different degrees of pain. Physical therapy has helped.

I cannot climb stairs like a normal person. Going up I put my left foot on the stair and then my right foot on the same stair. Going down I put my right foot down on the stair and then my left foot on the same stair. I repeat this for each stair. I cannot lift little children or play with them on the floor. I cannot do a lot of things I could do before I was injured at work. I want my back and right knee back the way they were before the work injury. I want to work again and be able to give 100% like I always have when I worked for any company. But I cannot do that because the laws do not protect me, or anyone who is seriously hurt at work I have never been on Workers Compensation in my life and never thought I would be. I think many people who go through the same experience would like to know why they are treated so badly for something that was the fault of someone else. People just want to get back to the way they were if possible and get on with their lives and go back to work. (Submitted 6/3/06)

icon - man speakingJune 9, 2006:

My niece is 18 months old. When she was about 8 months old we had to take her to the hospital because she was having breathing problems. They didn't know what was wrong with her so they flew her to another hospital where she stayed for about a month. They still did not know what was wrong with her and wanted to send her to Children's Hospital in Denver but couldn't send her until she was declared disabled and on Medicaid. This took over two weeks to get this done. They then sent her in an Ambulance to Denver, CO where they treated her within a week and sent her home. She was diagnosed with Pulmonary Hypertension. She is now 20 months old takes Viagra every day to keep her veins open to pump blood through her body. She is also on oxygen 24 hrs a day. The saddest part is that her mom (my sister) is 20yrs old and unable to work because Medicaid will not pay for a respite nurse to come in and take care of my niece so that my sister can finish her education and get a job. My niece is still considered disabled so therefore my sister gets $500.00 a month. She is expected to support herself and her daughter on $500.00 a month. She would like to work but us unable to because of the inadequate health care. This a continuous battle for our family. Something has to change. (Submitted 6/3/06)

icon - man speakingJune 8, 2006:

I am a 26 year old divorced mother of two young children with an income too high to qualify for Medicaid/community health programs for my children, but also too low to afford quality healthcare or health insurance for them. The court in my Indiana county has ruled that a noncustodial parent has no responsibility to provide health insurance, which leaves all health insurance premiums and the first $900 in health care expenses to me. I am a local government employee working a 39 hour work week, but still considered a part-time employee, therefore no benefits. When I requested full time employment status through a fully funded grant to the county, I was threatened with a cut in hours. I have become very frustrated, and when I was diagnosed with mild depression as a result of my divorce and the full financial responsibility of raising two kids, insurance premiums for myself skyrocketed. Now, I feel that I should discontinue treatment for my depression so that I can enjoy lower health insurance premiums and better afford health insurance for myself and my kids. Currently, the kids still have no health insurance, do not qualify for CHIPS or any health program, and I cannot afford to be the sole payer of health insurance premiums for them and still pay for their upbringing. I receive no child support or government assistance of any kind. I feel like I am being punished for trying to work and do the right thing. Something has gotta change. (Submitted 5/31/06)

icon - man speakingJune 7, 2006:

Working with technology was and is currently helping make a terrible experience better. With the help of a hospital-base test system, I found that I was able to monitor my mom (who suffered dementia Alzheimer for a long time at home) with less help and more credible information and also less visits to the hospital emergency room.
Now I remain active with the technology and use it in assisted living to keep her from a nursing home. Nothing is perfect, but it helps not only the caregiver but dignity to the patient while the doctors get credible information. (Submitted 6/2/06)

icon - man speakingJune 6, 2006:

In 1989 I was diagnosed with an autoimmune condition destroying my liver. I had full health insurance coverage. By 1999 the condition had worsen and was liver transplanted at our local hospital. I was required to pay a $5,000 co-payment and some other costs. Soon after that the hospital discontinued liver transplantation due to cost effectiveness. Now individuals have to compete at a regional level for organs and many are not surviving. At this time my employer was paying 60% of the health insurance premium and presently paying 80%. Even with our employer increasing its share in paying the health insurance, in the last 10 years our salary raises are pretty much absorbed by our increasing cost of our share. Through my health insurance cost has tripled (300%) in the last 15 years, I have not noticed any substantial improvement in healthcare. Maybe Walmart needs to run our healthcare system. You may be getting closer to getting what you pay for. Currently, after 32 years of working I am not able to retire because my health insurance cost will go up by about 500% about 25% of my retirement income. I am looking for other options, but have been unsuccessful. I may have to just settle on working the rest of my life to have the health coverage I need. When you look at health care coverage in our State, I am one of the fortunate ones who at least has health care coverage. As a hard working independent individual who really wants to assume responsibility for me and my family the time has come when I will need to rely on governmental or societal assistance for survival. I have come to the realization that our country needs national healthcare like our public education system and give it the same importance and entitlement. You need health before education. Our country can make it work. (Submitted 6/2/06)

icon - man speakingJune 5, 2006:

I was taken off work by my physician 2 yrs ago due to a variety of health issues. I realized that I was not improving, and filed for social security disability. Upon being denied, I obtained legal counsel. In looking for health insurance to cover me in the interim, I was denied because I had a renal angioplasty in 2000. Additional reasons for the denial included the medications I was on and the frequency of hospitalizations. When my COBRA ran out in Feb, I first attempted to utilize the supposed discount savings plans. I immediately realized I would be unable to afford my medications. I turned to the State for assistance, and now have been informed that it will be 6 - 12 months before I hear of a determination. In the meantime, my physician has possibly found a new condition that needs treatment, and I am currently without several of my medications and praying that I am able to stay out of the hospital. (Submitted 6/2/06)

icon - man speakingJune 2, 2006:

I lost my job after 27 years due to the company going bankrupt. My COBRA coverage ran out, and I have been unable to obtain insurance coverage due to a blood clot that I had 11 years ago. The doctors were never able to determine a cause for the clot; therefore I continue to be on Coumadin (a blood thinner). Numerous insurance companies have denied me coverage because of this. I have not been able to find work with an employer who has group medical coverage because I am now the full-time caregiver for my 91-year-old mother. I am caught between the proverbial rock and a hard place. (Submitted 5/27/06)

icon - man speakingJune 1, 2006:

I have been turned down by my local MA office and Minnesota care because I do fall a little bit above their guidelines and I do not understand that when my husband is on Social Security and I work as a casual worker in a nursing home. What are people suppose to do? Just end up running huge medical bills if they get sick or hurt and they can't pay. When a person does go in the doctor’s office and they are asked about their outstanding bill at the desk is very embarrassing and should not be done. What is wrong with this country that they can let people go without medical insurance until it is too late for them. (Submitted 5/24/06)

Read previous Shared Experiences from:
July 2006
May 2006
April 2006.


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