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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; June 2006; April 2006.

Shared Experiences, May 2006
icon - man speakingMay 31, 2006:

I used to have full coverage insurance through my employer. After being laid off, I cannot find full coverage insurance, because my health conditions are excluded from coverage. As an independent insurance seeker, I am offered the opportunity of getting insurance that covers everything else that I do not have. The insurance excludes me from getting covered on my health conditions that I do have. Because I can get insurance and have to pay for whatever they don't cover, this mean I would have to pay double. I have investigated Medicaid. I do not qualify for Medicaid, because I have too much money in savings. My doctor does not except Medicaid. I have investigated in CHP+. I do not qualify because Survivors Social Security pays the too much. I have investigated in the high risk pool in my state, Colorado. That plan is exorbitant and prohibitive to pay. COBRA was offered, but it is too exorbitant and prohibitive to pay. When insurance and health care coverage is equal to or greater than a mortgage payment, I have to choose which one is more important to pay. I have a discount plan, but it pays very little. On average, it pays 10%, if I don't go to the doctor more than five times a year. This is not health coverage. However, it will provide a card for the hospital if I need to go. Hospitals are now refusing care if you do not have insurance or can pay in full up front. Now I am facing a possible catastrophic event, which could happen at any moment. What am I going to do? Would I need to sell my house? Would I need to move out to the street? (Submitted 5/24/06)

icon - man speakingMay 30, 2006:

I have osteoarthritis in my back, hips, shoulders, and knees. I cannot walk but maybe 1 city block now. I am also bi-polar. I take 6 different medications every day. I work for a tax preparation company so I am only employed part-time during the summer months. I do not qualify for health insurance because I am a "health risk" and no one wants to cover me. Furthermore, I would not be able to afford health insurance premiums because I do not make enough money. I do not qualify for Medicaid or Medicare because I am not raising children and I am working. Fortunately, I am able to fill out a lot of red tape and get free medications from the companies that make them; however, it costs $45.00 per visit to see a doctor. Heaven forbid should I have to go to the emergency room for anything because I would not be able to afford it. I wish someone could help me and others like me that are trying to work and pay the bills on our own get decent medical coverage. I could go on and on. I also found out I am in the early stages of glaucoma and will be starting more medications for my eyes. I honestly do not know what I am going to do. I hope someone can help us in this work. (Submitted 5/25/06)

icon - man speakingMay 26, 2006:

I am a self-employed, single woman (age 58) and can't afford health insurance. I have been forced to let my health insurance lapse three separate times in 15 years due to the high cost of premiums. In 2003. While uninsured, I had to go to the emergency room for food poisoning from a commercial food product. The "non profit" hospital charged me three to four times more than what they would have charged an insurance company. I couldn't pay the bill. They turned it over to an aggressive collection agency who sued me (and I lost). It is a national disgrace that American citizens are priced out of the market for health care. It is a national disgrace we have over 46 million uninsured people, many of whom work full time and are middle class. It is a national disgrace that Americans must choose between health insurance or a roof over their heads. (Submitted 5/15/06)

icon - man speakingMay 25, 2006:

This comment is in regards to Lee Memorial Health System - Trauma Center in Ft. Myers, Florida and the day they saved my daughter's life. This is the only trauma center on Florida's Gulf Coast between Tampa and Miami and there are more than 1 million residents in the Lee County Trauma Services District. Since the Florida Legislature created the state's first trauma legislation in 1982, no consistent and sustained funding source for the trauma centers has been established on the state level. It's expensive saving people's lives - expensive equipment, helicopters, staffing trauma surgeons and other specialists 24 hours a day, liability insurances and losses due to inadequate Medicare coverage and uninsured patients.

Luckily it's still open! My only daughter (19 years old) needed them on New Years Eve 2003 after a severe collision. She suffered from internal bleeding, brain injury, two tears in her aorta, crushed left pelvis and rib cage and collar bones, a broken leg and ankle, and a face laceration with subsequent nerve damage. This wonderful man, Dr. Manuel Ybanez, saved my daughter's life that night and has been an inspiration to us and many other families I've met. What would we do without these doctors standing by every night waiting for our sons and daughters?

But we are also part of the problem. My daughter was insured all of her life, then she turned 18 and had a job that offered benefits so she switched over. Then about 2 months prior to her accident she changed jobs and didn't get a temporary health policy. She was waiting it out; she had one more month until the new policy went into effect. A lot of young adults find themselves in this situation, they feel invincible. About 54 percent of 18-to-24-year-olds are uninsured as stated in US News article featuring my daughter and others in her situation. After six major surgeries and two helicopter flights, the bill was huge, almost $400,000 which will take a long time for us to pay off. We are so fortunate to have received the level of care needed to save her. Every single doctor and nurse we met exceeded our expectations.

My father is a surgeon and my mother an ICU nurse and due to this experience my daughter will begin school to become a Physical Therapist in the fall. They saved her life in so many ways, we are forever grateful. (Submitted 5/16/06)

icon - man speakingMay 24, 2006:

I am 60 years old. After a 30 year marriage and also working for 30 years of my life... I found myself divorced and then laid-off. I paid into COBRA ($500/mo) for a few months, and then looked for other insurance. I was denied by every insurance company for previous illnesses. In 2006, I experienced blood clots and a pulmonary embolism.
I was rushed to emergency and had no insurance. I applied for disability because it is impossible for me to stand or sit for long periods of time, due to Edema and pain in my legs. I have been denied twice. I pray every day that I will die in my sleep because I cannot go to the Dr. or hospital if I need to. (Submitted 5/18/06)

icon - man speakingMay 23, 2006:

I have had chronic pain for 12 years, and know a lot of people in the same boat. It is very difficult to get adequate treatment due in large part to ignorance and fear of addiction on the part of the public AND health care professionals. My pain management specialists has me on so tight a leash that I am forced to miss some work every month to come to his office because he thinks (or says he thinks) that he needs to do this to protect his license, since he is prescribing narcotics. This monthly visit is an unnecessary expense and time from work, as it is just a nothing in terms of actual treatment. The state of pain treatment in this country is deplorable. I have many years of experience working with people with all types of chronic pain, and I know whereof I speak. (Submitted 5/10/06)

icon - man speakingMay 22, 2006:

My wife and I had to get a divorce so she could get needed health care. We had two insurance policies but neither of them provided extended nursing care in our home or a nursing home when she was put on a breathing machine. Only Medicaid provided this coverage and now this service is being abolished in Missouri. (Submitted 5/12/06)

icon - man speakingMay 19, 2006:

My story is basically of my family. Today, I am the head of my household. My husband has become mentally ill and has not worked in over 4 years. We have gone through many set backs including almost divorcing. He served in the military for 16 years and retired from the Alabama National Guard. He would have gone to Iraq but his knees were bad, and he could not pass the physical. Today, he has no health insurance and we are trying to get him help through the VA. He needs a knee replacement on both knees and most of mental health services. I can't afford to put him on my insurance because the difference is for the employee ($15.00 per pay period) to ($300.00 for family). I make less than $27,000 per year.

I hate being in this situation, but we also need a home, car and bills paid. He is trying to get disability and even when that happens there will be a 2-year wait before Medicare. Even with our problems we still have the chance for VA services for him. Many do not have that option. I feel that he should have something in terms of Health Care because he worked for many decades and served his country. Now, he has to find all his medical records for his years of service. He has to write for them and we only hope that they can be found. In the mean time I try to make him comfortable and live in guilt because when he was able to work he made sure his children and wife were insured. (Submitted 5/12/06)

icon - man speakingMay 18, 2006:

I take care of my 89 year old mother's health care bills. She is covered by an insurance plan from the government, based on my father's employment. Every month, every single month, she is over billed by health care providers. I have written letters to the providers, explaining how they are over billing her, which result in that particular bill being fixed. The next month, the same thing, by the same provider, happens all over again. I have written to the government, which explained in the nicest possible way that as long as the health care providers are not trying to cheat them (the government) they really don't look into attempts to fleece the elderly. I had to fight for months to get the insurance to pay for a procedure (vertebroplasty) without which my mother would have been bed-ridden and in agonizing pain after she fractured a vertebra. The insurance company said there was "no treatment" for this, even though vertebroplasties have been done for decades. We finally won. Why is it so much time and effort and work? (Submitted 5/13/06)

icon - man speakingMay 17, 2006:

When I planned to retire from full time work, I found that I could not get individual insurance anywhere because I had a "pre-existing condition". I had a heart attack at age 53 with bypass surgery, and minimal medical expenses for 10 years since. My cardiologist sympathized. He told me he could not get insurance either since he had a small skin cancer spot that had been cured many years ago.

Why don't the anti-discrimination laws apply to "pre-existing conditions"? Why do the health insurance companies insure only healthy people? They may be following the law, but is the law in the public interest, or theirs? A disqualifying medical event can happen to anyone. HIPAA is such a costly effort to keep medical information private, but it doesn't seem to count when it matters. (Submitted 4/29/06)

icon - man speakingMay 17, 2006:

My boyfriend’s family all had cancer. Now he is 53 and refuses to go for a check up because he knows that even if they find something, we cannot afford to go on with the expensive tests and treatments to stop it. So we just wait and wonder and pray that nothing goes wrong. I know that there are millions of men out there that feel the same way. They do not want to burden there family with the high expenses and the chance of loosing there home so they just don’t go to the doctor. (Submitted 5/13/06)

icon - man speakingMay 15, 2006:

I used to be self-employed and carried an independent insurance plan for my family. Over the years our premiums continued to increase dramatically even though we weren't using services. When we called to inquire why that was, we were told that our "pool" had gotten more expensive and, if we wanted to, we could try to get into a new "pool" but we would have to have a physical exam and reapply. After some health issues, none of which turned out to be serious, the insurance company decided they no longer wanted to cover my "female organs". Well, I had always thought that my entire body was a female organ, not a male with ovaries and breasts.

The above comment is sassy but represents my level of frustration. I had paid premiums for many years and the moment I utilized some services I was pushed out. I eventually changed jobs and began working at one third the income so I could be insured through a major organization. I had to get rid of my business and let employees go. This whole scenario was a negative for the economy. I could have been making, and spending, more money all this time if I hadn't had to sell myself short for the insurance coverage. (Submitted 5/1/06)

icon - man speakingMay 12, 2006:

When I retired in May 2001 at the age of 42, I left behind a wonderful benefits package that included health insurance that worked. My children and I were added to my husband’s plan, which provided adequate coverage. Our problems began immediately. Every time I showed up for a medical appointment, I was told I did not have insurance. My husband’s benefits department showed that we did and continued to deduct his premiums. Due to administrative problems between the insurance company and my husband’s employer, this continued the entire time he worked there.

When my husband changed jobs in November 2002, we were to be covered in 90 days. Just 7 days before that, I had to have emergency gall bladder surgery. I HAD NO INSURANCE. With this new employer, our premiums started out at $350 a month in March of 2002. They increased every 3 to 6 months until the total for my husband, myself and 1 child was $1,250.00 a month in June 2005. At that time, we had to cancel the coverage for my son and me. My husband works hard and makes what we thought was a decent income. But there is not enough to cover the insurance premiums, or the medical expenses since we do not have health insurance.

I think all employers and individuals should be able to purchase health insurance at the same price. Our current situation is primarily due to the fact that my husband works for a very small company. Since I worked for a major organization, we have experience on both sides. It doesn't make sense that one company can provide great coverage at one price, while another can barely get coverage for their employees and when they do - the price is so high no one can afford to buy it. (Submitted 5/2/06)

icon - man speakingMay 11, 2006:

A few years back I was diagnosed as having a rare blood cancer. My physician put me in the hospital for the first round of medication in case there were any side effects. The therapy required the nurse to make regular checks on me as they gradually increased the rate of the intravenous medication. What should have taken about 4 hours but because of the typical short staffing that goes on in our area it took over 10 hours and would have taken longer had I not gotten involved. You see, I am a nurse. What ended up happening was the nurse left her recording sheet & blood pressure machine in my room. I began to take and record my vital signs and then increase the rate of the drug. The nurse would pop in every few hours to see how I was doing. As bizarre as this may sound it is not unusual for patients therapies to delayed or dragged out due to the lack of staff. In many cases this affects the efficacy of the therapy. As a nursing instructor today, I wish I could tell you it is getting better. Unfortunately it is not. As a nursing instructor in the hospital setting I see it all the time. (Submitted 5/3/06)

icon - man speakingMay 10, 2006:

After having health care insurance through a company plan, now my husband and I are both self employed. We never had a hospital stay or serious illness. For condition such as hypertension, we were both turned down for medical insurance. Both of our conditions are control by drugs. Now we pay $900 a month with a $5,000 deductible; it goes up every year. I am 58 my husband 60. How high will it go? Can we ever think about retirement or will we have to work just to pay health care premiums? (Submitted 5/4/06)

icon - man speakingMay 9, 2006:

I am a quadriplegic & I work full time. The biggest issues for me are the lack of well-trained community based services in our area. The pay scale for taking care of people with disabilities is at about the same level as a fast food worker or a janitor. I’m referring to Home Health Aides (HHA's), Personal Care Aides (PCA's), and the like. With out a pay scale that is an incentive to work and stricter guidelines on injury specific training, along with equipment use trainings. I don't ever see the quality or quantity of community based services improving. It is very hard to find people to work weekends and evening with proper training at such a low pay rate. I wish that I could give up my disability on weekends and evenings. That would solve all of our problems. But I can't. Please look hard at improving the community based services. (Submitted 4/26/06)

icon - man speakingMay 6, 2006:

I am a 47-year-old single parent that has been fortunate enough to have been provided health insurance through my employers all throughout my working career. I do pay a hefty premium, however it's worth it to know that whenever my family or I need quality health care, it is obtainable and readily available. The issue for affordable healthcare and coverage is not the insurance company's responsibility - it is the responsibility of the individual consumer as well as the provider of care - it pays to shop around and compare prices and quality just as you would when purchasing a new home or car. As a consumer, it pays to take charge of my health and that of my children so that preventable diseases and injuries are avoided. Our current system is not perfect and obviously doesn't work for everyone. The only bad experience with health insurance was 20 years ago when I chose to go with an inexpensive HMO in order to save money. My daughter required surgery at the time but the physician (due to financial incentives from the HMO) would not refer us to the specialist she so desperately needed. Needless to say, I dropped the HMO and elected a traditional Major Medical Plan and she received her much needed surgery. It was more expensive, but worth it. (Submitted 4/27/06)

icon - man speakingMay 4, 2006:

Our son has Tourette Syndrome, Obsessive Compulsive Disorder, Asperger Syndrome and Attention Deficit, Hyperactivity Disorder. We have had to fight long and hard to get medical coverage for him. In 1997, our health insurance was rated up to $1200 per month and this only covered 50% of his medical needs because the insurance company called his disorders "mental disorders" rather than physical. One year 30% of our income was paid for medical coverage and medical needs. People need medical coverage. Our system is a national disgrace. (Submitted 4/27/06)

icon - man speakingMay 3, 2006:

I am currently unemployed, and on COBRA. The monthly premium for my health insurance is now $397.00. At the very time that it is the most difficult to pay, I have to pay the most. Thankfully, I have the resources to do it. I tried to apply for individual insurance, but was told that since I take 4 medications on a regular basis, no insurance company would be willing to provide individual insurance. I am not in ill health, but the insurance companies only want to insure those in perfect health. It is very likely that I will find work on a contract basis, which does not provide benefits. COBRA is available for only 18 months. What will I do after 18 months? Our health care "system" is not a system. It is a cobbled together set of programs that have huge holes in it. We deserve a system that insures everyone, regardless of their employment status or age. (Submitted 4/27/06)

icon - man speakingMay 2, 2006:

When I planned to retire from full time work, I found that I could not get individual insurance anywhere because I had a "pre-existing condition.” I had a heart attack at age 53 with bypass surgery, and minimal medical expenses for 10 years since. My cardiologist sympathized. He told me he could not get insurance either since he had a small skin cancer spot that had been cured many years ago.

Why don't the anti-discrimination laws apply to "pre-existing conditions"? Why do the health insurance companies insure only healthy people? They may be following the law, but is the law in the public interest, or theirs? A disqualifying medical event can happen to anyone. HIPAA is such a costly effort to keep medical information private, but it doesn't seem to count when it matters. (Submitted 4/29/06)

icon - man speakingMay 1, 2006:

My husband and I were able to retire early -- he at 50 and me at 49. He worked his entire life for the same company. When he retired, our health care was free; now only 6 years later we pay about $350 per month. His former company has informed us that our premiums will continue to rise until we are paying 30% of the premium. Not only are we paying high premium costs, but our coverage gets worse each year. He may have been fortunate enough to retire at 50, but we are still living on a fixed pension. That $350 hurts and he has had to go back to work in order to pay it. This is certainly not our idea of the American dream! One of my daughters has a high deductible of $500 through her work insurance. Since she only makes $10 per hour, this $500 is very difficult for her so she avoids going to a doctor when she should and only goes when she is really desperate. This is not how health insurance should work for any one. (Submitted 4/16/06)

Read Shared Experiences from other months:
July 2006
June 2006
April 2006.


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