Occupation:: IT Desktop Support

Through 2005-2006 I went to two doctors through my health plan complaining about pain, numbness in my hands, arms asking for an MRI to be done on my neck. Every time that I asked and explained the condition requesting an MRI I was denied service in this area. Even attempting to change doctors while within my network I could not get me the proper care as a decision had already been made and put into my records that the pain, numbness was arthritis. I could not get the issue readdressed by any doctor through my provider.

I had a prescription from a doctor outside of my network from late 2005 requesting that I have an MRI. That request was also denied and the prescription was kind of tossed back to me while the doctor chuckled that he had already made a diagnosis and that my continued requests were a joke to him. Did I mention that changing doctors within my network still didn’t get me any help.

I started having issues walking and in 2012 I was sent to a Neurologist who did an MRI. I was told that the cervical spinal cord was pinched in 3 places in my neck, that if I fell or was in an accident I would become a quadriplegic and I had to have surgery done as soon as possible.

The refusal of services in 2005 almost cost me my life and the lack of care on the part of the doctors has complicated my medical issues since 2005, issues that will continue to last for the rest of my life.

When I needed a proper diagnosis of my medical condition, my medical provider failed me time after time. I blame myself for trusting them as I have continually heard of problems that others had with the same provider but you never really understand until it happens to you.

I will be disabled for the rest of my life as a result of the care that was denied me. Even with the American Disabilities Act I doubt that anyone will be willing to hire someone who can only walk a few feet at a time, who’s arms, hands don’t work all the time, who can’t hold their head up for any length of time without a brace.

I can only pray I find medical service that will provide me with a doctor that can attempt to do what my health insurance company would not try and remove the bulging disks without damaging the spinal cord before it is too late.

Occupation:: Desktop Technician

On January 2, 2011 my daughter was a passenger in a vehicle that was involved in a head on collision. The driver who caused the accident (icy conditions and speeding), was pronounced dead at the scene. The driver of the car that my daughter was traveling in only had superficial injuries, however, my daughter suffered many life threatening injuries. The list of her injuries:

• Both ankles broken
• Spiral fracture in left tibia
• Bowel rupture (which required over half her colon removed)
• L4 and L5 broken vertebrae
• Gallbladder damaged and removed
• 2 abdominal muscles shredded (which required removal)
• Torn Aorta at the T10 Level, resulting in a stroke in her spine rendering her paralyzed from the T10 Level down (about belly button level)

She is actually very fortunate to be alive today, if her aorta had gone through another layer and her blood did not clot, she would have bled out in a matter of minutes. The accident happened within an hour of leaving to go back to school. She was brought back to the hospital, about a 35 minute ride from where the accident happened, and was sent to surgery almost immediately. She was not able to receive any medication at this time, because they did not know the extent of the damage. Hospital cost (approximate): $25,000.00. This was for the emergency room, staff and operating room. This did not cover the doctor costs or the anesthesiologist. Approximate cost: $5,000.00. Insurance information was gathered at some point, but since I was in shock at the time, I cannot recall when and if I gave this information or if my husband did.

About 4 hours after her initial surgery to repair her bowel, both she and I were life-flighted to a hospital about 300 miles north at a cost of $41,000. That was just the cost of the plane, not the ambulance to get us to the airport, not for the pilot of the plane and not for the two medical staff members who flew with us in case of any emergency.

As soon as we arrived at the hospital, my daughter was immediately put into a drug induced coma in order to help with her healing process. She had a breathing tube because of the medication she was receiving; she was not able to breathe on her own.

During the first night I was at the hospital, the most important question that was asked by me regarding my daughter, was not anything other than if she had any medical insurance? Car insurance? Did I know if the driver of the other vehicle had insurance? The last thing I wanted to discuss with anyone there was her health insurance – I wanted to discuss HER HEALTH. I want the reader to understand, it was still touch and go whether or not she was going to even survive the night and it felt the only care that the hospital had, was whether or not my daughter was going to be able to pay for her stay.

That evening, in the Intensive Care Unit, I began to get a list of doctor teams that would be responsible for my daughter who included a stroke team and a kidney dialysis team. It wasn’t until later that I would find out the reasons for these teams. Not only would my daughter not be able to walk again, but she may have had a stroke other than her spine. There was a small clot found in her brain, plus, because the body does strange things after immense trauma, she was not capable of filtering out potassium from her blood stream, so there was a concern, that if she could not start passing urine, that she would have to be put on dialysis. Fortunately, after about a week, it was determined that she did not need either team as her kidneys began to function correctly and the clot on her brain was from a possible older injury.

During her stay at the hospital, she had over 15 surgeries, one to remove her two shredded abdominal muscles, one to put rod stabilizers in her back, one to remove her gallbladder, one to repair her tibia, one to remove more of her colon and the rest were to clean out her wounds that could not be closed up due to contracting the C. Difficile virus, which caused her abdomen to swell.

After one week they finally took my daughter out of the drug induced coma. My daughter stayed at the hospital for one month, almost to the day. She received physical therapy maybe two times during her stay.

Hospital cost: $385,000.00

Various Doctor Costs (even for those doctors who never came to her room, but looked at her chart): $100,000.00

Physical Therapy Costs: $35,000.00 (again only for two visits and stayed only for an hour)

After the doctors finally felt that she was well enough to move locations, my daughter opted to be placed in a facility near the university that she was attending because there is no rehabilitation center where I live and the closest one was about 150 miles away which required me, as her parent to drive in treacherous conditions.

Cost to travel to rehabilitation hospital via Ambulance: $1100.00. This did include the driver and helper.

When we arrived at the rehabilitation hospital (RH), again, I was inundated with questions regarding her insurance coverage. Within three days it was determined that she was not strong enough to stay at there, so she would was moved to an acute care hospital (ACH). Again, the insurance question came up and I had to give forth the information. It appeared that her care was secondary to the question of the insurance coverage. My daughter stayed at ACH for 3 months at a cost of $19,000.00 a week. The cost was the same at RH, where she stayed for an additional 2.5 months. The total amount of her stay at Rehabilitation hospitals: 18 Weeks @ $19,000.00 = (approximately) $342,000.00. This did not include her doctor costs (but did include physical therapists and occupational therapist), which included two doctors for her care: Approximate cost: $51,000.00.

Soon we found out the minimum cost of being paralyzed and the equipment she would need to survive on a daily basis.

• Wheelchair and accessories $6,400.00 (mostly covered by insurance and some items not needed, but foist upon her)
• Shower chair: $400.00 (covered by insurance)
• Bladder/Bowel supplies: $120.00 (one month supply covered by insurance)
• Wheelchair ramp: $1,856.00 (NOT covered by insurance although she couldn’t get into her house without it).
• Bone Regenerator: $300.00 (covered mostly by insurance, used two times)
• Higher Toilet: $250.00 (not covered by insurance)
• Modifications to her house: $5,000.00 (not covered by insurance)
• Service Dog and training: $1,000.00(training done by family and volunteers of the community, not covered by insurance)
• New Mattress to avoid bed sores: $3000.00 (50% covered by insurance)
• Car Modifications: $900.00(not covered by insurance)
• Accessible car: $25,000.00 (not covered by insurance)
• Handcycle: $6,000.00 (NOT COVERED BY INSURANCE)
• Dental Work: $1,500.00 (covered by insurance)

After my daughter finished her stint with the Rehab Hospital it was found that the rods in her back had broken. She needed to have surgery on her back again to fuse her spine, since the initial hardware was doing more damage.

Total Approximate Cost (Hospital Stay, Doctor and Surgery): $80,000.00

Total Approximate Cost: $1,114,606.00

My own loss of wages and time will never be compensated for. I was fortunate that I had over 4 months of sick time that I was allowed to use it (under the Family Medical Leave Act) in order to be there for my daughter, but if I had not had that time, my wage loss would have been such that my daughter would have had to be without someone near her so that I could maintain my own household.

Other expenses I endured was living in another location for a full month, including the gas to bring my car there , food and living expenses, plus maintaining a household for my husband and our son. This was well over $2, 000.00 for the first month. Then the traveling to her location, back and forth over a 4 month period which at minimum has cost me over $5,000.00, which does not include the stress on my family and me and my own medical costs associated to the accident.

My daughter was very fortunate to have the level of insurance that she did going into this accident, however, I began to wonder, if she did not have the insurance coverage that she did, would she have received as good of care. On the other hand, I began to wonder, because she did have such good insurance, how much of what was done was superfluous?

Now for the big shocker, as I am sure, you the reader are aware, if my daughter had any chance of receiving a settlement, that money WOULD NOT towards the care of my daughter. Instead, the insurance companies had first rights to any settlement money. I was astounded to learn this and to this day I am still unsure of the reasoning. I, like many others, was under the impression, the reason we pay for insurance is for the off chance of such a tragic, catastrophic accident like this was to occur, that I as a paying customer would be entitled to be covered and that any monies from a settlement, would help to go for my living expenses.

My daughter, at the age of 25, will find it very difficult to find a job that can accommodate her (regardless of the American with Disabilities Act, prejudice still happens), and she will have an even harder time pursuing her career choice, of being a raptor biologist, which she was studying for when her accident happened.

Soon after my daughter was in the accident, my senator was on a board, talking about changing the benefits for Medicare and Medicaid, for which my daughter, was not eligible until April 2013 (Most individuals do not know you have to wait 2 years after becoming permanently disabled in order to be eligible for Medicare) . However, the response I got from my senator, much to my dismay, was a typical form letter. A form letter to a parent, whose only hope is to see her children succeed in this world and which one little accident has cost so much financial trouble, not only to my daughter, but to myself.

It is time for our country to get on board with the rest of the world. We are the richest country and yet we treat our citizens like they do not have any rights. It is an awful shame that we have come to this and that I, as a working citizen, get a form letter from my employee (the senator yes, is MY employee), that too bad, it is a burden on our country.

I have done everything right and everything in my power to make my daughter less of a burden on our society, but why should she be considered a burden? Someone seeking an entitlement which is not an entitlement but something we as citizens pay in taxes for the safety net, when it was not her doing that she is now a disabled person?

We need universal health care. We need to respect our children and our elders and care for them without worrying about how we are going to pay for it, if we can pay for it. We need to take care of our own health and stay healthy instead of waiting until something bad happens before we see a doctor. We need to not worry, such as my daughter is, that one bad thing happens in our life that we will face financial trouble and have to file bankruptcy, or lose our home because the medical bills are so astronomical. Imagine if my child did not have health insurance she would be over $1,000,000.00 in debt at the age of 25! If we had universal healthcare, this would not even be an issue. A mother should not have to worry about what insurance she has, or if she has any, while her child is fighting for their life!

For all people…this is a fundamental right. It is my right, my daughter’s right, my family’s right, everyone’s right to have full access to healthcare.

Occupation:: Disabled

I am writing this letter to tell my story about the short comings in healthcare provided by Medicare. Both my wife and I are disabled and on Medicare. The medications we are prescribed are teratogenic, meaning they are known to cause fetal deformities. In short, we don’t want to produce a fetus that is not compatible with life. We wanted to have a baby and have tried to change medications to less risky medications, but for various reasons we are unable to successfully move to a drug that poses little to no risk to a fetus.

Medicare does cover birth control pills which are wonderful for disabled women under 35, but the compassion toward people in our condition ends there. We are over 35 years old. Currently we have to use the least preferred method of birth control because Medicare does not cover sterilization procedures for men or women.

Medicaid will cover sterilization procedures; however, we don’t qualify for Medicaid because before my disabling event I was upper management in my career plan making almost 8 times the poverty level. Today, thanks to our previous income level, we are just above the limits to qualify for Medicaid. One loophole many people in our situation consider is divorce.

Divorced my wife’s income would qualify her for Medicaid. But why should I have to break the binding contract I have with my wife so we can obtain better healthcare? For me this is a moral issue with many layers. In my opinion, the most moral and compassionate way to deal with this is to cover procedures supplied by Medicaid at the 80/20 that is already covered by Medicare.

Finally, I’d like to point out just how exclusionary this seems to me. Medicaid’s primary consumer is not the disabled but the poor. As the policies currently stand, our society seems to be saying for poor people sterilization is a medically necessary procedure but for disabled people, who are often prescribed teratogenic medications, it is not. This places the disabled person at unnecessary risk of a pregnancy with a strong chance of very poor outcome for fetus, mother and family. Who wants to find themselves coping with medication caused miscarriages or birth defects and coping with a chronic debilitating disease at the same time? No one, that’s who. It is time for the federal law makers to get out of my wife’s uterus and allow us the freedom to pursue happiness in our bedroom just like able bodied people do: with health insurance that covers the same procedures available to everyone else at little to no cost.

Occupation:: Retired

In January 2012 I experienced a terribly painful flareup of gout in both my feet and both knees. The pain was unimaginable. After a few days of sitting on the couch unable to move, eat, take pain medication, and the like, I contacted an emergency vehicle to transport me to the closest ER, St Francis Hospital in Federal Way, WA. I had been an outpatient at this facility in the past, and had always been covered for health care costs by Medicaid, so I didn’t have to pay any hospital bills. I was confident in the ability of the staff to take care of my situation. Shortly prior to this incident, my Medicaid was cancelled and I was to begin receiving Medicare, but was not doing so at that time. (I was in between Medicare and Medicaid, and as such, I had no insurance coverage). After spending about a day and a half in the hospital being treated for chronic gout and anemia (as I could not feed myself for several days due to being immobile), I was released to begin my post-hospital recuperation (which consisted mainly of drinking lots of fluids, taking pain medication, and rest). After a few days I was much better and essentially pain free.

About one month later I received in the mail a highly-detailed and comprehensive bill, in an amount in excess of $22,000! As this incident happened about a year ago, I continue to receive bills from this hospital system, and I simply cannot afford to pay them. (In addition, I received bills from the Ambulance company, another $1000+.) I currently am receiving Social Security Disability in the amount of $950 per month, and although I am now on Medicare, I have not needed to use it at this time. I am very dismayed (but not surprised, however) at receiving this $22,000 bill.

If the US had Universal health care these costs would be covered, but apparently those in power in the US are simply to greedy to allow such a logical, humane system to be implemented here. I’m not worried so much about myself, but about those who will, through no fault of their own, through accident or disease, go through a similar horrendous experience with our nation’s ‘health care’ system. I am particularly concerned with young people, who are likely to be saddled with health care debt for the rest of their lives.

Occupation:: Housewife

I am writing out of concern for my daughter-in-law.. She is very sick with a lot of pain. She and my son moved to this small town and the children have Medicaid but for some reason they deny her Medicaid. Only the children are allowed Medicaid in this town. She has tried to work and cannot work due to her health issues; extreme back pain and seizures. I hope you can figure out some positive information so I can tell her what to do. Thank you very much for your attention to this matter.

Occupation:: Georgia ICWP Client

I am a recipient of the Georgia ICWP program that was just informed that my home healthcare for a quadriplegic will be suspended until a meeting is on 11/05/12 by my case manager. Can this be allowed? There are other individuals experiencing the same neglect in Augusta, GA from CHH. I won’t be able to eat or take my medication. I have no family or friends to help me with this matter. What is my best option?

Occupation:: Disabled but not legally

I am a 50 year old woman, worked all my life, worked hard and long. I have become disabled to work and my body has turned against me. Every time I go to the doctor they find something else wrong. Called SS yesterday and my case won’t be looked at for another four months if then, then after the hearing if I get approved it will be another 4-6 months. I believe with my whole being that they hope I die before. Now this money I have paid in all my life, and allowed my government to use as they say fit with the trust it would be there when I needed it.
I have lost everything I worked all my life for, sold some for the price of a medicine, most I do without, and in doing so my health has come to a chair alone all day and all hope lost. Another year and maybe then nothing.
Surgery now could prevent more damage, but that is never gonna happen.
No help, no where to turn. I do get food stamps and even though my pride was hurt, I think God for food in the house.
I went to see a doctor the other day, and he couldn’t believe the medical or lack of that I received. he said,”not in America, have we got this bad?”.
Right now I am a piece of paper on someone’s desk, another huh are smart remark as they look at yet another file, never taking the time are having enough backbone to look at each file. Just another nothing to them. This number has a name, I am a mama, grandma, sister a friend and a daughter. And a wife. I am a life, one that because of the actions of my government will probably end. I am saddened and angry, I can’t work anymore, and I can’t get help. Its wrong, I didn’t want to end up like this, but I have.
Something should be done for people like me, and I would stand and shout if someone would listen. Women are the backbone of this country and when we lose our health our faith and our lives because our country turned its back on us!!!!Our kids are gonna remember, they will never trust again, and for very good reason.
Women between the age of 40-60 need help too…Don’t let us forever be thrown under the bus, just a crumb from the rich man’s table.
If anyone reads and understands the reality of no health care, the terrible outcome of it…maybe it would stop. When you lose your job, most lose their coverage, without a job how to pay premiums?????

Occupation:: MD

The new Medicare reimbursement rules for hospitals began last week, Oct. 1,2012. Hospitals are anticipating that they will not be reimbursed for re-admissions for Medicare patients. They have taken some very disturbing steps so that they will not incur these admissions and suffer financial losses. Northern California hospitals have engaged with individual hospice companies, and hired employees who now will have salaries paid by both the hospital and the hospice, to get hospitalized Medicare patients to sign up for hospice before they leave the hospital, at the time of discharge. Patients who have been diagnosed with significant new cardiac conditions or new cancers, etc. are being approached by these new employees prior to discharge, and induced to sign up for “hospice” so that there is no chance the hospital will be burdened with the cost of any readmission, because the person will be committed to “death”. These are patients who have just been admitted to an acute hospital and have just undergone acute medical care, and have not had adequate opportunities to consider the ramifications of their new medical conditions with families and friends or their own doctors. There is obvious “conflict of interest” with the hospitals and hospices who are given notice of the patient’s conditions, through access of confidential medical records, and utilizing this information to induce debilitated and distraught individuals into decisions that may not be in their best interest. This is very unethical and disturbing.

Occupation:: Inventory Control Management

We need to be more like Canada.

Occupation:: Adjunct Instructor – English

My problem is that I can’t afford healthcare. I have two small children, and I work part-time. My job does not offer me healthcare because I’m not full-time. My husband’s job does not offer affordable insurance. To have us both covered, it would cost about $170.00 per week, and he only makes around $500.00 per week. We simply can’t afford that with bills, student loan repayments, rent, and food.

Working more is not an option for me know because I have two small children to take care of. I do not qualify for any type of federal or state help with my insurance because I make too much. Perhaps I could quit my job and qualify, but I don’t want to do that. I hope to have a full-time job in a few years.

What do I do? Do I pray I don’t get sick until I do get healthcare? Why do people who don’t work and pay taxes(i.e. spouses of those who have great insurance or the unemployed) get healthcare when they don’t pay taxes?

The system is inequitable.

If we listen to Ryan and Romney, more and more cuts would take place to the social safety net. Will Obama’s plan really offer me a choice? Healthcare is not a privilege; it is a human right!