Stories

The human face of the health care system

Members of the community have shared their health care horror stories below.  Together we can bring about much needed health care reform.  We would like to make these stories history.  If you would like to share your story, please send it to:

Athena Godet-Calogeras
3629 Five Mile Rd., Allegany, NY 14706
Telephone & Fax: 716-372-3348
Email: athenagc@verizon.net

Please keep in mind that your story may be anonymous should you so choose.  We will publish only your story without reference to your name.  If you prefer to be known, we will be sure to note your name.  If you would like to include a picture, let us know.

My Story
by J.l., Allegany, NY

We moved from Florida to New York in September. Within a week I admitted both my daughter and my boyfriend to the hospital. She had a bronchial infection; my boyfriend had a stint left in him after kidney stone surgery. My bills keep adding up. Collection companies are always calling me. I don’t know what to do or where to go for help. I have been applying for Medicaid since September 2008.


My Story
by T.S., Allegany, NY

I’m 42 years old and the mother of four.

I have chronic bronchitis. I have never had a mammogram and have not had a Pap Smear for 23 years. Actually, I’ve never had a physical examination or any kind of medical test.  I work three part-time jobs: WalMart, as a custodian for a church, and I clean houses. But, I can’t afford to purchase health care. If I get very sick, I go to the ER.

My Story
by M.M. Olean, NY

I went through a divorce. Was only covered under my former husband’s insurance for a short time. I was forced to move from Ithaca back to my hometown due to the cost of living. I would have been in the red if I had continued to stay there.

It’s been very hard trying to find employment here, and one that is full-time with benefits. With no income coming in, and relying on family, it puts a lot of stress on a person. I do have some health issues that need to be addressed. But, without income I’m unable to get in to see a doctor.

My Story
by K.B., Belmont, NY

Medicare Part D has been a great program for many people. For a specific group, though it has been a financial disaster. I will call us the “prescription poor.” I joined this group last October. You are a member of this group if you are:

  1. Receiving Social Security for an injury or illness that no longer permits you to work or receive a modest pension;
  2. younger than 65;
  3.  paying for and using Medicare and Medicare Part D as your primary insurance;
  4.  having a great deal of prescriptions and
  5. having limited or no resources felt to handle the very high prescription co-pays and costs of uncovered prescriptions.

In my particular case I travel to Strong Memorial Hospital in Rochester, New York several times a month. The rising price of gas has greatly exacerbated my financial problems. I am desperate and at the point of having to move into a family member’s living room with my walker and breathing equipment. Otherwise I can find subsidized housing in the Rochester area that takes into account my medical costs and not just my gross income.

I have spent several months investigating programs that might help with costs only to find that I usually do not meet the requirements for assistance because of my gross monthly income is too high. On the other hand, my adjusted income is too low. I have pulled together a fact sheet with all the sources I have investigated and how to reach them. If you are a member of the “prescription poor” or know someone who is, this could a of great assistance. If you would like a free copy of this fact sheet, call me at (585) 268-5127 or email kbuff@localnet.com. Contact me if you are interested in urging the New York State Legislature to enact an emergency, short-term extension of EPIC for those under age 65 who meet EPIC’s income guidelines. Also contact me if you are interested in urging the US Congress to revise the Medicare Part D and/or Social Security Part D subsidy guidelines.

My Story
by S.N., Olean, NY

My husband has Medicare, Blue Cross and Blue Shield and the Prescription Plan. Due to costly medication he has reached the maximum allowed which is $1,000 the first stage of the “donut” hole.

My Story
by E.K., Olean, NY

I am a diabetic and taking eight prescriptions. At the present time I have Senior Blue coverage. The loop hole or so called “donut hole” is that I need to spend $4,000 before receiving assistance again. I was enrolled in the EPIC Program. However, I was denied enrollment since my income was too high. Since that time, my income has dropped making me eligible for EPIC once again. The paperwork is very frustrating.

My Story
by R.T., Bolivar, NY

I am nearly 71 years old and need to work 18 hours a week to maintain Blue Cross and Blue Shield. There is absolutely no way I can pay for Medicare, Co-insurance, drug coverage and co pays from the Social Security Check. Taking ten prescriptions some of which are very expensive and Medicare only “helps out” to $2,400. After that the subscriber needs to pay $3,800. How do most Senior Citizens come up with that amount of money each year? This plan is not working for Seniors who need multiple or expensive drugs. You can pay over $300 a month and have $729 to live on until the “donut” hole hits.

My Story
by J.S., Hinsdale, NY

After suffering from two strokes and severe TIA’s one drug is over $500.00 per month. As a result I needed to borrow money from family members to assist with the prescription and groceries. Some people I know have decided to take medication every other day because of cost.

The “Golden years are not golden years for anyone.”

My Story
by D.B., Olean, NY

I am a Veteran. In order to benefit from Veteran services that would provide full medical coverage I would need to travel to Buffalo, NY. I do not own a vehicle nor can afford one. As a result I am responsible for my health insurance. I do have dental insurance through AARP. However, the co-pay is 50%. Presently I own the dentist for a tooth extraction.

“This is a no win situation!”

My Story
by M.G., Allegany, NY

I am a senior citizen on Medicare and AARP Insurance. Under Medicare D I receive financial assistance with medications. However, each year I fall into the coverage gap. This year the gap was reached mid-summer. This means I remain in the gap paying $4050 out of pocket before becoming eligible for catastrophic coverage. At this point I would receive financial assistance again for medication.

My Story
by Anonymous, Olean, NY

I have been on Medicare for the last three years. I take ten pills each day. During the first year on Medicare I reached the donut hole in May and missed catastrophic coverage by $100. Since some of the prescriptions are now generic brands the “donut” hole was reached in September. Retirement savings are being used to pay “donut” hole costs. The $4,000 paid for prescriptions could have been used to pay for a much needed home improvement. “It is the principle of the thing!”

My Story
by H.S., Hinsdale, NY

When I was taken to the Emergency Room I was not seen by the doctor. Services were ordered for me that I did not need or want. I worked in Health Care for forty-seven years. The focus was: “The patient is the first priority.” This is no longer the case.

My Story
by P.K.n, Hinsdale, NY

I cannot afford health insurance. Too much money is taken out for family coverage. This benefit is not offered in my place of employment.

My Story
by C.S., Olean, NY

My insurance coverage was through my husband’s employer. When he turned 65 the coverage stopped. I needed to find insurance coverage on my own, The only affordable coverage for someone under 65 and having been retired for more than five years in New York State was with Independent Health. I paid $435 per month from August – December 2006. As of January 2007 the cost rose to $630 per month. I paid it until January 2008 when the cost went to $935 per month. This is TOO EXPENSIVE and I cancelled. I found via the television a provider (Cinergy) that was $219 per month. Although it is not a true medical provider, there is some discount coverage for prescriptions and doctor visits. Since I am healthy I need to stay healthy until I reach the age of 65.

My Story
by J.F., Olean, NY

In 2007, I lost my business. My wife had insurance through her work. Six months later, her job was eliminated. We have four children who were covered by Child Health Care Plus. However, my wife and I had no coverage. Since then, I have been working two or three jobs to make ends meet. My wife works for Community Action and has medical coverage with high co-pays. I still have no medical coverage and I need it (high blood pressure and high cholesterol). If I signed on to her coverage it would cost me $400 per month.

My Story
by B.H.

My name is Bunny Howell and I am “prescription poor!.”  I am 68 years old and still working 4 days per week and my husband is nearing 70 and working part-time as we are trying to carry our own weight. Also, we both get Social Security but we are not rich!

We are on Medicare Part D and for me the “D” stands for disaster. We do not qualify for any other plans as we are both working. I reach the “donut hole” each year in May and then am on my own the rest of the year or until I spend the required amount out of pocket which I believe is around $4,000 and then Medicare Part D kicks in again.

I have Crohn’s and take Pentasa which is $400 per month. In addition, I take breathing medications totaling $400 plus meds for cholesterol, migraines, etc. My total drug bill is about $1,000 per month which we are unable to come up with after reaching the “donut hole.” I am prescribed 8 Pentasa per day for my Crohn’s but am taking only 1 or 2 per day to spread them out longer. I had been able to get samples from my doctor up until two years ago but they are no longer available. I have written to the manufacturer several times to no avail. Thankfully, I have been able to get samples of the breathing drugs from my doctor. I am like a beggar and really don’t know how much longer they will be available.

Each month we have the co-pay for my husband’s meds plus about $200 for the ones I need and can’t get samples of. Medicare Part D is working for him and we are thankful his meds are not a concern as of now.

Sorry this is so lengthy by the bottom line is this whole program is a disaster. I think EPIC should be revised for people my age also.

My Story
by R.B., Saranac, NY

My younger brother Randy, a 40 year old smoker who is not overweight, worked for many years at AMC in Olean, NY. His wages were sufficient to take care of his essential needs and bill: food, shelter, electric, car insurance, heat, etc. For many years Randy lived with uncontrolled high blood pressure. When I say high I mean extremely high 200/100 was a typical reading. Being one of the thousands who live in the insurance no-mans-land; earning too much to qualify for programs like Fidelis, and not enough to purchase private health care, Randy was unable to pet proper medical care for his high blood pressure.

In early 2008 Randy told me that he had begun to urinate blood and one morning had found a gelated mass the size of a quarter in his underwear. After discussions with Randy and our sister Cammie, it was agreed that Randy would go to the doctor and that we would be sure that it was paid for. On his initial visit Randy’s blood pressure was 200/100. He was given a prescription and was told to come back a week later. On May 12th while at work Randy began having severe headaches, to the point that he could not stand. An ambulance was called and he was transported to Olean General Hospital where he was diagnosed with a brain stem stroke. He was intubated, placed in a medically induced coma and prepared for air transport to Millard Fillmore Stroke Center in Buffalo.  We were told that he had a 3 to 5% chance of survival and that if he did live he would be in a vegetative state for the rest of his life.

Randy spent a month at Millard Fillmore Hospital before being transferred to Buffalo General Hospital to begin rehabilitation. He has been in Buffalo General Hospital since June 11, 2008 and will be transferred to a sub-acute rehabilitation facility to continue his path to recovery. While we believe that there is a full recovery in Randy’s future, the road to that recovery will be a windy, bumpy, very slow and very expensive.

We are grateful to God for his grace and to the medical community for their outstanding care. However, my best guess is that Rand’s healthcare costs currently exceed $400,000 and will continue to climb as he continues to heal. I do not think there is any blood pressure medicine in the world that costs $400,000. Is there?

My Story
by L.L., Franklinville, NY

I do have my own Healthcare problem. We had received Medicaid several years ago when my husband was having health problems. At the time we were self-employed Dairy farmers. The work was more than we could handle when he was going through his treatments. We sold much of our heard and he took classes at BTTI for truck driving (Class A). He recouped as he was taking classes and he soon got a job at a local large dairy farm. Of course he got the joy during their peak season of harvesting corn. Medicaid contacted us, saying that he had gotten Medicaid illegally and we owed for three months of Medicaid totaling over $2,400. The head of legal at Social Services reviewed the situation and decided that my husband was eligible for September and November but not October because that was the peak month of income. Previous to my husband getting his other job, they took our income information on a yearly basis because it was self-employment. My argument with them was that working for another farmer is seasonal employment. You can have 60 hours a week at one time of the year and at other times you could have no work at all. They still felt that is was reasonable to have us report our weekly income once a month. If our income was too high in a given month we would be considered ineligible for Medicaid. With my husband’s medical problems (Diabetes, Atrial Fib Heart problem and Chronic Leukemia) he needed to have medical coverage. Fortunately, his employer did get him medical coverage through his work. It changed in the last month to another provider that will cost us more for a doctor visit but at least he has coverage.

I have to buy the Healthy New York which does not cover Dental so I have to apply for Hill Burton for the Cuba Dental Clinic. This calls for a Medicaid denial first. To get a Medicaid denial they have to have all your information such as income information for their files. This includes Life Insurance, lank accounts, autos, income, etc. They even ask if you have sports equipment! I thought this was rather obnoxious and time consuming for us as the client as well as a real pain in the pocket for tax payers who basically pay for these people to harass people unnecessarily.

They were actually smiling when I told them that what they were doing was ridiculous! All I wanted was a denial so I could get the Hill Burton for Dental work. I didn’t want Medicaid. It seems that the people who need it most cannot get it and the ones that get it should not get it at all. I recently got an e-mail stating that people who get public assistance should have to be drug tested to be deemed eligible…people who work for a living have to consent to random drug tests! I agree.

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