Contents:
Case Examples
Americans Speak Out

“Roger” (not his real name), age 49 of New York City, has had cerebral palsy for most of his life, and also has a heart condition for which he had bypass surgery a year ago. He has been living independently since age 18 and is able to move around his apartment despite difficulty walking. In the past, Roger used a power operated vehicle (“POV”) to travel in his community, but now the POV is broken. Medicare will not provide coverage for a new POV because he does not need it to get around his home. As a result, he is completely homebound with the exception of taking meals with his mother, who has an apartment on the same floor.

Roger misses getting outside and being active with his synagogue and hobby of photography. Roger owned three POVs in the past that were covered through supplemental insurance, but the insurer no longer covers POVs. Today, he has Medicare and supplemental insurance through his mother’s retiree policy and lives on Social Security Disability Income (“SSDI”) benefits. Roger is deeply troubled by Medicare’s unwillingness to cover a POV which would help him get back to the community and lead a fuller life.

“Mary” (not her real name), a 64-year-old African American woman who resides in Washington, D.C., is eligible for Medicare because she has multiple sclerosis. Mary is not able to move the lower half of her body and has been unable to walk or stand since 1992. She lives independently by navigating through her home in a power operated vehicle (“POV”), and using a “trapeze” bar to get in and out of bed, a chair lift to reach drawers and shelves, and grab bars in the bathroom. Mary was diagnosed with multiple sclerosis in 1986, but continued working as a supervisor at the IRS until her medical condition prompted her to retire in 1988. She also has bowel and bladder problems.

Mary lives on a government pension of $25,000 a year and has federal employee retiree benefits to supplement her Medicare coverage. She takes six medications for which she pays about $1,200 each year in co-payments. Because of narrow Medicare coverage, Mary has exhausted much of her savings to modify her home so she can live and function independently. For example, in June 2002, she paid $300 for full-length bed rails that her doctor prescribed because she was falling out of bed due to muscle spasms. Medicare denied coverage for the rails because regulations require that this equipment only be rented, even though no companies in Mary’s area rent bed rails. Mary has also paid thousands of dollars to have grab bars installed in her bathroom, to purchase “trapeze” bars, and to purchase a humidifier to address side-effects from medications that prevent her from sleeping at night. The POV that Mary is using does not have the kind of seat that her rehabilitation specialist recommended, but Mary compromised because Medicare would not have covered the proper model. Consequently, she frequently has pressure ulcers and is pursuing a special seating system on her own.

Americans Speak Out

Anonymous Consumer: “I have post polio syndrome. I use one of two ventilators 24 hours daily, seven days weekly: one is on my wheelchair and the other is by my bed. The ventilator by my bed I use when I sleep. I refer to this ventilator as my "primary" ventilator. The ventilator on my wheelchair provides me with independence: with it I can go to work, maneuver around my home, and go shopping at the mall. I refer to this ventilator as my "backup" ventilator because should my primary ventilator fail, I can use the ventilator on my wheelchair. Without it I'd be bed ridden.

“Now, all ventilators eventually fail, and mine are no exception. If my primary ventilator should fail, I must get to my backup ventilator within five minutes or else I'm dead. Similarly, should my backup ventilator fail, I must get to a ventilator within five minutes. I've used two ventilators for years.

“But then (In January of 1998,) Medicare began denying me coverage for my second, vital backup ventilator. I had my doctor write a letter of "medical necessity" to Medicare, but again I was denied coverage.

“Can you imagine the sleepless nights I spent worrying that my independence had ended? Can you imagine my worry that my life might end because Medicare wouldn't cover the cost of my ventilator? The culprit here, should either of these things happen, would be Medicare.

“Every month my ventilator supplier must appeal Medicare's denial of coverage. My life, therefore, is in limbo from one month to the next. In effect, since 1998, Medicare has terrorized me. Will the terror ever stop?”

Anonymous Consumer: “I have been using wheelchairs since 1944. My doctor submitted a request to Medicare 1 ½ years ago for a new chair and the request was denied. In addition, I was denied the repair of my old chair. As a result, I have been using an uncomfortable chair. How long must I suffer?”

Anonymous Consumer: “Toward the end of her life my mother received chemotherapy and Medicare refused to cover the cost. Even after I went to my congressman Medicare still refused her coverage. What could I do but pay for it myself? So I did pay for it myself, and as a result my finances were drained.

”It's too late, of course, for my mother, but what about for me? I am taking chemotherapy medication, one of the side effects of which is hearing loss. Now, Medicare refuses to cover the cost of hearing testing or for a hearing aid for me.”

Anonymous Consumer: “I use a machine to pump air into my lungs when I sleep. Without it, I would die. The machine has various pieces of equipment, including headgear. Medicare has repeatedly denied me coverage for new headgear. I was told it wasn't "medically necessary." My doctor then submitted a letter to Medicare documenting my need for the headgear, but again I was denied coverage. Without my air pump I die! I had to have my doctor submit numerous letters to Medicare before coverage for new headgear was approved. Is this health insurance?

“My question is, why? Why is it so difficult for me to get to the coverage I so desperately need?”

L.H.: “I have a student who is currently wearing two hearing aids loaned to him by our school system. His mother works two jobs and cannot afford to buy him his own hearing aids. He has been in my special education class, for students with mental retardation and multiple disabilities for 2 1/2 years. This is his first set of hearing aids. It is my opinion that if he had had hearing aids all along he would not be in such a restrictive environment, but the lack of hearing aids had a large effect on his language development and learning to read. I am fearful of what his future will be like when he leaves the school system in a few years and does not have access to the loaner hearing aids. His skills have already been compromised and with out hearing aids in the future his options will be minimal.”

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