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San Francisco, CA
Mother Leaves Critically Ill Child's Bedside to Fight With HMO; Worries About Future Care. (Told by Katherine's mother, Dr. Julia A. Hallisy)
In early October, 1989 our second child, Katherine Eileen, was born. I was an associate in a wonderful dental practice located five minutes from our new home. I can still remember thinking there was little else we could want or need.
By mid-October, 1989 life as we knew it came to a screeching halt. Katherine, our chubby five month old daughter, was diagnosed with bilateral retinoblastoma and possibly a brain tumor as well. When I remember those days I visualize a blur of doctor visits, the terrified faces of family and friends and the paralyzing fear of all the unknowns awaiting us. We thought our only struggle would be to keep our daughter alive. We had no idea that many days our greatest battle would not involve cancer cells but dollars.
While we dealt with our daughter's diagnosis on an emotional, physical and spiritual level, our HMO moved into action to evaluate her rare disorder and their ability to treat her "in house." This resulted in some delays in treatment while her physicians made dozens of phone calls and sent numerous faxes and letters. After her "out of plan" services were authorized the HMO waited as long as nine months to pay her bills. We were receiving threatening collection letters from a multitude of sources. Many even refused to deal with our HMO and requested that we pay for the services ourselves. The issues were finally resolved after we made a personal visit to the main office of our HMO and threatened to make a complaint to the State of California insurance commission.
There were many months that my day began phoning the HMO to check on the status of claims and phoning providers to assure them that payment would be forthcoming. As you can imagine, this greatly infringed on the time I could spend comforting my daughter from the pain and side effects of radiation, chemotherapy, bone marrow aspirations, bone scans, spinal taps, etc. Dealing with childhood cancer is an all-consuming responsibility. In time, I learned to deal with the HMO directly and aggressively. I knew I had to be the tireless advocate my child needed. I regularly mailed the director of our medical group pictures of our daughter with updates on her progress. I was determined that he was not going to be able to think of her as a nameless, faceless medical condition.
Our daughter is now seven years old. She has won her war against cancer the hard way-battle by battle. The cost was the loss of much of her early childhood, the loss of her right eye and orbital tissues and seven reconstructive surgeries to date. I worry about her future health and her chance to have quality medical care for life. When the CEOs of every health maintenance organization have to answer to their members instead of their shareholders there may be hope.