In October of 1989 our second child, Katherine Eileen, was diagnosed with malignant tumors in both eyes - she was five months old.

You have to be a quick study in the intricacies of your HMO when you are sitting in a doctor's office receiving a diagnosis like cancer. The ophthalmologist who diagnosed our daughter's cancer wanted Kate to see another specialist - a pediatric ophthalmologist. He requested an emergency authorization from our HMO over the phone and with a verbal OK we drove to see the specialist. That day began an ordeal with HMO's that lasted a decade.

The person who gave the authorization did not follow the correct procedure and the HMO would not pay these bills for months because they said we had gone "out of plan" without their consent. At the time, this particular health plan had no pediatric ophthalmologist in their network and wanted us to see an adult ophthalmologist who was part of the plan. To the credit of the doctors involved they insisted that Kate needed to see a pediatric specialist and the HMO relented.

We soon faced another insurance challenge - getting the HMO to actually pay our medical bills. Kate was undergoing daily general sedation and radiation treatments. We were caught in a whirlwind of, scans, blood work, doctor visits and mounting bills. Some of our daughter's medical bills had not been paid for 8 months and the providers were becoming impatient. We started receiving calls from both the doctor's offices and from collection services.

Now I was put in the position of being the mother of two, a health care professional with my own business and a free employee for my HMO. For months I acted as the intermediary between the providers and the insurance company. The doctor's offices would let me know what bills had not been paid and I would call the HMO to determine the cause of the delay. I would then notify the doctor's offices if rebilling or other information was needed. I spent 6-8 hours a week for months on end facilitating payments.

Within the year, Katie's aggressive cancer had returned and our doctor wanted us to see a retinoblastoma specialist in Los Angeles. So we again started the grueling authorization process. The doctor in charge of the medical group wanted reassurance that the treatment would be successful. Of course, no one could guarantee this so he held off on giving his authorization. We left for LA without an authorization in hand. My mother took over the task of waiting by the phone and we were relieved when she finally called with the authorization number. When we arrived at admitting the clerk informed us that our daughter's surgery would have to be cancelled because the HMO had not faxed the necessary paperwork and no one was answering the 24-hour number to verify authorization. The precious number I had written down in my wallet would not suffice. I insisted that there had to be a way to proceed with the surgery. The clerk said we could make a substantial payment on account to guarantee that the hospital would be reimbursed. I ran to my husband and told him to give me his mastercard and visa. I found my mastercard and visa and gave the clerk four major credit cards to guarantee payment. We were fortunate that our life circumstances made it possible to immediately produce four credit cards. I know many other families would have had to cancel their child's surgery and possibly wait days for another opening in the doctor's schedule.

Within six months, we faced yet another reoccurrence of Kate's cancer. The treatment consisted of more radiation and two years of chemotherapy. During the first course of chemotherapy our oncologist wanted to give Kate two new drugs called Zofran and Neupogen. These drugs are commonly used now but they were new in 1991 - and expensive. The case manager at the HMO decided that Kate would have to go through a round of chemotherapy without the drugs to see how she would do. At two years old she would have to prove to the HMO that her little body needed help to make it through 35 rounds of toxic drug therapy. Within days of receiving the chemotherapy, Kate developed a fever, fatigue, pain and severe nausea that led to dehydration. She was hospitalized for almost a week - at a high price physically, emotionally, and financially. There is no doubt in my mind that patients are best served when their physicians are making the decisions about their care.

In 1997, Kate was diagnosed with bone cancer in her right leg. The cancer was also in the lining around Kate's brain and she began to have severe nausea. The doctor ordered Zofran to stop the nausea but Zofran was only approved by the HMO for nausea induced by chemotherapy. The HMO wanted the doctor to use Compazine, a much cheaper drug. Kate had been given Compazine in the past to fight post-operative nausea and it was ineffective and caused her to have hallucinations. Our oncologist had to fight with the insurance company to be able to use Zofran. I can't tell you the number of times our oncologist, Dr. Jordan Wilbur, went to bat for us with our HMO. I used to tell him that there were days he was more like a warrior than a physician.

In the last few months of her life, Kate required oxygen to breathe. As we prepared to go home for the last time, our doctor was making arrangements for an oxygen machine to be delivered to our home. The home health care company phoned me in the hospital to let me know that our HMO was not going to cover the oxygen machine. When I asked why, the company told me that you had to have a room air saturation of 88% and Kate's was 89%. Now we were in the position of having to ask health care professionals to compromise their integrity and list her room air saturation as 88%. At the end of the day, these people may know they have done the right thing for the patient but at the expense of their ethics. Our system causes these types of dilemma's every day - and they are demoralizing and debilitating to both patients and health care providers.

What would I say to our legislators as a voter, as a health care professional, and as a mother? I hope that this issue will be a defining moment in their careers. I hope they can remember the reasons why they entered politics. I hope they haven't lost their idealism. There is a solution and its called compromise. This issue transcends politics - it addresses our entire value system as individuals and as a country. I urge our elected officials to make the heroic choice to pass a Patients' Bill of Rights.