Kate's Love Keeps Mother
Fighting For Patients' Rights
Julia Hallisy Remembers Daughter's Battle With Cancer -- and HMO

By Sharon Abercrombie

When Julia Hallisy testified in favor of a federal Patients Bill of Rights, an unseen presence, a loving energy -- was there, too; her daughter Kate who lost her life to cancer last year when she was only 10 years old.

Mrs. Hallisy, a member of both St. Brendan and St. Cecilia parishes in San Francisco, testified June 25 at a hearing in San Francisco City Hall in support of a bill, introduced by Senator Tom Daschle, designed to ensure that other families would not go through what she, her husband John and Kate endured for the greater part of 10 years.

The bill, which was approved by the U.S. Senate four days later, would ensure that all Americans with public or private health insurance have access to emergency care, medical specialists and clinical drug trials.  It would also allow them to sue their HMO if they were denied service.  The issue became more complicated last week, when the House of Representatives passed a Republican alternative to the Daschle bill.  The two bills will be subject to negotiations when Congress returns next month from its summer recess.

When she was alive, Kate Hallisy had been connected, every step of the way, as her mother joined local, and then national efforts to advocate for the passage of the Patients' Bill of Rights.  Kate cheered as her mother, a San Francisco dentist, researched material for a book she was writing to help other people fight for their medical rights.

Even at her young age, these issues "were very important to my daughter," said Mrs. Hallisy.  Kate's story is a classic example of why there needs to be a Patients' Bill of Rights, her mother said.

In October 1989, Katherine Eileen Hallisy was diagnosed with bi-lateral retinoblastoma -- malignant tumors in both eyes.  She was only five months old.

Retinoblastoma is caused by a genetic defect triggered during the first few weeks of pregnancy.  The 13th chromosome does not line up correctly and genes become transposed, explained Mrs. Hallisy.

Normally, retinoblastoma is a curable type of cancer, with recovery odds between 70 and 80 percent.  At first doctors were optimistic.  "If you have to have cancer, this is the kind to get," they said encouragingly.

It didn't work that way for Kate.  Hers was a particularly virulent form of the disease.  There would be remissions, followed by reoccurrence.

When she was a year and a half old, doctors were forced to remove Kate's right eye.  In 1997, she lost her right leg when cancer spread to the bone.  During the last months of her life, it had gone to her brain.

From the outset of Kate's illness, there were HMO problems.  In retrospect, Mrs. Hallisy recalls, "you have to be a quick study in the intricacies of your HMO."

The first unpleasant surprise: "The diagnosing doctor wanted Kate to see a pediatric ophthalmologist and requested an emergency authorization from our HMO over the phone."  The insurance company gave a verbal OK, clearing the way for them to see the specialist.

But as the Hallisys belatedly found out, the person who had given the authorization had not followed the correct procedure.  As a result, the HMO would not pay their bills for months because it said the Hallisys had gone "out of plan" without their consent.

The HMO finally relented.  But as Kate's illness progressed, so did the problems with the HMO.  In many instances, it was a case of one step forward, two steps backward.

As they became increasingly caught up in a whirlwind of scans, blood work and doctors' visits, Kate's parents also faced hurdles on the financial front.  Some of their bills went unpaid for eight months.  Doctors' offices and collection services began calling.

At that point, Julia Hallisy said she became "a free employee for her HMO, an intermediary between the medical providers and the insurance company" -- this on top of the trauma of caring for a sick child, while trying to be the best mother she could be to Daniel, three years older than Kate, and later, baby Kevin.  Then there was her own dentistry practice to keep going.  Mrs. Hallisy estimates spending six to eight hours a week for months on end facilitating payments.

On one occasion, the doctor in charge of a medical group wanted reassurance that a surgical treatment for Kate would be successful.  "Of course, no one could guarantee this, so he held off giving his authorization," Mrs. Hallisy said.

Then a clerk finally told Mrs. Hallisy that if she made a substantial payment to guarantee that the hospital would be reimbursed, they would go ahead with the surgery.  The Hallisys took deep breaths, as they rounded up their four credit cards.

While the clerk put the plastic through the processing machine, Julia Hallisy was acutely aware how fortunate she and her husband were, to be able to run up credit card tabs.  But how many other families could afford to do the same?  Not many, she knew.

On one occasion, when the HMO refused to authorize a treatment, Julia Hallisy became so desperate, she took her daughter to the insurance company.

As she held her sick child in her arms, Mrs. Hallisy challenged them.  "This is a real person.  When are you going to put a human face on your decisions?" she pleaded.

But the problems continued.

At one point, Kate's doctor prescribed two years of chemotherapy.  To keep her from nausea, she need two drugs, Zofran and Nepogen.  At the time, these were new and expensive drugs.  The HMO case manager decided that Kate would have to go through a round of chemotherapy without the medicine to see how she would do.  The Hallisys were horrified.

"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," Mrs. Hallisy said.  Within days she developed a fever, fatigue, pain, severe nausea and had to be hospitalized.

In 1997, when the cancer went to Kate's brain, and she began having severe bouts of nausea, the Hallisys and their oncologist had to fight the HMO to make sure she got the right kind of medication to keep her comfortable.  The HMO was holding out for a cheaper drug, one that the doctor had tried before, but which had caused Kate to have hallucinations.

Julia and John Hallisy were haunted by HMO number crunchers even during the last few months of Kate's life.  She needed an oxygen machine at home.  But the home health care company said the HMO would not cover it, because Kate's blood oxygen level was a scant point above what the insurance company would allow.  The fact that she was struggling to breathe didn't seem relevant to them, said Mrs. Hallisy.

"Now we were in the position of having to ask health care professionals to compromise their integrity and have to fudge a bit.  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 dilemmas every day.  And they are demoralizing and debilitating to both patients and health care providers," said Mrs. Hallisy.

It is stories such as Julia Hallisy's that prompted the U.S. Senate to throw its support behind the Patients' Bill of Rights on June 29, just four days after she testified in the chambers of San Francisco City Hall.

What's next for Julia Hallisy?  This summer, she is hoping to find a publisher for her book, "The Empowered Patient."  If she can't find one, she says she will self-publish it.

Mrs. Hallisy is urging northern Californians to e-mail their representatives and urge them to support the Daschle bill in negotiations over the two versions of the Patients Bill of Rights.  Anything less "would be to take the teeth out of the legislation," she said.

If President Bush vetoes it, she said, "Then we'll be back at square one."

Source: Catholic San Francisco, Vol 3, No. 26, August 10, 2001. Republished with permission of Catholic San Francisco, official newspaper of the Archdiocese of San Francisco

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