all about chris

Chris was a 15 year old bright high school freshman. He always wanted to be a doctor since he was 5. He was diagnosed with acute lymphocytic leukemia (ALL) in January 1999. He was considered an early responder, but relapsed in May. The physician advised us to go to Hughes Clinic in Minnesota for a Phase III-B43 PAP drug, and then on to bone marrow transplant. Our insurance (a self-funded union health trust) agreed to an approximately one half million dollar transplant, but caused a delay in deciding whether or not they would pay for the therapy, which could only be provided at Hughes Clinic in MN. By the time they had decided they wouldn't pay, Chris was no longer medically eligible for the therapy, so he had to undergo several rounds of intense chemotherapy. The delay also caused his ALL to get a stronger foothold, and the chemotherapy caused him to develop a rectal fissure, and for that fissure to remain open through repeated rounds of chemo, causing bleeding, severe pain requiring morphine, and 3 severe infections. After a particularly nasty round of chemotherapy in July, we came to Minneapolis for a transplant evaluation, but the very evening we got to MN, the fevers began again and Chris went into the hospital for 28 days for sepsis (blood poisoning) due to his fissure and low white blood counts. He was on continuous morphine intravenously this whole time. To think so much of this could have been avoided if the insurance would have authorized us to come to the Hughes Clinic.

Chris essentially had no quality of life from the beginning of May until August 8, a day after Dr. Uckun took over his care at Fairview University Hospital. The next day, August 9, the insurance called initially to say that Chris' continued hospital stay was denied. Later that day they changed it so that he would be covered at a non-PPO rate, which meant we would be responsible for 30% of the bill! As an interesting sideline, our PPO doctor referred Chris to Hughes Clinic for tertiary care (care that is specialized and cannot be provided in the PPO setting in Las Vegas). The insurance actually paid thousands of dollars for an independent reviewer to determine if Chris should recieve the treatment at Hughes Clinic. They witheld this reviewers' findings from us until we had to get a lawyer to write a letter that demanded we be able to see it! Remarkably, the reviewer said that if Chris failed usual chemotherapy that he should receive the B43PAP! They would not even share the reviewers findings with our doctor until the lawyer twisted their arm!

The Health Trust has stated they will not negotiate a PPO rate with Hughes Clinic, which would ironically probably save them and us money. They have stomped their foot and have forced us to use non PPO providers for home health care and home IVs just so we would be stuck with the 30% copay. They have harrased us and caused pain that has been unnecessary. My husband, Tom, who carries our insurance is involved in a child-devoted profession. The union is one that is in place solely because of kids. They have refused to offer the chance of life to a child. It is unthinkable.

There are three other children in Las Vegas who are being treated or are coming to be treated with the same medicine. Two casinos and the local HMO have agreed to pay, however an agency set up exclusively to provide for the needs of children will not. No child should ever be denied the chance of life!