Melody Louise Johnson, 16 – Norco, CA

According to personal accounts:

The serious disease of a child is one of the most stressful occurrences in a family’s life. While Melody’s family should have been devoting all of their time and energy to helping Melody deal with her disease, they were spending hours fighting with HMO bureaucrats on the phone.

Melody had Cystic Fibrosis (CF). CF is the number-one genetic killer of children and young adults in this country. In 1955, few children lived to attend elementary school. Today, with consistent, aggressive, and quality care the median age of survival for individuals with CF is 31 years.

Due to Melody’s pre-existing condition, her HMO required that she have secondary insurance even though their HMO said that all of Melody’s medical needs would be covered. So the Johnsons took no chances and kept a secondary insurance policy with the state-run California Children’s Services (CCS). If her HMO chose not to cover a procedure, then CCS would be there as a safety net. All CCS needed was a letter of denial from Melody’s HMO.

The Johnsons had numerous problems from the beginning. They were told that all pre-existing care costs were covered and that Melody had been put on "Medical Alert" at their HMO. According to the Johnsons, both proved to be false. On several occasions they utilized urgent care facilities and were shocked to discover that the doctors had no experience or knowledge of Cystic Fibrosis. "What is Cystic Fibrosis anyway?" one doctor asked.

The Johnsons could see that Melody was deteriorating and they continually asked for a referral to a Cystic Fibrosis Center. They were not only denied the referral, but were told that Cystic Fibrosis did not require a specialist. Incidentally, if you have a child in a CCS plan, the state requires that a child with Cystic Fibrosis be seen by a certified Cystic Fibrosis Center once a year, because the disease is so complex to manage.

According to the Johnsons, when Melody was finally seen by a specialist, the doctor advised the Johnsons that she needed an operation for a hernia and a "tune-up." That is, Melody needed her lungs treated prior to surgery as she was decompensated. The Johnsons requested that the surgery be done at a Cystic Fibrosis Center, because of the dangers involved, but their HMO insisted that it be done at one of their group hospitals. The Johnsons were concerned. The operation should have been done by a Cystic Fibrosis Team.

And the problems continued. The Johnsons said they were denied follow-up visits with doctors after surgeries and hospital stays, Melody’s specialist’s decisions were overridden by utilization review boards, and her primary doctor’s referrals to specialists were overridden by the office manager in charge of referrals.

In one case, the HMO covered the medicine that Melody needed, but not the needles to deliver it. "We only cover needles for Diabetes" they were told by an administrator. After three weeks of daily phone calls requesting a letter of denial, so they could get the needles through CCS, their HMO finally agreed to cover the needles.

The Johnsons did the best they could in making sure that Melody’s medical needs would be taken care of. Unfortunately, Melody died at the age of 16. The ERISA loophole shields Melody’s HMO from having to pay damages for delaying and denying the medically appropriate treatment because Melody was insured through her father’s employer.