Child With Brain Tumor Denied Access to Specialist

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Sarah Pedersen – San Mateo, CA

As told by Sarah’s mother, Brenda:

Sarah was born with a brain tumor. When Sarah was three her doctors began a course of aggressive treatment, including brain biopsies and chemotherapy. While Sarah’s body struggled to fight her disease, her father and I fought the HMO to provide her with appropriate care.

Her neurosurgeon knew Sarah needed the expertise of a doctor specializing in brain tumors in children. But the HMO saw Sarah as a diagnosis, not a child. "What difference does it make, cancer is cancer," I was told when asking for an appropriate referral. Like all HMOs, ours had a list of preferred providers, and there was no one on the list specializing in tumors like Sarah’s. Referring Sarah to a doctor in the plan, an HMO representative told me, "We’re not giving you second best, we’re giving you what’s on the list."

I’m a nurse and know my way around the medical establishment, and it still took me months to get Sarah the care she needed. Sarah’s dose of Vincristine, a common chemotherapy drug, was denied once by a clerk at the HMO because she didn’t know the computer code of the drug. People with no medical training are making decisions about the medical treatment you receive, regardless if your doctor knows best.

Once Sarah finally got to the right doctor, her chemotherapy began. Everyone knows chemotherapy causes severe nausea and vomiting. The same HMO that paid a CEO $895 million in a merger, denied Sarah a $54 prescription to quell her nausea and vomiting, because it was "too expensive."

The HMO won. They didn’t care about Sarah and wished she’d just go away. Her father and I were lucky enough to be able to switch insurance plans in the middle of a medical crisis. Because Sarah obtained her health care through her father’s employer, the HMO cannot be held legally accountable for denying or delaying valid medical care. An unintended loophole in a federal law called ERISA prevents us from recovering damages against the company. Until this loophole is closed, HMOs will have no incentive to aggressively treat the sickness in our society.

Sarah is eight now and doing well, but she still has a tumor and continues to be monitored. I wish to see changes in our health care system that puts patients before profits. Until then, others will continue to suffer at the cost-cutting hands of the HMO industry.

Consumer Watchdog
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