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Deborah Burger Headshot

The Power of Patient Advocacy

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It's a beautiful morning in Orange County, the surf's up, and it's spring break for the students at Valencia High School, except one: 17-year-old Nick Colombo. Nick is home in bed, suffering from the devastating and painful complications of his four-year battle with Ewing's Sarcoma. He's waiting for a break of a different kind. The break that could help restore his health and save his life.

Nick's trusted doctors at Children's Hospital Los Angeles consulted with experts at the Mid-America Sarcoma Institute in Kansas, who determined that Nick would benefit from treatment with the CyberKnife, an advanced and highly specialized form of radiation therapy. Nick's insurance company, Pacificare refused to pay for the treatment: claim denied. They said he didn't need it.

Ricky Colombo, Nick's 19-year-old brother, is a student at Vanguard University. The school makes a lofty claim and anyone who's met Ricky will bear witness to it: "Vanguard prepares students to be world changers." Ricky realized that there was something very wrong in his corner of the world when the insurance company blocked his brother's chance to live and he took action.

The California Nurses Association/National Nurses Organizing Committee got the call. Ricky had heard a story about how the nurses were able to mobilize support with the family of another teen, Nataline Sarkysian, who was denied a life saving liver transplant by insurance giant Cigna. They reversed their decision hours before she died. Ricky's love for his brother is sacrificial and his determination to fight this kind of injustice is inspiring.

Registered Nurses are duty bound by law to be patient advocates and sometimes that means taking our advocacy outside the walls of the hospitals to the front door of an insurance company. That's where we met Ricky, at the front door of Pacificare, (now owned by United Health), in Cypress.

Nearly 100 of Nick's classmates gave up a day at the beach to join us and carry picket signs in a show of solidarity and collective advocacy power. "Health care for Nick, Health care for all," was the phrase we chanted. The altruism and resolve of those young students is inspiring. If it could happen to Nick, it could happen to anybody; and this is a family with "insurance."

Pacificare's corporate offices had been flooded with phone calls protesting their decision for the past two days as word of the denial spread. When we arrived with our picket signs, we learned that Pacificare had reversed their decision late Monday evening and agreed to pay for Nick's radiation treatments. For that we're grateful, but no one should have to beg for medically necessary care and hold bake sales to pay for it.

How much more pain and suffering are we going to tolerate in this country? It doesn't have to be this way. We're the only industrialized nation in the world that doesn't have a guaranteed, single-payer health care system. The freedom to go to any doctor or any hospital. It's not a dream, it's legislation.

HR 676, authored by U.S. Representative John Conyers, and sponsored by CNA/NNOC, is legislation that will help us live this dream.

Nurses hearts are broken every day when we see the devastating effects of our broken health care system. Patients are denied the care they need because of exclusions for pre-existing conditions. They're rationed out of the system by co-pays and high deductibles. The problem isn't Pacificare -- it's every single insurance company. They make a profit by denying care to patients like Nick. That's why we need to replace them with the non-profit system that every other industrialized nation enjoys.

We don't need more insurance coverage. There's a lesson to be learned by every politician who thinks insurance companies are the solution. When else in the history of our country has a candidate for office proposed a mandate that requires that we purchase a defective product? We already pay more for care and we get less; a lower life expectancy and a higher infant mortality rate.

If you move, travel, or lose your job, your healthcare coverage always goes with you. There's no more administrative waste lost to insurance company paperwork. Patients and their doctors make decisions for care based on individual patient needs without interference from insurance company bean counters.

The Nataline Sarkysian and Nick Colombo families have insurance. Remember them the next time you think you do. And, remember them the next time you hear a candidate for president tell you about a mandate that will enrich the insurance companies. The tragedy of illness or injury shouldn't be compounded by financial ruin for families. Since when did taking care of each other become socialism?

As progressives in a humane society we've recognized that we're all in this together. May God bless Nick Colombo. He's not heavy. He's our brother.