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HUGO CAMPOS

A PATIENT, MOTIVATED BY HIS OWN STRUGGLE,
FIGHTS FOR PATIENT ACCESS TO MEDICAL DATA

For most of his life, Hugo Campos felt his heart do strange things. It jumped. It skipped beats. Too much coffee, he figured. Not enough rest. One morning in 2004, he ran to catch the subway and blacked out.

 

Campos’ 3-year search to uncover the cause of his heart problems began that day. Over the course of an often trying journey, Campos, the creative director of a small ad agency, stumbled upon a new calling: that of advocate. He helps other patients tell their stories and fight for health information.

After losing consciousness in the subway, Campos was rushed to the emergency room. Heat stroke, they pronounced. In the coming years, he passed out repeatedly. But routine tests came back normal. “You’re just stressed,” his cardiologist offered. “Otherwise, you’re a perfectly healthy young man.”

Campos was tired of feeling sick and not knowing why. Then something clicked: “I don’t think any of these people know what they’re talking about.”

Finally, he found an answer. Doctors at Stanford diagnosed him with hypertrophic cardiomyopathy, an abnormal thickening of the heart muscle that can prove fatal. He received an implantable defibrillator, a small device that shocks the heart in the event of a dangerous arrhythmia.  He also received a box that communicated wirelessly with the device, and sent the information to the manufacturer. Campos asked if he could have access to the data his heart was generating, figuring it would let him make choices to stay healthy. Again and again he was refused.

Then Campos lost his health insurance, and was told he would have to pay out of pocket for every visit to get his device read—if a doctor were willing to see him at all. Frustrated, he bought a pacemaker programmer on eBay and flew to South Carolina for a two-week course on how to use it. He was the only patient in attendance.

“What I think is cruel and crazy is to force somebody to go through the lengths that I went through to be empowered to care for myself,” he says.

Campos has been honored as a White House Champion of Change for Precision Medicine. And he works with Medicine X to help other patients share their stories.

He’s committed to helping others take an active role in their own care—knowing, absent his heart condition, he wouldn’t have found this passion.

“The challenges have all been worth it,” he says.

www.obamawhitehouse.gov