Health has no party

Outraged by House Republicans’ repeal-and-replace bill, patient advocates Liz Salmi and Hugo Campos issued an invitation to those with pre-existing conditions: Come out.  

“I have an idea but I don’t know if it’s been done before.”

Hugo Campos looked at his phone and found a text from his friend Liz Salmi.

He wasn’t sure what she was talking about, but it was May 4, the day House Republicans passed their bill repealing and replacing the Affordable Care Act. So he made a few assumptions.

“Oh my god, Washington sucks,” he replied.

He’d read Salmi’s cryptic message right. She, too, had health care on her mind — specifically, the part of the AHCA loosening protections for people with pre-existing conditions. As a patient advocate and longtime marketer, Salmi had sensed strongly that her rage was shared — and that now was the time to act.

Her idea: create a simple graphic for people to upload as a profile picture on Twitter and Facebook and a hashtag to go with it.

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People on Twitter and Facebook have incorporated the graphic Salmi and Campos made into collages that show the care they require.

Campos loved it. They brainstormed and Photoshopped. They published. And from a first post — “My name is Liz. I’m an American with a pre-existing condition. #HealthHasNoParty” — the movement quickly spread. In tandem with similar efforts, like #IAmAPreexistingCondition, a mass coming out has taken over social media feeds.

As the heart and brain of this particular campaign, Campos and Salmi couldn’t make more sense. That’s where their pre-existing conditions reside. One has hypertrophic cardiomyopathy, the other cancer. For both, the passage of the House bill is digging up memories of a past that, in the rearview mirror, looks even more primitive and cruel than it felt.

It’s talk about denial of coverage that takes Campos back. Between 2011 and 2013, he got two rejection letters: one from Anthem Blue Cross and another from Kaiser Permanente. Applicant name, the first one reads: Hugo O Campos. Decline reason: Defibrillator implanted.

Unable to buy coverage during a stretch before Obamacare was implemented, Campos was locked out of the health care system and, quite literally, his own body. He cut pills, purchased a pacemaker programmer on eBay and enrolled in a certificate program to learn how to “interrogate” his own cardiac device.

For Salmi, what hurts is the suggestion, promoted by some, that people with pre-existing conditions are to blame for their plight, and deserve to pay more for coverage.

She was a fit 29-year-old who didn’t drink or smoke when she had a seizure, went to the hospital and learned she had a mass in her brain. It was Friday of her first week on a new job — and she was between employer-sponsored insurance plans.

Both Salmi and Campos live in California, but their campaign has brought in people across the country and political spectrum who feel a similar sense of betrayal.

In the Facebook group Campos shares with his patient community, one member wrote: “I’m a veteran. I don’t cheat on my taxes. I vote in elections … Today I feel like some dog kicked out of a car on the edge of town — more trouble than I’m worth.”

Campos and Salmi say the openness is a testament to progress made by the ePatient movement. After a decade of chipping away at the stigma around disease, people feel more comfortable owning and chronicling their conditions.

And while doing so can feel self-indulgent, the political moment has turned sharing into an act of compassion — of civic responsibility, even.

“People are waking up,” Campos says. “They’re more engaged, more vigilant, less willing to hear a half truth.” For him, at least, going back to pre-ACA conditions does not feel tenable.

“To have that dark cloud over my head again, when I’ve managed to breathe a little bit, would be awful,” Campos says. “Can we just keep moving forward?”


ABOUT MEDICINE X | CITIZEN: To be a #medx citizen is to have a voice, no matter who you are. CITIZEN aims to be a guide to the people and action in the Medicine X community that are shaping the evolving health care conversation. Entries in this series are not an endorsement of the people or actions featured.

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