How spreading rare disease awareness leads to change

Sometimes change springs forth from simple things, like breakfast burritos

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by Mike Naple |

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I love breakfast burritos. When I lived in California, it wasn’t uncommon for me to go on breakfast burrito runs with co-workers or while hanging out with friends over the weekend. I don’t know what it is about this magical food — maybe it’s the hot sauce — but there’s just something unique about it. It’s like a communal superpower that brings people together.

The superpower that is the breakfast burrito can even bring people together to raise awareness and spark change for different patient and health advocacy communities. That’s what happened on a winter day in January 2017, when a group of advocates led by the American Heart Association gathered together over breakfast burritos to discuss the serious threat at the time that conservative lawmakers would repeal the Affordable Care Act (ACA). When breakfast was over, the “Burrito Coalition” was born and the advocates were ready to get to work.

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PH Awareness Is About Telling My Story and Sharing Yours

Saving affordable care

The ACA fight is one of the most significant health policy narratives of the last decade. On the front lines in the battle to protect access to affordable healthcare for millions of people were advocates from a variety of coalitions and groups, including folks from the “Burrito Coalition,” disability rights groups, doctors, nurses, caregivers, and people whose lives could be at risk if they could no longer afford health coverage.

As Sue Nelson of the American Heart Association told The New York Times, advocates with the Burrito Coalition began raising awareness of what a repeal of the ACA would mean for real people. “We wrote letters, we brought in patients, we talked to congressional staff until we were blue in the face. We provided members of Congress with hundreds and thousands of stories from patients to let them know how critical it was to preserve affordable health care for their constituents,” she said.

One of the ACA’s key provisions is that it bars health insurance companies from denying people coverage or charging policyholders more because they have a preexisting health condition. Examples of preexisting conditions include cancer, asthma, lupus, diabetes, heart disease, and pulmonary hypertension (PH), among many others.

In 2006, prior to my PH diagnosis and four years before Congress passed the ACA, I was denied health coverage by an insurance company. This denial occurred in the aftermath of a life-threatening episode of high-altitude pulmonary edema. Being uninsurable because I had disqualifying preexisting conditions felt like a gut punch, like a punishment for something I had no control over. At the time, there were no protections for people like me and many others in the rare disease and chronic illness communities. Insurance companies could do as they saw best for their own fiscal health.

Estimates about the number of people with preexisting conditions range from 54 million to 135 million, depending on how these health conditions are defined. If lawmakers had successfully eliminated the ACA, protections for this population would’ve evaporated, leaving people with serious medical issues on their own without access to lifesaving healthcare.

Among the many valuable benefits of the ACA, protections for preexisting conditions became the battle cry and common cause that different groups rallied around. One reason for this was because it put a human face on the problem through personal stories. This tactic contributed to heightened awareness among the public and the media and helped build the movement.

After Congress failed to repeal the ACA, those efforts moved to the courts, where the Burrito Coalition continued to voice its opposition to invalidating the law. Rare disease and chronic illness organizations like the Pulmonary Hypertension Association, Cystic Fibrosis Foundation, National Multiple Sclerosis Society, and Muscular Dystrophy Association, among others, all spoke out for patients who depended on the ACA’s preexisting conditions protections to access healthcare coverage in order to live as well as possible.

The defeat of the ACA repeal offers one vision of how different organizations with singular purposes can join together to raise awareness and spark collective action for change. One aspect that resonates with me is the role of storytelling. While living with PH, there are moments when I feel isolated, frustrated, and misunderstood, yet when I share my story, I connect with a larger community and feel a sense of hope, reassurance, and purpose.

Our stories are what we have to offer among the rare disease and chronic illness communities. While our stories spotlight our individual experiences, when taken together, they broadcast our collective power to realize a better quality of life for all of us.

As our communities prepare to raise awareness and advocate on Rare Disease Day on Feb. 28, let us go together, let us go far, and let us eat breakfast burritos!

Follow Mike Naple on Twitter: @mnaple.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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