Jenny Newman-Arruda: There's no cure, but I have the health care coverage I need

Jenny Newman-Arruda

In 2008, my business partner and I opened up TL6 the Gallery for local artists and designers. Our gallery and other new local businesses have helped revitalize New Bedford.

I’m proud of my business and want to expand it. Instead, I’m afraid I may have to close up shop. My fear isn’t because of anything I’m doing as an entrepreneur. It’s because the Trump Administration is still trying to take away people’s health care.

In addition to operating my gallery, I’m also one of the 2.9 million Massachusetts residents with a pre-existing condition. Three years ago, I was diagnosed with a rare genetic condition, Ehlers-Danlos Syndrome (EDS) that affects my body’s collagen and requires expensive medication and consistent care.

Collagen is in all parts of our bodies: skin, eyes, the heart. My diagnosis explained the joint pain and eye problems I’d been having. It also meant I could get treatment for a heart condition that had been misdiagnosed as anxiety.

There’s no cure for EDS, but thanks to the Affordable Care Act and the Massachusetts Health Connector, I have the health care coverage I need. This keeps me out of the ER and keeps our gallery open.

The gallery is a passion for me. It also meets my financial, health care, and childcare needs better than any job I could find. I’ve worked out a delicate balance considering my health situation.

There are 130 million people in the U.S. with pre-existing conditions who are in a similar situation. We’re people of all walks of life, races, and religions who are managing a delicate balance and need politicians to have our backs instead of putting the interests of big corporations and super-rich donors first.

Before the ACA, health insurers often rejected people with health conditions, or they jacked up our premiums. Massachusetts was ahead of the rest of the country and took steps to stop insurers from discriminating this way. Then, with the ACA, the rest of the country caught up. Now these health care protections are in jeopardy.

That doesn’t mean my coverage under the ACA is perfect. It isn’t. I still have to work part-time on top of running my business so I can pay for all the health care I need.

But the ACA provides a baseline of protection for small business owners like me, and I’d suffer a lot without it.

I know we need to make sure the rules support small businesses and communities. We need to stop the Trump Administration from chipping away at our health care. And we need to keep moving forward and make health care affordable for every person in our country, no matter our health condition, our race, or our income.

I know how much we can accomplish by working together. I’ve seen it in my own community—retailers like me in New Bedford who sweep the sidewalks, shovel the snow, and anchor our downtown.

In speaking up now, I’m not just fighting for my life. I’m fighting for everything I own and love. Everything is at risk if I lose my insurance.

Jenny Newman-Arruda owns TL6 the Gallery in Massachusetts.