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Ron Sarraf (r) with his husband, Daniel Berrios and step-son, Adam Berrios                

In 2006, Ron Sarraf was driving through Napa Valley in California when the spores of a fungi plant happened to be wafting through the dry, desert air.  Serraf had the misfortune to breathe in those spores, which unbeknownst to him, carried the fungal disease coccidioidomycosis, also known as “Valley Fever.” The air-borne fungus attacks the lungs, causing flu-like symptoms and, in worst case scenarios, a chronic form of pneumonia.

Within a few weeks, Ron developed flu-like symptoms. His lungs filled with fluid; he suffered high fevers. He was initially treated for pneumonia but never got well. His fever shot up to 105, and he became delirious.  A hospital took him in as a charity case. That was the first step in a long battle to first get diagnosed and then treated. The journey would include 17 days in a hospital. For ten years, he has been on a roller coaster ride of illness followed by treatment followed by remission followed by illness again.

He is grateful the Affordable Care Act was passed, which finally allowed him to have health insurance, regardless of his employment.

“I wasn’t even a supporter of the ACA when it passed,” Ron said. “I didn’t really understand it. Only after I became sick did I begin to understand how important it was, and how it saves lives. It saved my life.”

Ron remembers the many times in the last decade when he didn’t have insurance and had to depend on charity care or relatives to cobble together medical care and money to pay for medications.

His illness has forced him in and out the workforce, losing his insurance when he lost his employment. One year, his elderly father helped pay for three months of medications out of his own pocket. When his father could no longer afford it, Ron could no longer take the medications, and he became severely ill.

When his illness flares up, the treatment is expensive – $8,000 a week for three weeks of infusion therapy.  The oral medications to stay in remission cost $2,000 a month.

“My medical costs are $250,000 some years,” Ron said.

Today, with his disease flaring up once again, Ron is worried sick, literally. If the ACA is changed to eliminate the protections against discrimination for pre-existing conditions, patients like him might be excluded or have to pay unaffordable premiums. Those with pre-existing conditions might be placed in “high-risk” pools that could be underfunded. The sickest, and most vulnerable patients, could be forced to compete for limited funds.

Right now, with the changes contemplated to the ACA, Ron is very worried for his future.

“Worry and stress is the worst thing you can have when you have disease related to your immune system,” Ron said.

And, by the way, Ron wants everyone to know this can happen to anyone.

One day, Ron was healthy, driving through a California desert town. Now he is battling a debilitating and potentially deadly disease that has upended his career and his life.

“As far as doing the right things to stay healthy, as has been suggested by some government officials, I remind them, the disease I have is gotten through the simple act of breathing air outside in one of several western states,” Ron said. “There is no cure, no vaccine and very little future for people like me.”

The one thing that gives him hope is that the treatment will work and send him back into remission and back to work and supporting his family.

“That is my hope,” Ron said. “But that will only be if I am able to have the health care that I need. What’s going to happen to me if I don’t have it?”