Couple recount difficulty in finding affordable care

Dr. William and Maura Rose at their home in North Egremont. Maura is a registered nurse and family nurse practitioner. When William was diagnosed with a rare, progressive disease 10 years ago, the couple was surprised to learn that, even medical professionals can find the health care system a challenge.

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EGREMONT — Maura Rose was inspired to get into the business of coaching people about medical health and associated bills when her husband, Dr. William Rose, was diagnosed with a rare progressive neuromuscular disease 10 years ago. The two were worried about William's health, but felt confident that the two of them, a nurse and a doctor with decades of experience in the medical field, would be able to find and pay for quality treatment.

The road ahead was not so smooth.

"This kind of brought me to a point of, 'Wow, people need help,'" Rose said. "If my husband and I were having trouble, how were other people getting along?"

Maura and William Rose were practicing medicine in Middletown, N.Y., when William got the diagnosis that would dramatically change their lives. The rare disease eventually became so bad that William no longer could work. The couple traveled across the country looking for the best medical treatment. They went to the Mayo Clinic in Minnesota and all the best hospitals in New York City.

"Here's my husband, a physician and practicing in New York, where we are affiliated with good medical centers, and me, a nurse, and we're just trying to navigate the system," Rose recounted. "How do we find doctors? How are we going to pay for this? It's a rare disease, the prices are exorbitant. Who's doing the research?"

Eventually, they found the help they needed in Boston and relocated to the Berkshires. William's condition has stabilized, Maura said, and he uses a motorized mobility chair to get around. Once William was comfortable, Maura began her patient advocacy and geriatric management business, RoseCare Patient Advocacy & Elder Services in Great Barrington.

Through RoseCare, Maura provides help navigating the health care system, keeping clients' medical bills down and coordinating care among doctors, specialists and insurance providers.

"There is such a need out here for somebody to help you through the health care system," she said.


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