Kim Reno doesn't have cystic fibrosis, but she sees its effects on her patients and their families every day. As a social worker at the CF care center at ProMedica in Toledo, Ohio, she helps people manage their CF and tackle challenges related to living with a chronic disease.
Kim says that although she has seen dramatic improvements in treating the disease during her career, many families face financial ruin to access the treatments they need.
“I remember the days when people were meeting their lifetime coverage cap with just one procedure,” she says. “People were fearful. One transplant alone can prevent people from affording future care.”
While CF can be incredibly difficult to live with, Kim says some of the most heartbreaking stories she's heard from her patients are related to financial struggles and families having to pay overwhelming out-of-pocket expenses to access necessary treatment.
But instead of dwelling on this, Kim tries to focus her energy on reforming the health care system in a way that benefits everyone -- including the CF community. That's why she educates lawmakers at her state capital about CF and the needs of the rare disease community as a whole.
“Lawmakers often look at the dollar signs when considering coverage needs for small populations,” she says. “You can't put a price on somebody's life. Our patients can go to college and become productive members of society as long as they have the care they require.”
Kim fears how her patients would be impacted if critical protections in current law were removed -- like the provisions prohibiting insurance companies from denying coverage to people with pre-existing conditions and the ban on lifetime and annual coverage caps.
“My patients would be choosing between medication and food, clothing, or shelter,” she says. “It would be devastating.”
Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.