When Peter Hodge's first daughter was born with cystic fibrosis, he had never heard of the disease -- let alone what to expect while raising a child with it.
“The world was a very different place,” Peter said. “There was very little public information about what CF was, and you didn't have the internet to learn about it, so I knew nothing about what she had.”
Eight years later, Peter's second daughter was diagnosed with CF.
“Think about the worst day you've ever had and multiply it by 100,” he said. “Then you're getting close to what that felt like.”
His daughters, now 24 and 16 respectively, are leading normal lives. His eldest daughter lives in a different state and has a good job. His youngest is attending high school in Florida but fights persistent lung infections. Managing their CF care comes at a steep price.
The medications, treatments and occasional hospital stays they require rack up more than $1 million in medical bills each year, Peter said. Luckily, he works for a company that offers a generous health insurance package that covers most of the cost, but with his daughters approaching an age where they can no longer stay on his plan, he worries about their ability to pay for care in the future.
“I'm not so worried about myself,” he said. “But I am worried about them ... Even with [insurance], I still feel the pressure, pain and cost of the disease.”
Peter credits his insurance as a major reason he's been able to help his daughters. But he also recognizes that if he didn't have insurance, his family would face impossible decisions about how to continue fighting their CF.
“A lot of people don't understand that living with CF is every day,” he said. “It's not once a week or once a month. Every day you have to deal with the disease. When you add in the fear of paying for drugs or getting access to the right doctor, it's an undue burden on what is already an undue disease.”
Peter says he is particularly worried about proposed changes to the Affordable Care Act (ACA), which extended insurance coverage to dependents up to age 26, eliminated lifetime coverage caps and prevented insurance companies from denying coverage for pre-existing conditions. All of these protections are critical to helping those with CF get the care they need, Peter said. He's concerned that if Congress were to remove these provisions, his daughters would struggle to find affordable and adequate health care coverage.
“[Health care reform] really gave everybody fighting this disease a safety net and a sense of 'We can deal with this,'” he said. “When you live with CF, you live with the possibility that things could get out of hand. It's such a vindictive disease, and if you give it a chance because you felt you couldn't afford a deductible on a medication, it will make you pay every single time.”
Congress needs to hear from you about the vital role adequate, affordable health care coverage plays in helping people with CF live longer, healthier lives. Send your member of Congress a message and ask them to ensure that the care and coverage needs of people with CF are protected.
Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.
