My son Walter was diagnosed with cystic fibrosis (CF), a rare inherited disorder that affects the lungs, digestive system and other organs in the body, when he was three days old. Receiving such a serious health diagnosis for our newborn was an incredibly overwhelming experience. We had to pivot from navigating the expected life changes that come with having a new baby, to navigating the complicated medical systems and health care Walter would require for his rare condition.
At the time of his birth, I was told he could expect about 40 years of life, with frequent and significant hospital stays. Only about 40,000 children and adults in the United States are currently living with CF so the medical specialists, therapies, surgeries, and medications Walter would now need are all highly specialized and expensive It was immediately clear that our family would not be able to manage the lifelong costs of Walter’s condition.
Parents of children with serious medical diagnoses should not be required to limit lifesaving medical care based on cost. They should be able to get their child the best care available to them. The private insurance provided to both working caregivers in our home was not enough to cover the health care Walter needed to have the best quality of life, including receiving care from leading national CF specialists at Children’s Hospital Colorado or getting access to the life-changing medication for CF patients, Trikafta. Rather than putting all our energy into supporting Walter’s health journey, we were instead forced to think through impossible decisions and trade-offs about his care to protect our family from unsustainable financial strain.
Access to Medicaid changed this trajectory for our family and allowed us to make Walter’s health our top priority. Medicaid provided relief from the anxiety my wife and I experienced while trying to manage our finances and afford Walter’s medical care. Then, we put his needs first.
CF looks different for every patient. For us, it means Walter requires many medications, specialists, doctor appointments, and sometimes hospitalizations and surgeries to meet his health challenges. Medicaid provides peace of mind that these services will be accessible for families like ours. Without it, we would not be able to afford all the complex, unique care he needs. We would also not be able to afford Trikafta, the medication that has allowed Walter to finally gain weight and mercifully eliminate digestive pain. Trikafta has extended our son’s life expectancy well beyond the 40 years we were originally told. This drug is a miracle and would be completely inaccessible to us with private insurance alone. Any disruptions or cuts to the support we receive for Walter through Medicaid would have a direct and immediate impact on our happy, thriving child.
My Weld County family is not alone in our need for the continuation and stability of Medicaid to support our child’s health and well-being. Medicaid provides essential health-care coverage for nearly half a million children like Walter across Colorado, and 86,400 of those kids reside here in Colorado’s 8th congressional district. Many of our country’s sickest children rely on Medicaid to provide coverage or fill gaps for services that are not covered by their private insurers, like we do.
Without Medicaid, the level of care that Walter and other children like him require on an ongoing basis would be inaccessible to families. Yet that is what members of Congress are currently considering — slashing the federal Medicaid budget at the expense of the children and families who desperately need this program. While Congressional leaders claim that our sickest children are not the targets of dramatic cuts, if Colorado loses the estimated $1.5 billion in federal financial support for Medicaid proposed in the budget bill, kids’ access to critical health care would be impacted across the state. We need our members of Congress to care about our kids and be unflinching supporters of the crucial support Medicaid provides to the vulnerable population of kids, especially those who represent our Weld County community. I call on all members of the Colorado congressional delegation — especially our local representative, Gabe Evans — to prioritize the health of children in their state and their communities by protecting Medicaid investments for pediatric patients like Walter.
Abby and Charles Bohall are parents and residents in Frederick.
Read More Details
Finally We wish PressBee provided you with enough information of ( Abby and Charles Bohall: Evans, protect Medicaid for Colorado kids and families )
Also on site :