Colton Matter, then 14, laughs with his parents Jeff and Suzy Matter at the family’s home in Mill Creek in September, 2014. Colton, now 16, and a varsity golfer for Jackson High School, has fought leukemia since he was 9, and is now in remission. His mother recently said she is concerned what might happen if the Affordable Care Act is repealed. (Ian Terry / Herald file photo)

Colton Matter, then 14, laughs with his parents Jeff and Suzy Matter at the family’s home in Mill Creek in September, 2014. Colton, now 16, and a varsity golfer for Jackson High School, has fought leukemia since he was 9, and is now in remission. His mother recently said she is concerned what might happen if the Affordable Care Act is repealed. (Ian Terry / Herald file photo)

Editorial: What losing the ACA could mean for two families

By The Herald Editorial Board

The numbers are sobering, but they don’t tell the whole story.

When the Congressional Budget Office, the nonpartisan scoring agency led by a Republican appointee, released its review of the House Republicans’ American Health Care Act two weeks ago, it estimated 14 million Americans would lose their insurance coverage within a year and a total of 23 million by 2026, as opposed to coverage provided by the Obama-era Affordable Care Act.

“In 2026,” the report says, “an estimated 51 million people under age 65 would be uninsured, compared with 28 million who would lack insurance that year under current law.”

House Republicans passed the AHCA in May by the slimmest of margins, 217-213, and without waiting for the CBO report, without holding hearings or allowing amendments to the legislation. Senate Republicans were less than impressed with the House effort, vowing to write their own bill and meeting privately to draft something that repeals and replaces Obamacare.

But with no details from Senate leaders and no indication of what they hope to achieve, all eyes turn to what happens if the ACA is repealed and what replaces it.

What would it mean if the ACA is repealed not just for 23 million — most of them Medicaid patients — who would potentially lose coverage? What would it mean for millions more who could see premiums and deductibles drastically increased to the point of being priced out of insurance markets because of the loss of ACA protections regarding pre-existing conditions and the return of lifetime limits on coverage? What will it mean for those who lose insurance because employers no longer are required to provide coverage for part-time employees working 30 hours a week?

To better tell the story, let’s put names to a couple of those millions. Consider Sammy and Colton:

Family of both met recently with U.S. Rep. Suzan DelBene, D-Washington, in the Snohomish home of Sammy’s parents, Genesis and Francisco Avalos.

Two-year-old Sammy was diagnosed shortly after birth with severe hemophilia A, which means he lacks a clotting protein in his blood. Untreated, Sammy is susceptible to dangerous cuts and bruises but also would suffer from bleeding in his joints that causes extreme pain.

“Without it he can’t walk,” said his mother, as the toddler raced around the dining room table.

Sammy’s treatment includes an injected medication that costs a dollar a unit, his mother said; but Sammy currently requires 550 units a day. At 2, Sammy already has received more than a half-million dollars in medical treatment.

Colton Matter, 16, plays varsity golf for Jackson High School in Mill Creek and will be a senior next fall. Since the age of 9, Colton has had to fight off acute lymphoblastic leukemia, beating it into remission five times with bone-marrow transplants and trial medications, only to see it return four times, said his mother, Suzy Matter.

Colton’s story — and that of Colton’s Army, “prayer warriors” who raised hundreds of thousands of dollars for leukemia research in his name — was told in 2014 by The Herald’s Amy Nile.

Colton, said his mom, is now in remission and is finishing up a clinical trial.

“He loves being a normal kid,” she said.

Both mothers now are concerned about the loss of the Affordable Care Act and what might replace it, especially if protections for patients with pre-existing conditions are removed or weakened or if insurance companies again are allowed to put lifetime limits on coverage.

Because of how much Colton has depended on recent research, Suzy also is concerned about billions of dollars of proposed cuts in President Trump’s budget for the National Institutes of Health and National Cancer Institute.

Dr. Casey Lion, a pediatrician at Seattle Children’s Hospital, who also attended the discussion with the congresswoman, said she has seen what the ACA has meant for thousands of children at the hospital and their families who otherwise would be facing bankruptcy or who rely on Medicaid for coverage.

“Any cuts to Medicaid are going to harm children,” Lion said.

DelBene, who opposed the AHCA and whose attempts to amend it were rejected, encouraged the mothers and their friends and families to continue writing and calling Congress. DelBene and other Democrats have been open to reforms to the ACA that would help keep premium costs affordable. Earlier in the year, DelBene introduced legislation to provide a tax credit for small businesses that provide health insurance to employees.

When Colton was first diagnosed, Suzy Matter said, her first thought was to sell the family’s house. That wasn’t necessary, in part because of the generosity of Seattle Children’s and because of the ACA’s protections, she said.

“What I love is that let us worry about Colton,” Matter said, and not how his parents would pay for his treatment.

The attempts to repeal the ACA and refusal to address needed changes to it, she said, “have let this come back into my worry zone.”

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