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Editorial: Lawmaker should Pass 'Lincoln's law.'

 
Maggie Hoyle addresses the Children, Families and Seniors Subcommittee with Anthony DeLuna and their son Lincoln DeLuna, 5, at the Florida State Capitol on Wednesday. JOHN PENDYGRAFT    |   Times
Maggie Hoyle addresses the Children, Families and Seniors Subcommittee with Anthony DeLuna and their son Lincoln DeLuna, 5, at the Florida State Capitol on Wednesday. JOHN PENDYGRAFT | Times
Published March 25, 2019

Lincoln DeLuna needs the state's help. The severely disabled 5-year-old boy from Lutz traveled with his parents to Tallahassee recently to encourage lawmakers to add his condition to the list eligible for Medicaid waivers. It's a reasonable request, and it's the right thing for the state to do.

The Tampa Bay Times' Lane DeGregory chronicled Lincoln's journey to the Capitol in an inspiring story, a follow-up on her eight-part series about the boy that published in December. Lincoln has a hereditary genetic disorder called X-linked myotubular myopathy, which affects about 1 in 50,000 boys. His mind is fine, but his muscles don't work properly. He can't sit up or swallow. He breathes with the help of a ventilator. Without around the clock care, he could choke and die.

Most boys succumb to the disease before 2 years old. Lincoln turned 5 in December. That is a blessing, of course, but it's one that came with a sobering financial reality. He had aged out of full insurance coverage. The state would no longer pay for unlimited therapy or full-time nursing. For the last few months, his parents, who both work full time, have had to take shifts sitting at his side from 4 p.m. until midnight when an overnight nurse arrives.

The medical help ended because X-linked myotublar myopathy is not on Florida's list of illnesses like cerebral palsy and Down syndrome that quality for a Medicaid waiver. The omission is likely a function of need, as very few boys have lived long enough to need ongoing coverage. But Lincoln has, and other will, too. It's time to remedy the oversight. This is what Medicaid is for — helping individuals and families with critical medical care they cannot afford.

Rep. Adam Hattersley, D-Riverview, stepped up on Lincoln's behalf and filed HB 869, which would add the disease to the Medicaid waiver. (An identical bill was filed in the Senate.) Passing what has been dubbed "Lincoln's law" would hardly be a burden on the state. Today, just two boys would likely qualify, by Hattersley's estimate.

The House Children, Families and Seniors Subcommittee unanimously approved the bill after Lincoln used sign language to plead with the members: "I need physical therapy. I need speech therapy. I need nursing. I need help. Please." The bill, however, has a long way to go before coming law. Several more committees need to sign off before the full House and Senate get a chance to vote. There's already signs that it could get hung up over whether Lincoln is developmentally or physically disabled, which would be disappointing.

Failing to update the waiver would only further highlight how stingy Florida's Medicaid program is on so many levels, from limits on coverage to payments to doctors. The state consistently ranks near the bottom in Medicaid spending on children. Helping Lincoln would do just a little to tip that balance. He needs help.