ANCHORAGE, Alaska -

Editor's note: Reporter Grace Jang is examining whether Alaska should expand its Medicaid coverage in a multi-part series airing this week on Channel 2.

Fifteen-month-old Porter Bailey was diagnosed shortly after birth with hemophilia.

“When he was learning to walk and fell over and hit his head, a normal kid, you’d pick up and soothe until he stopped crying,” said Porter’s father, Bryon Bailey. “With Porter, that could mean a serious head bleed, and that could be a life-or-death situation for him.” 

He inherited the rare genetic bleeding disorder from his mother, Callie, which means she, too, is at risk of complications. 

Porter’s condition requires regular blood transfusions and thousands of dollars of medication every month. 

His bills are covered by Denali Kid Care, but neither of his parents has insurance. Callie quit her full-time job to watch her son and Bryon is a full-time student who works seasonally. 

They will not be covered under the Affordable Care Act because they don’t make enough money -- although the law was created in part to cover people like the Baileys. 

So what happened? 

In March of 2012, the U.S. Supreme Court took up the Affordable Care Act and ruled the law is constitutional, but struck down the portion that would have expanded Medicaid coverage to Americans who couldn’t afford to buy health insurance but made too much money for public aid.

The court ruling left the decision up to each state on whether to expand the program. Twenty-six states decided not to expand Medicaid, including Alaska, which means more than 41,000 Alaskans who make too much money for the current Medicaid program and too little to buy insurance don’t have healthcare coverage.

“There is unfortunately a donut hole created for people who are in less than 100 percent of the federal poverty level,” said Valerie Davidson of Alaska Native Tribal Health Consortium. “It wasn't anticipated that people who were under 100 percent of the federal poverty level would need subsidies because they were already going to be included in Medicaid expansion, because Medicaid expansion at the time the law was written was mandatory for states. Unfortunately, since the Supreme Court's decision, it's now optional.”

ANTHC commissioned a Washington, D.C.-based group, the Urban Institute, and an Anchorage group, Northern Economics, to look into how expanding Medicaid would affect Alaska. The study found 41,500 Alaskans would be eligible for Medicaid coverage if the program were expanded.

“The state would invest about $23.4 million net for the first seven years to receive about $1.1 billion in federal revenues,” Davidson said. “It would create 4,000 new jobs.”

The study also found the state economy would see a nearly $2.5 billion jump. 

Gov. Sean Parnell (R-Alaska) opted out of expanding the program, but has 10 years to change his mind on Medicaid expansion. If he does, the federal government would pick up the entire tab for the first three years. After that, the state would pay up to 10 percent of the bill, but Alaska lawmakers are divided on the law's fiscal effects.

“The federal government's going to pick up most of it, so I see problem No. 1 -- America can't afford it,” said state Sen. John Coghill (R-North Pole). “These come from dollars that are borrowed. Remember, in Congress, they're upping the debt limit, so they don't have money to pay for this. They're taking it from the future generations. How can I be in favor of that?”

Sen. Bill Wielechowski (D-Anchorage) took a different stance. 

“I think unless you're so blinded by partisan politics, there's no objective reason not to take this,” Wielechowski said. “When you have the federal government offering this to you, you have to take it. This directly affects the lives of 41,500 Alaskans. This is a huge, huge social justice issue.” 

Anchorage Faith and Actions Congregations Together, a group of religious organizations, recently banded together on the issue. 

“Jesus teaches us to have compassion for our neighbors, the least of these,” said Pastor Glenn Petersen, an AFACT member. “It should not be a partisan issue, as far as I'm concerned, should not relate to whether you're Republican or Democrat. Let's put it out there and think: How should we take care of each other? Because that's what we're called to do.” 

According to state Sen. Hollis French (D-Anchorage), who is running for lieutenant governor, after three years of signing on to expand the program the state would spend 2.5 cents for every dollar the federal government kicks in. 

But Coghill says the issue comes down to dollars and cents, saying neither the state nor the federal government should spend that money on “another entitlement program.”

“It's a transfer of wealth we don't have at this point,” Coghill said. “The budget that we have under health and social services was $3 billion last year. That's Medicaid plus all the other healthcare issues that we deal with in Alaska. That is unsustainable.” 

The governor, however, has the final say on whether to expand Medicaid coverage. He rejected the expansion for 2013, but could revisit the issue for 2014 when he submits his budget in December.

Meanwhile, the Baileys say they hope they don’t get sick.

To be continued in Part 2: The state spent nearly $80,000 to hire an Outside group to look into the potential effects of expanding Medicaid, but Department of Health and Social Services Commissioner Bill Streur has refused a number of requests to release the results of that study.