COLUMBIA, S.C.Thomas Krakowiak was only two days old when he was diagnosed with a rare blood disorder. Now he relies on multi-thousand-dollar medications to live a life like every other four-year-old.

The worst weekend

Thomas’ mother Michelle Krakowiak was scared to hold him the day after he was born. He would not stop bleeding from a small cut he got during a routine hospital procedure. It only stopped when doctors gave him stitches, but by then, Thomas had lost so much blood from that seemingly harmless cut, that he needed a blood transfusion.

 On the same day, doctors diagnosed Thomas with severe hemophilia, a rare blood disorder where blood cannot clot when someone gets cut or bruised. The news filled his mother with dread.

“The first weekend we brought him home from the hospital was probably one of the worst weekends of my life for anxiety,” Krakowiak said. “Because every time he cried, all I could think was ‘Are you hungry? Or are you bleeding internally, and you just can’t tell me?’”

High price for life

Before Thomas turned one, he began taking medicine for his hemophilia. His parents wanted to start medication for him as early as possible since the disorder could be fatal if left untreated. However, the decision came with a high cost

“Thomas’ weekly medicine is about $12,000 a month for four doses,” Krakowiak said. “And his emergency medicine is about $2,800 for three doses.”

The high price of these medications is a result of limited options and a lack of generic forms. All of Thomas’ medications are derived from human plasma or synthesized plasma that is expensive to make.

Without his medicine, Thomas would be at risk for spontaneous bleeding in his body and chronic pain; he’d also have to say goodbye to some of his favorite activities like baseball and basketball.

“If he were not on his medicine, he really wouldn’t be able to do any sports,” Krakowiak said. “The risk of injury would be too high.”

The Krakowiaks’ insurance has lowered the costs of his medications significantly, but there are still some medicines the family is hesitant to get because of the price.

“There’s one medicine that we’ve never filled because it’s $1,000 with our insurance,” Krakowiak said.

Multiplying costs

While the price for treating one person with hemophilia already goes into the thousands of dollars per year, those expenses only get higher when there are families that have multiple people with hemophilia.

The Sheltons have four people with hemophilia in their family, and two of the kids, like Thomas, take weekly medicine. Even with insurance, mother Kristen Shelton says the bill can add up to more than $10,000. She says that’s money they don’t easily have on hand.

“We don’t just have $10,000 every year to pay in January for medication, especially when you have multiple kids who need medication,” Shelton said.

Shelton is not willing to let her kids go without medication because of how it impacts their lives. Her daughter Lilly took her first dose of hemophilia medication after hurting her leg at school last year. When Lilly was treated, she was shocked that other parts of her body, like her wrists, no longer hurt.

“She was dealing with chronic pain and didn’t even realize because she had built up such a tolerance to the pain, just dealing with it, and having that first dose of medication was night and day difference,” Shelton said.

To afford the medication for their children, the Sheltons and other families turn to payment assistance programs. These programs help with people’s co-pays on expensive treatments. However, some insurance agencies do not count money from these programs toward people’s out-of-pocket maximums. This means many people are having to come up with thousands more dollars before insurance will cover the rest.

Advocating for change

The Krakowiaks and Sheltons are members of the Bleeding Disorder Association in South Carolina, and the struggle to keep their families healthy is the reason they’re advocating for a bill that would make insurance agencies accept money from payment assistance programs as part of out-of-pocket maximums.

BDASC argues that the bill would benefit everyone with a rare or chronic illness by saving them thousands of dollars every year.

“I may have a coinsurance I still have to pay of like $100, but $100 is not $5,000,” Shelton says.

The executive director for BDASC, Sue Martin, says that this bill needs to be passed this year since it would mean more people could afford their medication.

“If they don’t get it passed, if [people] can’t get their medication, what they’ll do is they’ll go to emergency rooms or they’ll go without it,” Martin said. “And without is a terrible option.”

Where the bill stands

The bill was introduced to the South Carolina House of Representatives by Representative Patricia Moore Henegan but has not left the House. The Krakowiaks and Sheltons are hoping it moves forward; if it does not pass, it would have to be reintroduced in a future session. Right now, the bill has 63 sponsors.

To follow the bill’s progress, you can visit the State House’s website.