By SARA ARTHURS
The medications for Abbey Haudenshild’s two young children with hemophilia would cost $384,000 each year if the family had to pay out of pocket. Even with insurance and a copay card, it is expensive.
So Haudenshild, of Findlay, went to Columbus to speak at a press conference for legislation that would require insurers to count that copay card toward her deductible.
Her sons, 4-year-old Parker and 1-year-old Weston, both have severe hemophilia A. This is a genetic disorder in which a protein known as factor VIII is missing, or defective. Since factor VIII is involved in making blood clot, people with hemophilia can experience severe bleeding from relatively minor injuries.
Haudenshild is a carrier, but she said this was a surprise to her, and she didn’t know anyone in her family who had hemophilia. Then Parker had to be taken by LifeFlight to Columbus when he was not even a day old after he wouldn’t stop bleeding after a routine circumcision.
“It was a big shocker for us, and scary,” Haudenshild said.
By the time Weston was born, she knew she was a carrier, so he could immediately be tested for hemophilia. And she had a C-section to reduce the possibility of trauma during delivery.
There are medications that can replace factor VIII, but they must be injected into a vein. This is a challenge with a small child, not only because they don’t hold still but because it’s hard to even find a vein, Haudenshild said.
So a new medication that can be administered subcutaneously, or through the skin, has been “a life changer for us,” she said.
The drug did not exist when Parker was born, and it wasn’t typical to inject a medication into a baby’s veins.
Then at 4 months old, Parker had a spontaneous brain bleed. Haudenshild said he was not sleeping or eating well but, as new parents, she and her husband thought he might just be fussy. She called his hemophilia treatment center, which advised getting it checked out. The baby ended up staying in the hospital in Columbus for 10 days, receiving the factor through an IV.
Parker has some speech delays and has had to go through occupational and physical therapy for impairments from the brain bleed, but is “doing really well,” she said.
He had a port put in at 6 months old so his parents could give him medication at home without having to find a vein.
Weston was born in September 2018. At that time, a new medication, Hemlibra, had just been approved. The family put Weston on it when he was 4 months old. Haudenshild said that while spontaneous brain bleeds are “very rare,” they felt peace of mind at knowing this was available. Parker was also able to be put on Hemlibra, and had his port taken out.
The boys see a local pediatrician regularly, but also visit a hemophilia treatment center at Nationwide Children’s Hospital in Columbus.
They have insurance through their mother’s employer, but there are no generic versions of the new medication. Paying for it for both children would cost $32,000 for one month, if the family had to pay out of pocket. Instead, insurance covers most of it once they have met the deductible. In this family’s case, they meet the deductible and out-of-pocket maximum amount with the first prescription refill of each year.
They have a copay card which is “a huge relief for us,” Haudenshild said. The copay card pays for part of the cost of medication. But their insurance company has decided it doesn’t “count” toward the deductible or out of pocket. Haudenshild said when she went to Columbus to speak about the proposed legislation, she learned insurers used to recognize these cards but in the past five years or so, fewer of them do so.
On Jan. 22, state Reps. Susan Manchester (R-Waynesfield) and Thomas West (D-Canton) unveiled House Bill 469, which would prohibit health insurance providers from having policies that do not allow the payments made through copay assistance programs to count toward a patient’s deductible.
“Patients whose health insurance providers use these copay accumulator policies are often blindsided by the discriminatory policies and end up owing thousands of dollars because of unmet deductibles,” states the representatives’ press release about the bill. “Additionally, insurers get paid twice for the same medications, meaning they pocket the assistance payment, as well as any copays paid by the patient during the deductible phase.”
Similar legislation has been passed in four other states.
Haudenshild said she understands why, if it was a generic medication, the insurance company would want the least expensive one. But in this case, she said, “why does it matter if it’s me or if it’s someone on my behalf” who pays for the medication?
She also understands that the medication’s manufacturers have put money into research, and these medications mean her sons can play outside like other kids.
Their prognosis is for a normal life expectancy. The boys’ parents have to keep an eye on them if they get a cut or scrape, but what’s more of a concern is the possibility of internal bleeding. If one of the boys says “my tummy hurts,” it could be a stomach bug, but it could also be bleeding in his abdomen, Haudenshild said.
Both boys wear medical bracelets saying they have hemophilia, and Weston’s car seat also has a label stating this, in case he’s injured in a car accident.
Haudenshild communicates with other families affected by hemophilia on Facebook groups, and some of the older people who are living with hemophilia said it used to affect their life more dramatically, before these treatments were available. Some have called Hemlibra “a life changer.”
Lisa Raterman is chairwoman of the Ohio Bleeding Disorders Council, which is among HB 469’s supporters.
“This definitely impacts our patients” not just in Ohio but across the nation, she said. Over the past five or six years, the council has seen the trend not to count the copay card toward the deductible “slowly making its way” through different insurance companies.
Raterman said HB 469 will help people with hemophilia “continue to have the quality of life that they deserve. … We want people to be able to live very productive lives — going to school, going to work.”
Haudenshild said speaking at the press conference was “nerve-wracking,” but she and her husband, Jeff, are hoping that their family speaking up might help others.
She said she has a health savings account in which she sets money aside, but still, this cost of medication for two children “leaves you scrambling.” She’s had to put medication on a credit card more than once, and then owed interest.
She said the family (which also includes Abbey’s stepson, Gavin) has a list of home repairs they would like to get to. And when she hears someone else talking about how it has been a hard year for them financially, she does feel for that person but also is aware “for us, it’s kind of every year, financially. … It’s going to be every year for the rest of their lives.”