INDIANAPOLIS — Most 10-year-olds aren’t worried about what will happen to them if they fall off their bike.
Noraa Wise doesn’t have that luxury. A fall off her bike could kill her.
“It is really hard seeing other kids do stuff that I know I can’t do,” said Noraa.
Doctors recently diagnosed her with a rare inflammatory disease called Chronic Recurrent Multi-Focal Osteomyelitis (CRMO).
“It literally causes your bones to burst if left unchecked,” explained Noraa’s mom, Tyse.
In Noraa’s case, it’s her ribs that are inflamed.
“It’s right next to her heart and her lungs, and pieces of bone could travel through her body and cause some serious damage or even death,” Tyse said. "She’s been told that she isn’t allowed to jump or run and to be extremely cautious because her vertebrae could collapse."
It was life-changing news for a kid who had already been through a lot in the past two years, as doctors tried to figure out why she was in so much pain.
“I barely wanted to breathe because it just hurt," said Noraa. "It felt like sharp needles in my body just piercing me."
She said that changed when she started taking a methotrexate, prescribed by her doctor.
“I feel no pain,” said Noraa of the drug's impact on her.
Methotrexate is used to treat more than CRMO. It is also used on patients with other inflammatory diseases, like lupus and rheumatoid arthritis. Doctors also use it in some ectopic pregnancy cases, which is outside the uterus and not viable. Taking methotrexate will end a pregnancy without surgery.
Because of that, some women with inflammatory diseases have reported in online support groups that they haven’t been able to get their methotrexate prescription filled following the Supreme Court's ruling on abortion rights, after trigger laws banning abortion went into effect in some states.
Tyse worries her daughter’s prescription could be next. That’s why she’s written Gov. Eric Holcomb and state lawmakers, asking them what could happen to access to the drug in Indiana.
Lawmakers here haven’t yet decided about how far an abortion ban will go, but it’s expected in some form with a Republican supermajority and a governor who has said the SCOTUS decision is an opportunity to make progress in protecting the sanctity of life in Indiana.
Tysa wonders where that leaves her child.
“She deserves a happy and healthy life. She’s already a person that needs help and so I need answers from our government officials,” she said.
Noraa needs those answers, too. She’s already had to give up so much, and is scared the medicine that’s finally made her feel better will be next thing to go.
“I’m really scared that they’re just going to take it away and I can’t get my medicine so I can’t get better, and I’ll feel worse every single day,” said Noraa.
The American College of Rheumatology (ACR) issued a statement on social media on June 30, 2022, about methotrexate access:
“ACR is aware of the emerging concerns surrounding access to needed treatments such as methotrexate after the recent decision in Dobbs v. Jackson Women's Health Organization. We are following this issue closely to determine if rheumatology providers and patients are experiencing any widespread difficulty accessing methotrexate, or if any initial disruptions are potentially temporary and due to the independent actions of pharmacists trying to figure out what is and isn't allowed where they practice. The ACR has assembled a task force of medical and policy experts to determine the best course of action for ensuring our patients keep access to treatments they need."
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