After the Supreme Court overturned Roe v. Wade, a 14-year-old child with rheumatoid arthritis was initially denied medication essential to her quality of life because she was of "child-bearing age" and could become pregnant, her mother and doctor told TODAY. After confronting the pharmacist, the mom said the prescription was filled 24 hours later.
Kaitlin Preble, 34, has lost count of how many times her daughter, Emma Thompson, has been poked, prodded and hospitalized.
"When she was 3, she was diagnosed with systemic polyarticular juvenile idiopathic arthritis," Preble, who lives in Arizona, told TODAY. "As a baby, she never crawled because she didn't want to be on her knees — she went straight to walking. When she was 2, she started limping and telling me her foot hurt."
Juvenile idiopathic arthritis is an autoimmune or autoinflammatory disease in which the body’s immune system attacks the joints and causes pain and inflammation, according to the Arthritis Foundation. A reported 10 to 20% of children with JIA have systemic juvenile idiopathic arthritis — "a rare but serious condition" in which the immune system attacks not just the joints but organs, including the liver, lungs and heart, per the foundation.
“Polyarticular” SJIA means that the body’s immune system attacks five or more joints in the body, according to Stanford Medicine. The disease can occur at any time in childhood, but most commonly starts at 2 years of age, and the cause is unknown, according to the Arthritis Foundation.
After 10 years of clinical trials, exams, lengthy hospitalizations and various experiments with dosages of the medication methotrexate — a drug prescribed to treat some cancers, arthritis and a number of autoimmune diseases, according to the National Library of Medicine — doctors finally developed a successful treatment plan and found an effective methotrexate dosage that allows Emma to walk, attend school in person, live relatively pain-free and “be the most normal,” Preble said.
On Sept. 25, when Preble attempted to fulfill her daughter's methotrexate prescription, all of that was threatened.
'I said she will suffer without this medication'
When Preble went online to see if all of her daughter's medications had been filled at a local Walgreens, she received a notification that the methotrexate was denied.
"All it said was: 'Please call doctor for more information,'" Preble explained. The mom called her daughter's rheumatologist, Dr. Debra Power, and left a message with a nurse. Afraid for her daughter's health and unable to sleep, the next day Preble drove to the pharmacy to get some answers and try make sure her daughter didn't have to miss any doses of her much-needed medication.
"I asked them why the methotrexate was denied. The pharmacy techs, both looking at the computer, said they weren't really sure," Preble said. "Then the pharmacist, from the back, said she denied it yesterday."
Preble told the technicians she believed she knew what was going on: After Roe v. Wade was overturned, Arizona enacted a total abortion ban in all cases except to save the life of the pregnant person, a law that dates back to 1864, according to the American Civil Liberties Union. Methotrexate can cause severe birth defects and is sometimes used off-label to end ectopic pregnancies and treat miscarriage, according to the National Birth Defects Prevention Study and the American College of Obstetricians and Gynecologists.
(An appeals court has since blocked the anti-abortion law. Abortions are now legal in Arizona up to 15 weeks gestation until at least Nov. 17, the earliest the case will be decided.)
The tech went back to talk to the pharmacist, and I heard the pharmacist say, ‘Well, she’s 14 years old.'
mom, kaitlin preble
"The tech went back to talk to the pharmacist, and I heard the pharmacist say, 'Well, she's 14 years old,'" Preble said, adding that because her daughter was considered "child-bearing age" the pharmacist had denied the medication. "The tech asked the pharmacist if she had looked at Emma's history, and said, 'If you look, you can see she's been on this medication for years."
After some back and forth, the tech returned, gave Preble what she said was an "I'm so sorry look," and filled the prescription. Preble said she overheard the pharmacist change her mind after reviewing Emma’s patient history at the prompting of the pharmacy tech. Emma did not have to miss any doses of her medication.
TODAY reached out to Walgreens for comment. A spokesperson provided TODAY with a written statement reading, in part, that privacy laws prohibit them from discussing "individual patients."
"Laws in several states may require a pharmacist to take additional steps prior to dispensing certain medications. These laws apply to all pharmacies, including Walgreens, and often put pharmacists in a difficult position," the statement continued. "Our pharmacists will continue to comply with all applicable laws and regulations and work closely with prescribers as necessary, to fill lawful, clinically appropriate, prescriptions."
'I was shaking and in tears'
Preble was distraught during the discussion between the technician and the pharmacist.
"I was shaking and in tears," she said. "I got really sick. I felt like I was having an anxiety attack. My daughter went from not being able to walk or play outside with other kids to where she is now. To think that it all could be taken away? That's like trying to kidnap my child from me."
My daughter went from not being able to walk or play outside with other kids to where she is now. To think that it all could be taken away? That’s like trying to kidnap my child from me.
kaitlin preble
Preble recounted all the suffering her daughter endured before she started taking methotrexate at the proper dosage. She said her joints and organs would flare up to the point that she couldn't walk; she couldn't swallow correctly and would throw up; she had severe acid reflex and hematomas on her intestines. Preble also said Emma's bladder was impacted, so she would get severe UTIs and kidney infections; she had hypertension in her eyes; her lungs were impacted, and she had severe asthma.
Emma was forced to go to school at home, from third grade to just last year, according to Preble. At one point, the child almost died after she contracted the flu, her mom said.
"All of this has severely affected her mental health," Preble said. "We're doing therapy now, but there have been times throughout her young childhood life when she has said, 'I don't want to do this anymore mom.' That is the scariest thing for me."
'The only word I can use to describe this situation is disgusting'
Even now, after her daughter was able to obtain the medication she needs, Preble can't shake the trauma of what happened when it was first denied.
"It makes me feel crazy inside. It doesn't make any sense to me, for anybody to be able to tell you what you can or can't do with your body or that you can't have a medication that's going to save your quality of life," the mom said. "Why would they even think that that's OK, ever? I cannot wrap my mind around it. The only word I can use to describe this situation is disgusting."
Power, Emma's doctor, is just as disgusted, she told TODAY. When Roe v. Wade was overturned, Power warned her patients that they may encounter issues getting certain medications. Still, Power said she never imagined in her 20 years practicing rheumatology that a pediatric patient would be impacted, adding that she never received a notification from the pharmacy that Emma's prescription had been denied. Asked whether Power was notified, Walgreens refused to discuss Emma's case due to privacy laws restricting the release of medical information.
I’m angry and I’m frustrated that we can’t provide the standard of care that we are taught to give our patients.
debra power, rheumatologist
"I'm angry, and I'm frustrated that we can't provide the standard of care that we are taught to give our patients," Power told TODAY. "Do the people making laws, do they have medical backgrounds to understand what they're forcing upon people? It's very scary for my patient and her mother to think about anything changing because for the first time in a long time (Emma) is in a good position."
Other patients like Emma have faced similar situations in which their methotrexate prescriptions have been denied. Earlier this year, an article published in the medical journal BMJ stated that patients "are reporting trouble accessing drugs for autoimmune diseases" after some states banned "abortion-inducing drugs."
In June, the Arthritis Foundation issued a statement which read in part that "some anti-abortion laws hold the threat of legal action against health care providers who prescribe or provide these medications, making it more difficult for patients to receive them."
My patient was denied necessary medication that allows her to go to school, grow as she should and develop mentally and physically over a fictitious fetus.
Debra power, rheumatologist
The statement also noted that "much higher dosages of methotrexate are used for abortion than for arthritis," adding that "a rheumatoid arthritis patient may get a maximum dose of 25 mg per week, whereas abortion requires three times that dose."
"My patient was denied necessary medication that allows her to go to school, grow as she should and develop mentally and physically over a fictitious fetus," Power said. "And what's even more crazy: The amount of methotrexate she would need to hoard in order to use it for an abortion would be three months' worth of the monthly prescription I write. She takes two pills once a week. If she took all eight pills at once, it would not cause the termination of a pregnancy — and she was still denied anyway."
Preble knows that she may very well face issues filling her daughter's medication again in the future. She said she's prepared if that day ever comes.
"I was a young mom, so I know what it's like to be that mom who is scared to stand up to people," Preble added. "But you need to advocate for your kids, no matter what. You know your kid better than anybody else."
Related video:
