The ripples continue…
This is Sadie, my medically complex teen who was diagnosed with chronic illness and rare disease at age 4. One of her illnesses is Juvenile Arthritis.
Standard first line of treatment after NSAIDs is… METHOTREXATE (which is also used for medical abortions).
Like most chemo drugs, it’s horrible and the thought of giving it to my young daughter (even in the small dose) was gut-wrenching (pun intended)… Friday “shot night” became our new norm.
It didn't work for Sadie, but FOR MANY of the 300,000+ kids in the US who are living with juvenile arthritis, Methotrexate is enough to manage their disease and prevent further joint damage. 🙏🏼
Once difficult decisions are made, the LAST thing a parent should EVER have to worry about is whether or not the pharmacy will fill the prescriptions their child needs because they have hit puberty and the pharmacist is worried about possible repercussions if the medication is used to end a pregnancy.
By the time we even get to the pharmacy step in the whole process, we’ve already battled hard on behalf of our child…
…to get a pediatrician to agree that there is an issue (aka convincing them that you’re not merely an over-protective first time mom)
…to get to the right specialists (which takes months to get an appointment plus traveling - there is a huge shortage of Pediatric Rheumatologists nationwide)
…to get the right tests ordered and approved (insert hours on the phone with the insurance company)
…to get a diagnosis (Wahoo! Finally. After a year of watching my child live in extreme pain to the point where she quit walking.)
…to get a treatment plan (🤞🏼that it will work)
…to get that treatment plan approved (insert more hours on the line with the insurance company)
…to going to the pharmacy to FINALLY get a medication that we will then wait 2-6 months to see if it works!
As a parent, you've already gone through ALL of this and then made the decision to give your child a drug that MIGHT be the answer you’ve worked so hard to find!
Yet, parents of children ages 10+ across the US have been reporting issues of not being able get their necessary meds anymore.
This is unacceptable.
Methotrexate is financially accessible for most - it has been around for 20 years and the cost is very low compared to newer drugs. Even without insurance, the cost is under $10/week compared to thousands for other medications. Teens and young adults without parental support in their illness management NEED easy access to this med!
I’m sharing this post for AWARENESS… because we’re the lucky ones. 💙
Patients with Juvenile Arthritis have treatment options. There are millions of patients and parents of kids with super-rare diseases who have NO treatment options - SHOUT OUT to ALL of these fierce illness warriors!! 🙌
We should ALL BE FIGHTING to help these patients find treatment options… NOT fighting to get the treatments that are already in place.
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