Alopecia World
www.alopeciaworld.com
Off Label Use of Oral Jak Inhibitor Cost
3 commercial oral drugs exist -to grow hair in 50-75% of AA patients none approved for AA therefore “Off Label” use is needed:
2 Approved by FDA
- Xeljanz-considered a pan jak 3-Tofacitinib
- Jakafi- Jak 1/2 inhibitor - Ruxolitinib
1 Approved in Europe
- Olumiant-Jak 1- Baricitinib - resubmitted to FDA for RA
Those individuals taking these drugs please share:
1. Is your health insurance drug plan covering, if so how much is the cost
2. If paying out of pocket how much are you paying and how do you obtain
3. How long have you been taking, have you started grown hair, stopped lost hair , started again etc.
Fyi
To the best of my knowledge:
there are 4 drugs in clinical trials:
Aclaris Therapeutics-Ati 502-topical- Jak 1/3 selective-
Ati 501-Oral - Jak 1/3 selective-
Concert Parm - CTP-543-Oral- Deuterated Ruxolitinib- Granted Fast Track
Bristol Myers - Abatacept-?
Replies to This Discussion
-
Permalink Reply by darius on
-
Great syummery
My 14 year old son has been getting Corticosteroid injections as of October 2017 and after ~ 3 months we ended up with a 4 week interval which results in keeping the hair. Around week 5 his eyebrows start thinning. He is taking other meds and he regrown hair on the head and is stable. As soon as we start reducing the dosage he starts losing hair. Started Tofacitinib in cream format a month ago for his eyebrows while still continuing with the injections. Started to see a lot of new growth in week 3. While we think its a bit early it looks like it might be having a positive effect.
Insurance does not cover it (major company PPO).
Paid $335 out of pocket for a small tube Tofacitinib in cream. Had to have prescription (off label) per our doctor there is only one pharmacy that custom makes it. While expensive it does come in a fancy pouch ;) They also can make Ruxolitinib cream but that was $1000.
Source: Chemistry Rx, chemistryrx.com
-
-
what "other meds" was he taking previously?
How much information did your dermatologist have to provide on the prescription? did they specify the strength and carrier, or was it just "ONE TUBE OF HAIR GROW TONIC PLS"
be sure to keep us up to date on how he's doing with the topical cream
thank you
-
Permalink Reply by Scott James on
-
Hi,
Thanks for posting about your son’s response.
I’m considering giving the tofacitinib cream a try too.
What percentage is it ? Perhaps 1or 2 percent ?
And how often does your son apply it ?
Thanks
-
-
Its 2%.
-
-
2% - Thanks Hope4mySon
How often does he apply it ... and how thin/thick ?
-
-
two times a day. we had substantial regrowth so they lowered it to one time a day but now hes losing hair again so im putting it again two times a day. they say to put a thin thin layer but the cream is very thick and my son is 2 so its not like he is allowing me to liberally put it on thinly and perfectly so i end up putting much more.
-
-
Thanks for sharing.
Let’s hope you putting a layer on twice a day again leads to continued regrowth.
-
-
Sorry I do not check often, I will need to get the percentage details from the doctor. The prescription was posted directly from doctor to the pharmacy. We use it twice a day on the eyebrows and so far so gog. Fingers crossed.
-
-
Once a drug is approved by the FDA for treatment of alopecia, doesn't insurance have to cover it? Insurance covers drugs for other autoimmune diseases (eczema, psoriasis, vitiligo), so how can they deny coverage for alopecia areata (another autoimmune disease)? Can you someone tell me if insurance companies will be required to cover this?
-
-
Insurance doesnt have to cover anything. If the FDA approves it then hopefully "we" could have more of a leg to stand on to get it approved. We have been trying for 5 months to get approval for our son and have failed and are just paying out of pocket.
-
-
they will sometimes decline it because it's deemed cosmetic. Similarly some people are not able to get wigs or rogaine paid for
-
-
"Cosmetic"? So why do they cover treatment for other "cosmetic" issues caused by disease (vitiligo, eczema, etc.)? As far as wigs are concerned, insurance companies will cover wigs for cancer patients, but not for alopecia areata patients (at least mine wouldn't) Why? Cancer patients' hair loss is only temporary. Our hair loss is often long-term or permanent. In the past, insurance companies have always covered "cosmetic" damage caused by injury, accident, disease, illness, or birth defects. Plastic surgery, for example, is composed of two different branches: cosmetic and reconstructive. If we need to take a drug to correct a damage from a disease (which is what alopecia areata is) then all we are trying to do is reconstruct a normal appearance. Also, hair serves a purpose other than just appearance. People such as myself with alopecia universalis are much more prone to eye injuries (no lashes or brows), infections (no nose hairs or ear hairs), and more skin rashes due to the fine layer of body hair that most people have. I think we just need to fight harder against the discrimination that alopecia patients often experience.
© 2024 Created by Alopecia World.
Powered by
