phase 2 release of data expected sept 15, Pfizer will start phase 3 in 2019.  

Views: 8920

Reply to This

Replies to This Discussion

I’m holding onto hope that the drug companies wouldn’t bother sinking research dollars into a product if they didn’t think insurance companies would pay for it 

Given what NAAF has done in the US the last years, I think it should get more and more difficult for private american insurers to talk themselves out - arguing the matter is cosmetic. But I am not American.

In Europe the public health providers are the problem. We can go into details as loss of nose hair and eyelashes are seriously compromising people's health. Or simply refer to the psychologic comorbidities.

On the Aclaris Homepage there is an interesting blog of their CEO as to this topic. I recommend to read this.

Anyway it is important that in any country the local AA support groups do campaign for the drugs and against the disease being considered cosmetic. That is very important. The work can in fact be very effective.

In Norway for example the local support group managed to convince the public health system to pay each AA patient 2 human and 3 artificial wigs each year (until age of 18).

In Germany - believe it or not - a local support group is managed by a lady who is marketing a brand of herbal shampoos. She is AT for many decades so likely not responding to new medications. Consequentially, this organization is entirely in denial that any new medication exists. When they need to refer to this subject, anything regarding JAK inhibitors is written off as too dangerous to use those cancer-causing drugs for a cosmetic disease. The person is often appearing in the media, which is a problem. The German health system and thereby EU health authorities might be influenced or negatively prejudiced against new drugs.

Anyway, campaining works - even in both ways.

Hi Nor75, 

Im from the UK and believe the NHS are just as bad and see alopecia as a cosmetic condition rather than a disease. I know with the help of NAAF the FDA have now seen alopecia as a disease and the physiological affects and am hoping in the near future the likes of EMA will follow.

A lot of people have mentioned if you had alopecia for more than 10 years these new medications might not work, I guess it’s a fair point however there are people on here that have tried JAK inhibitors with less than 10 years of alopecia and are non-responders and there are people who have had it longer than 10 years and have had success with JAK inhibitors and vice versa.

So would you say it is not even worth trying these medications if you had alopecia longer than 10 years ? Or you think it’s still worth a try ? 

Thank you.

No, there were patients responding to JAKs with several decades, so no worries.

https://youtu.be/HXJYySMST74

I for example had no eyelashes and eyebrows for 25 years. 

This summer I got a medication mildly working in inhibiting an enzyme in AA and all of a sudden I responded - after such a long time.

Whatever drives these maniacs in Germany to campaign against 

against new medications, I do not finally know. Maybe they have made peace with AA and some business out of it - who knows.

I’d say the German lady is scared out of her life that these new medications will hamper the sales of her over-priced “herbal shampoo” !!! (Which would have a similar effect if rubbing urine on your scalp). Not only this lady though. If a medication was to be made available tomorrow that renders alopecia 100% cured then all the wig makers/sellers , fake eyebrow sellers , useless cream/liquids treatments like Cyclosporine/dithro/etc and general snake oil sales people will be out of business pronto... 

Does anyone recall the Justin Timberlake’s song “cry me a river” ?

Thank you Nor75 it's really encouraging and thanks for the video too! 

Does anyone knows how long this pf-06651600 phase 3 trial will last? 

I am looking every am and pm on clinictrials.gov for pfizer to post the phase 3. We don’t know how long it will be or how many subjects  will be needed. Phase 2 was over 2 years and 143 participants.  I am guessing phase 3 will be 2 yrs and at least 200 or more participants.  I will post once they post! In addition this is a new chemical entity not a product so it is not available in Turkey or USA or in a nutritional supplement (ha) or 

shampoo. Not sure if Pfizer will  look for a licensing agreement for approval and selling in Europe or if they do it themselves? I exoect if the safety profile holds up Europe will be very excited to bring to market. Soooooooo Singh, bottom line for us lucky folks in USA who want to take the lowest risk way to “hair” Phase 3 clinical is the way and those Wall Street folks seem to get  it right .... 2022 or tail end of 2021 if we are super lucky! 

Is it possible that we can buy this new drug(s) in turkey etc similarly to xeljanz at a cheaper price? I’ve nearly full regrowth presently but would like to know there’s a back up plan if the sh1t hits the fan again and I lose all my hair again in the future 

Hi Bibby, 

Can I ask how long you have had alopecia for and how long have you been on xeljanz? 

Congratulations on the regrowth too! 

  • Thanks mate , I’ve had alopecia 34 years. Went AT 5 years ago. I have 80% regrowth which came after I self treated (painfully) for 2 months solid with raw stinging nettles and minoxidil. Hoping the regrowth stays. 

 in the ground breaking work that Columbia Univ

 did with Jak’s they found contra to long standing aditudes length of time was not a determinant of effectiveness of jaks!

I am not sure about the Turkey thing in the future, given that even US sanctions are imminent. I recommend everybody to get enough supply from there in the near future.

The new drugs will surely not appear in Turkey in the first place. They will first show up in the US, Canada, Australia and Japan, as Lilly is trialing there as well.  

It is remarkable and also concerning that yet no trials were done in Europe whatsoever. Even European companies (LEO) did not trial there products in Europe.

I can again only encourage everybody in Europe with membership or connection to local support groups to campaign. The disease is devastating, it destroys lifes, marriages, jobs, carreers, childhoods, families, everything... and of course peoples overall health as well. And given what countries like Norway are spending for wigs, I really cannot see the cost balance, which eventually should not play a role given we talk about peoples health.

The disease is still handled as a cosmetic condition... and that is really a problem! 

And the disease is nothing to embrace and "bald is not beautiful" whatsover. People (incl. myself) are completely disfigured and look like aliens.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service