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

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SALT means Severity of Alopecia Tool. It is a measurement as to how much alopecia is present. 100 basically means AU. The more a drug reduces the SALT score, the better.

I have Xeljanz at home as an emergency option. We are two at home having AA (incl. a child) mild to moderate. However prognosis are concerning, but we have control if not command over it. Therefore Xeljanz will only be taken if things get out of control.

It is very good that you contact UK support group. I am in contact with the Norwegian group. They have shown already that campaigning and talking to authorities can work, as they managed to improve cover for hair protesis/wigs in Norway substantially.

My statement above was a wake-up call, because I felt concerned that the fact the JAK/TYK drug was ditched for alopecia for reason of the disease being considered "just superficial" was not noted by our community.

It is good that we engage and inform everybody about it. That will pay out at the end of the day.

It was not my intention to cause panik. There will be something available - the question is just whether we get it approved by health authorities, i.e. covered.

Read the blog written by the CEO of Aclaris. They are likewise concerned about this.

Thank you for that! Now it makes sense ! And yes does make you wonder why stop the trial for the better drug! I have emailed uk alopecia a while back and they told me that the uk jak trials are happening but under wraps so we won’t find them in the news. 

How ever I will email and ask them to start campaigning so in the next few years if these next generation drugs come available all over the world then UK and Europe and other countries will not suffer under the stigma that alopecia is only cosmetic! 

Thanks again to everyone who have answered my questions informatively!

Kind regards 

I may add: the decision to ditch the JAK/TYK drug and to continue in AA only with the less effective JAK3 drug in AA whilst in other diseases, they continue both, is clearly not in the interest of the 178 Mio patients worldwide suffering from AA. 

The decision shows again: pharma companies, in this case Pfizer, developing drugs for AA are more concerned about the set-price of their drug, possibly being set too low for AA. Helping patients is not of primary concern.

Reason: Public and private health insurers might not cover a higher priced product for AA - as the disease is commonly considered "just cosmetic" or "just superficial"... only cheap and mildly effective drugs are considered suitable for "cosmetics", like AA.

Anyone reading this: get out, campaign in your national support groups, in the US, in Europe, in Asia, whereever. The disease is not "just cosmetic". Labelling it as "just cosmetic" is clearly an insult to the million sufferers, but in particular to the millions of children worldwide who's life and future is no doubt entirely ruined by this disease...

Nor75 please provide reference of your statements:

1. CEO of Aclaris is concerned  about? I reviewed 4 blogs on Aclaris web site- did not see surporting of your statement. 

2. “You” are concerned of the ditching of a drug because it is just for a superficial disease application. Please provide justification of a risk / reward of such thinking? 

Jak’s are powerful drugs,  who wants hair at the risk of disability or death?

There are children waiting ...... for a reasonable treatment. 

FDA has not approved drugs for lack of data with safety, not because AA is cosmetic- 

FDA approves plenty of drugs for cosmetic applications that have reasonable safety data. 

Many meds find themselves on the wrong side of safety and a business decision. 

 

Kimk, you may read the links and the quotations in my message above.

I see "you" are concerned about our "disability and death" because we may decide to take medications... that you dont like.

Because we just "want hair"... who do you think you are?

If alopecia areata is "just cosmetic", what is vitiligo, eczema, psoriasis?  Why will insurance companies pay for treatment of those diseases?  Alopecia areata IS A REAL DISEASE!  It is an autoimmune disease, like the above-mentioned skin diseases.  And yes, hair does service a functional purpose other than providing us with a normal appearance.  As a suffer of AU, I can tell you unequivocally that hair (scalp, eyebrows, eyelashes, body hair) serve as a protectorate from the outside elements.  Eyes are much more vulnerable to injuries without lashes and brows to protect them and keep out debris.  Vision is compromised by sweat while doing things like driving, removing a pan of boiling water from the stove, etc.  Skin is much more sensitive to insect bites and itching/irritation from exposure to the elements as well--i.e., constant rashes causing redness and itching.  I challenge anyone WITHOUT this condition to remove all head and body hair, live that ways for months, and even years, and then we will talk!!

Skin rash or no hair?I would take the skin rash in a hot minute.

I would too, Football fan.  Skin rashes are uncomfortable--but come and go.  AU causes a host of other problems as well.  But then again, insurance companies will get away with whatever they can to make a profit.  For too long, they have been sweeping alopecia areata under the rug, and it needs to stop!

The insurance industry is concerned that if AA is considered being a “genuine disease”, they would have to cover the propecia/finasterid for people with androgentic alopecia as well. Law makers have to make the difference clear and provide clear rules setting out the difference from an insurance perspective. 

Facilitating this needs to be done by national support groups, I sense this might be one of their most important tasks these days, given the actual opportunities provided by the new medications showing up.

this is great, thank you for posting it

but WHY post it in this thread instead of making a new thread for a new drug? there are so many great but completely unrelated pieces of information inside the big xeljanz thread too. impossible to find them now, though!

disorganization drives me crazy, sorry

Hi Chris, 

I agree with you mate! I seen it from CWS who posted it and got excited and thought share with everyone on this discussion as I don’t anything about it to start a discussion on it.

Just wanted to see everyone thoughts on it.

Kind regards 

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