Re: ENBREL shortage

[Guest guest]

> Hi...I've been on Enbrel since last June with no problems and

amazing results. Today I received a letter from Enbrel telling me

there will be a severe shortage in March and April. They are saying

that the prescriptions will be filled on a first come first serve

basis with a posible delay of weeks or months.

I am a member of the arthritiscentral.com website, which is put

together by the arthritis center where I am treated (it is in San

). Last week, the center issued an alert about the Enbrel

shortage. They said it could be just for a couple of weeks, or

possibly longer. They then went on to give possible other options

for us Enbrel users, after consulting with our doctors. We may need

to supplement with prednisone, or possibly go to another medication

for a while. Another alternative was to cut our Enbrel use l/2 of

the dose, i.e., only using l2.5 mg rather than the 25--again, that

was with the concurrence of our doctors. That is really

disappointing to hear, especially since the Enbrel has been working

well for me. But, I am currently going off the MTX, and starting

Arava.

That is another subject: my dr has stated that research has found

that a combination of drugs seems to work better for many people,

such as Enbrel with MTX, or MTX and Arava, or Arava and Enbrel. I

would prefer to not take anything (wouldn't that be a dream come

true), or just 1 med, but I guess that isn't an option for me now. I

am just thankful that there are meds out there to help us.

But, Ron, I am like you--I just wish I had been able to start Enbrel

sooner!!

[Guest guest]

I just got off the phone with my pharmacy and was reassured that the Enbrel

shortage only affects new patients. Existing patients that have been using the

drug will be able to get it. The shortage delays new patients waiting to start

the drug. My pharmacist told me the only problem they have encountered is a

delay in receiving the drug. Before they could get the drug within 2 days. She

told me now it is taking longer. I gave her a 3 week advance in refilling my

prescription. I called the refill in today and was told I will have my

medication by April 11th. I will keep everyone posted if for some reason I

don't receive my medication. I truly am sorry for those who are still waiting to

receive Enbrel. Lets hope they get their act together soon.

Take care,

>>> ronevans@... 03/25/02 04:29PM >>>

Hi...I've been on Enbrel since last June with no problems and amazing results.

Today I received a letter from Enbrel telling me there will be a severe shortage

in March and April. They are saying that the prescriptions will be filled on a

first come first serve basis with a possible delay of weeks or months. I just

tried to fill mine and was told they won't even accept the prescription until

April 1. The girl I talked to was a real Knucklehead and a supervisor is

supposed to call me back. My insurance said I could order today so their first

come first serve situation isn't exactly correct. RGDS Ronnie E.

[Guest guest]

Enbrel simply isn't shipping the drug on there usual21 day refill cycle.R.E.

[ ] Enbrel shortage

Is there anything illegal about sending a prescription to a pharmacy that

doesnt have a problem stocking enbrel and having them ship it to you? This

might not be cost effective because of the thermal instability of enbrel and

the added cost of what might have to be refrigerated shipping. The reason I

commented on this one is that some say there is no problem at all filling

their prescriptions while others say theve had a lot of problems with delays.

If enbrel costs $1200/mo as some have stated then whats another $50 for

refrigerated shipping? I havent recognized whether the shortages are a

regional problem or maybe just specific pharmacies. Could be that you could

find an alternate pharmacy and solve the problem. I would further mention

that the thermal instability issue might be why some pharmacies have trouble

stocking it. If there is a failure to maintain proper temperature anywhere

along the shipping route they might end up discarding the whole shipment of

enbrel due to changes to the chemistry. Orin

[Guest guest]

How do you know this? Do you work for a large pharmacy chain? Or is this pure

speculation. What Enbrel and my pharmacy have said is that all Enbrel

prescriptions are sent by our Enbrel confirmation number on a 21 day cycle.

According to Enbrel it would not be possible for any pharmacy to acquire a stock

of Enbrel. We are enrolled in a closely monitored program which requires

registration and confirmation before the prescription can be sent. The reason

some people get theirs and some don't is because it is shipped as it becomes

available on a first come fist serve basis. That means if my 21 day cycle

happens to fall after several other 21 day cycles have been filled and they are

out I have to wait. I don't like it but this seems to be the situation.

Inflammatory speculation and erroneous advice will not help the matter. This

after all is not aspirin we're dealing with.

RGDS Ronnie E.

[ ] Enbrel Shortage

More and more of those on Enbrel are relating stories

about Enbrel and reordering. If you order from a

large pharmacy chain you have a better chance of

receiving your Enbrel on time or with little delay

compared to the patient who orders from a small chain

or independent pharmacy.

Large pharmacies (Walgreen, Wal-Mart, Eckerds etc..

these are US companies, if you live in a different

part of the world just substitute the names of large

pharmacies located in your area) have the economic

ability to carry enough Enbrel to meet the needs of

their patients for a period of time. They anticipate

the amount needed an have a 30 day supply in their

warehouses. Smaller or independent pharmacies wait

until the patient calls to order the Enbrel from

Immunex.

This explains why some of us have had no interruption

in Enbrel yet!!, and others have been made to wait 2-3

weeks and forced to ration their current supplies.

I also believe (this is my opinion) that companies

like Immunex monitor these . I have no

doubt that our comments have been read by someone who

works for or with these companies. This is not

necessarily bad as we can use this forum to let

Immunex and others know how we feel about their

products, policies and company.

I hope this helps those of you on Enbrel develop a

strategy to limit interruptions of your medications by

understanding how the pharmacy you order from plays a

large role in when you receive your medication.

On a different subject. : Where do you live in

the Dallas/Ft. Worth area. I live in southwest Dallas

county in the DeSoto/Duncanville/Cedar Hill area.

Maybe we could talk by phone and share some poor me

miserable stories and help both of us feel better

knowing we are not alone in dealing with this

miserable disease. e-mail me and let me know.

=====

In Peace,

P. Lake Ph.D.

__________________________________________________

[Guest guest]

The following letter is a response from Hill (Banks), Lanessa

[Hilll @cber.fda.gov] with the Center for Biologic Evaluation

and Research (CBER) in the FDA. The email I sent is below this letter:

I am writing to you in response to your email regarding the shortage

of Enbrel. The Food and Drug Administration is aware of the

shortage. Please understand that Enbrel is regulated as a biological

product therefore it has at least one component within that is

derived from a living source whether that be bacteria, virus, blood

etc. The definition of a biological product is: Biological product

means any virus, therapeutic serum, toxin, antitoxin, or analogous

product applicable to the prevention, treatment or cure of diseases

or injuries of man:

Because this product is a biologic and not a drug the manufacturing

procedures of this and all biologics are lengthy and must be monitored

closely. Biologics have a high risk for contamination and errors.

Biologics are not drugs in that they are not chemically derived and

cannot be easily duplicated. Biologics take time to manufacturer.

The manufacturer is expanding their production capacity, thus

resulting in a delay of product because of facility upgrades.

Unfortunately, the FDA regulates the product and how it is made. We

ensure a safe production area and a safe biologic product for the

market. If a manufacturer decides to upgrade or renovate a facility,

this is beyond the regulatory authority of the FDA as is distribution

and pricing.

Here is a letter that was recently sent to patients receiving Enbrel

Therapy regarding the shortage. For more information may I suggest

you contact the manufacturer, Wyeth directly. Here is their contact

information:

1-800-934-5556. They are located in Philadelphia, Pennsylvania.

I hope this information is helpful.

Best regards,

Lanessa Hill

Public Affairs Specialist

Center for Biologics Evaluation and Research

U.S. Food and Drug Administration

FDA Comments

E-Mail: meghan@...

Comments: I have been on the waiting list for Enbrel since December

17, 2000. Now there is a shortage. This drug has turned around many

people's lives who live with arthritis. There are thousands and

probably millions world-wide waiting to receive this drug. I am one of

those people.

The shortage that this drug is undergoing verges on criminal. You

must do all that you can to expedite the process of increasing the

drug's manufacture.

Thank you very much,

Meghan

[Guest guest]

If your wife is on Enbrel as I am you know you get a 1 month supply at a time

all boxed up. They allow you to order on the 21st day so it will arrive about

the time you need it. It requires your enrollment number to order it.

According to Immunex no pharmacy no mater how large ever has a stock. As I said

before I am not happy with the way they have handled the shortage and

distribution. I still believe your speculation on how to have a better chance

at getting the drug is wrong. R.E.

[ ] Enbrel Shortage

Ronnie,

Wow! That touched a real raw spot. No I do not work

for a large pharmacy company. But, no this is not

pure speculation. Let me explain this in a different

way. Out of 1,000 people taking Enbrel how many end

up with an infection and need to temporarily stop of

decide to permanently stop because of increased

infections? I'm not sure, but I would guess a few.

Now if you have thousands of patience you are ordering

Enbrel for compared to the company who has 3 or 4 or

maybe even 200 which company can juggle their stock of

Enbrel and met the needs of their patients without an

interruption for the longest time.

Your right this is not aspirin we are dealing with.

We are dealing with a drug that makes a great deal of

difference in many peoples lives. Also, a lot of us,

me included, would like to be included in taking

Enbrel and find it quite discouraging with how Immunex

has handled this whole Enbrel shortage. My wife is on

Enbrel and is worried her supply could be interrupted

according to Enbrel and then we read and hear about

new studies being started this month. Do you think

these new patience in the studies will be told to wait

for their Enbrel? Not if Enbrel wants to run a study

with any degree of validity. Ronnie, how do you feel

about new studies being started when you are told your

supply may be interrupted?

Don't get upset when I state an obvious supply and

demand issue. Those who handle the most Enbrel will

be able to meet the needs of their patience because of

the problems with infections and Enbrel.

Instead get upset at Immunex for making you play this

21 day cycle game and hoping you don't come up short

on a cycle and supply. Immunex has been very good at

telling the doctors and pharmacies what they want us

to hear. Immunex has not attempted to answer some

very good questions that have put out there by people

in this forum. Honestly, I can not recall a company

pulling what Immunex has gotten away with. What is

really sad is there reasons might make complete sense,

but without sharing them with us we are left to form

many opinions on our own.

Hope you roll a 21 next time!!!

=====

In Peace,

P. Lake Ph.D.

__________________________________________________

[Guest guest]

In a message dated 04/09/2002 4:43:35 AM Eastern Daylight Time,

ronevans@... writes:

> According to Immunex no pharmacy no mater how large ever has a stock.

I agree - Pharmacies, as far as I know, don't stock it.

[Guest guest]

Try a Pharmacy or Apothacary at a Hospital. I work for

a prominate Hospital in Atlanta, GA, I know they keep

it in stock. I got on the Enbrel waiting list in

February, and my Ruemy says it may be August before I

can get any. I went by the Apothacary, just being

courious, and asked them if they had Enbrel. They said

sure, we keep plenty of it in stock. I just had my

first Remicade infusion on Monday (04/08/2002). I hope

it doesn't take toooo many infusions for it to work.

1.5 years ago the PA was only in my hips. Today, hips,

knees, ankles, wrists and shoulders

I am on a steady diet of Prednisone, MTX (shots),

Asulphadine, folic acid, lucivorin<-ms. and some other

pill, that I can not remember it's name . That's for

the PA.

I also take Lipitor for high colesterol, and another

pill for high blood pressure.

I am, or at least was a 39 year old male very active,

water skiing, snow skiing, camping, hiking etc... I

went out in my brand new $30,000.00 ski boat 4 times

last summer. The lake is only 30 minutes from my

house. Does that tell you how much pain I was in. This

summer I will be there every weekend. The meds I take,

are helping me do some of the things I could not have

done just 1 year ago. Thanks to all of the doctors,

and posts in this group for helping me put my life

back together from such a horrible 2001.

--- TADEL630@... wrote:

> In a message dated 04/09/2002 4:43:35 AM Eastern

> Daylight Time,

> ronevans@... writes:

>

>

> > According to Immunex no pharmacy no mater how

> large ever has a stock.

>

> I agree - Pharmacies, as far as I know, don't stock

> it.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

Address of Immunex Corporation and the names of the CEO and CFO...

Immunex Corporation

51 University Street

Seattle, WA 98101

V. Fritzky is the Chairman and Chief Executive Officer and

President

A Mann is the Executive Vice President and

Chief Financial Officer.

MomBom - ‹©¿©›

That which does not kill me... makes me meaner!

> I can't believe the drug company is doing this. I just went to pick

> up my enbrel and the pharmacist told me it is backordered until

> sometime in MAY!! I've gone from extremely upset to very angry.

I'm

> 25 and have had RA for 13 years. I've been on Enbrel 2 years. I

have

> 2 doses left and a job I can't afford to lose because they screwed

up

> and didn't make enough of this drug! I mean, this is my LIFE

that's

> going to be on hold until the shortage is over! I have severe RA

> that was only brought under control with Enbrel....I already had

> joing deformities and everything. I really need to voice a

complaint

> to someone....does anyone know a phone number I can call or address

I

> can write to? Thanks for the help and sorry this is so long.

> Jill

[Guest guest]

Hi Jill,

I agree with you 100%. This is horrible. They should be made accountable

for the shortage and the added pain and anxiety that they are causing people.

I wish there was something that could be done, but I don't know what it is.

I'll be praying for you and all the others who are waiting for this to be

resolved.

Stacey in PA

[Guest guest]

Welcome, Jill.

I'm so sorry you got such bad news from the pharmacist about your Enbrel

order. I can understand why you are very angry.

Is there any chance you could switch to Remicade? Or have you already

tried it?

Here are some links to Immunex and Wyeth-Ayerst information:

http://informagen.com/Resource_Informagen/Full/2465.html

http://informagen.com/Resource_Informagen/Full/1063.html

[ ] ENBREL shortage

> I can't believe the drug company is doing this. I just went to pick

> up my enbrel and the pharmacist told me it is backordered until

> sometime in MAY!! I've gone from extremely upset to very angry. I'm

> 25 and have had RA for 13 years. I've been on Enbrel 2 years. I have

> 2 doses left and a job I can't afford to lose because they screwed up

> and didn't make enough of this drug! I mean, this is my LIFE that's

> going to be on hold until the shortage is over! I have severe RA

> that was only brought under control with Enbrel....I already had

> joing deformities and everything. I really need to voice a complaint

> to someone....does anyone know a phone number I can call or address I

> can write to? Thanks for the help and sorry this is so long.

> Jill

[Guest guest]

Thanks you guys for the support and information. I'm sending

complaints, wish me luck!

Jill

[Guest guest]

Jill,

I don't blame you for being angry. I'm angry too! I think it is very

irresponsible

on the part of Immunex. They shouldn't have put more people on the list if they

couldn't supply the medication. I too have had dramatic results from Enbrel and

would be in trouble if I ran out. Have you tried other pharmacies to see if

maybe

one of them has it in stock?

I hope you get it without any delays.

hugs,

a

[ ] ENBREL shortage

I can't believe the drug company is doing this. I just went to pick

up my enbrel and the pharmacist told me it is backordered until

sometime in MAY!! I've gone from extremely upset to very angry. I'm

25 and have had RA for 13 years. I've been on Enbrel 2 years. I have

2 doses left and a job I can't afford to lose because they screwed up

and didn't make enough of this drug! I mean, this is my LIFE that's

going to be on hold until the shortage is over! I have severe RA

that was only brought under control with Enbrel....I already had

joing deformities and everything. I really need to voice a complaint

to someone....does anyone know a phone number I can call or address I

can write to? Thanks for the help and sorry this is so long.

Jill

[Guest guest]

I feel for you guys waiting for your Enbrel. As you may remember from a

previous post, I was taken off Enbrel after I had some bad side effects. I

have five doses of it in my fridge doing no good. I wish there was a way for

me to give it to someone waiting for their refill. Otherwise it's just going

to go to waste.