Re: ADEK water soluable vitamins

[Guest guest]

In a message dated 7/19/01 7:37:15 AM, duodenalswitch writes:

<< t 16:30 +0000 7/18/01, dreamweavergirlus@... wrote:

>Some people also order them Cystic Fibrosis Association because they

>are a lot cheaper. But you have to lie an say that you have Cystic

>Fibrosis to get them.

>>

Where did you get this info from????? Every post I've read about (and posted

on this subject) mentioned that one does NOT have to have CF to get the meds

from Cystic Fibrosis Foundation. EVERYONE who has posted on this subject has

talked with a customer rep, etc. and asked whether their malapsorption due to

surgery would disqualify them from purchasing ADEKS through Cystic Fibrosis

Foundation! Look in the archives, please....

all the best,

lap ds with gallbladder removal

January 25, 2001

five months post-op and still feelin' fabu!

pre-op: 307 lbs/bmi 45

now: 235 lbs!

[Guest guest]

In a message dated 7/19/01 7:37:15 AM, duodenalswitch writes:

<< t 16:30 +0000 7/18/01, dreamweavergirlus@... wrote:

>Some people also order them Cystic Fibrosis Association because they

>are a lot cheaper. But you have to lie an say that you have Cystic

>Fibrosis to get them.

>>

Where did you get this info from????? Every post I've read about (and posted

on this subject) mentioned that one does NOT have to have CF to get the meds

from Cystic Fibrosis Foundation. EVERYONE who has posted on this subject has

talked with a customer rep, etc. and asked whether their malapsorption due to

surgery would disqualify them from purchasing ADEKS through Cystic Fibrosis

Foundation! Look in the archives, please....

all the best,

lap ds with gallbladder removal

January 25, 2001

five months post-op and still feelin' fabu!

pre-op: 307 lbs/bmi 45

now: 235 lbs!

[Guest guest]

>

>> In a message dated 7/19/01 7:37:15 AM,

>> duodenalswitch@y... writes:

>> But you have to lie an say that you have Cystic Fibrosis to get

>> them.

>

> >>

>

> Where did you get this info from????? Look in the archives,

please....

>

;

The place I found this info in on the CF site itself. It says it in

black and white as a condition for registering as a customer and

one MUST be a registered customer to buy from them on-line.

While it is true that people on this list have given a different

account, and I believe the WLS folks to be telling the truth, I

prefer

to do my ordering on the internet, not by calling up people whose

internet sites don't accept me as a patient unless I call first to

explain why I should still be allowed to do business even though

I don't meet their stated criteria in black and white.

I can't see why they require one thing and then, change their

rules if you call them. I wrote to them and asked about this

inconsistency and as yet, they have chosen to ignore my written

inquiry.

This suggests to me that they may not be prepared to take a

stand and say in writing who their intended customers are and

what their acceptable business practices are.

Fortunately, I myself have insurance that will pay for all but $6 of

a 3 month prescription regardless of where I get my own script

filled so I have the luxury of being a tiny bit obstinant about this

matter.

However, from a strictly ethical point of view, (medical ethics is

my interest), this really bothers me. I'd like to see things be open,

direct, honest and applicable to one and all. I don't like the idea

that a potential customer is rebuffed by the web site but can work

the problem by calling them on the phone. They probably are not

offically taking any stance at all on bariatric patients, they are

probably simply ignoring the fact that the patient did not certifiy

that they are in fact a CF patient.

Hope this answers your question.

gobo

[Guest guest]

This is the response I got from CFF when I asked them about needing a

prescription for ADEK's:

As for requiring a prescription, since we serve the CF community, we require

a prescription for every item we dispense, this ensures that patients'

physicians are aware of the medications their patients are taking. It's

actually a policy that both our patients and their physicians are happy to

comply with.

Judie

[Guest guest]

However, from a strictly ethical point of view, (medical ethics is

my interest), this really bothers me. I'd like to see things be open,

direct, honest and applicable to one and all. I don't like the idea

that a potential customer is rebuffed by the web site but can work

the problem by calling them on the phone. They probably are not

offically taking any stance at all on bariatric patients, they are

probably simply ignoring the fact that the patient did not certifiy

that they are in fact a CF patient.>>>>>

Gobo: I can understand your view but they are NOT overlooking the bariatric

patients who did not certify they are a CF patient... WE HAVE certified that

we are NOT CF patients over the phone. That is, unless you are saying that

the only form of certification is a written one and since we did not fax a

form into them we are not 'fully certifying' as such?

I think a good question to ask them is how they perform the bulk of their

business - it might be by phone. Most people do NOT have fax machines nor

are they going to fill out a lengthy form (especially when no mention is made

of their specific condition and clarification is required) and fax it into

CF.

I can't remember if they asked me if I was a CF patient during the phone

interview.. I know I brought it up with them and needed clarification that I

would qualify to order through their pharmacy with malapsorption due to WLS,

not CF.

If you wrote them recently, I don't think they are ignoring you. Why don't

you call and ask for a particular e-mail addy/address to send the inquiry to

(directly going to someone in charge rather than going through the general

website addy). I agree that they most likely don't have any specific policy

regarding WLS patients and the need to purchase ADEKS through their agency.

However, if they are experiencing a huge increase, they may decide to come up

with an official policy. I think they may not consider this group to be that

significant to warrant altering their webpage, etc. to officially 'include'

it.

When I asked where did you get the information from -- I was referring to the

information that people had to blatently lie to obtain ADEKS, not the fact

that CF's fax registration form has a declaration stating a patient has CF.

If someone is informing them they had WLS, do NOT have CF they are not

deceiving CFF in any way. CF Foundation's rules may be ambiguous but it is

not the patient who is at fault and deliberately trying to deceive the

Foundation. That was my point.

Have you tried calling yourself and seeing what kind of response you got

via phone? Talking to a live representative may get you some clarification

and/or provide specific information on where to take your questions so they

are answered more promptly. Perhaps if you did that you'd see that I, as

well as many others, have likewise been as honest as possible and obtained

ADEKS without resorting to cheating or lying.

I totally agree that it would be better to have a clear, concise explanation

of who is permitted to purchase the vitamins (i.e. - a clause that says 'CF

patient or otherwise state medical condition that necessitates said

drug/vitamin'). But to say outright that people who have purchased through

them have had to claim to have CF is very inaccurate.

all the best,

lap ds with gallbladder removal

january 25, 2001

five months post-op and still feelin' fabu!

pre-op: 307 lbs/bmi 45 (5' 9 1/2 " )

now: 235 (goin' down!)