Re: HMO Hell! and CF Centers

[Guest guest]

Hi Lenora;

I just want to let you know what a tremendous value you are on this list

and for the CF cause. So many times I read your posts and think " Yes,

Lenora - Way to go! " This time I just want to let you know I am

thinking it! You are an inspiration!

M

lenora wrote:

>Sara and Others,

>I just heard this morning at a conference sponsored by the CFF that

>there is work being done on the CFF centers. They are very aware that

>some are outperforming others.. . . .

>

[Guest guest]

This is great information. I am printing it off so I can use it in

my letter to the CFF. I am convinced I need to report my

situation. It may not influence the HMO, but it is worth a try.

I have a glimmer of hope again.

Thanks.

Sara

-- In cfparents , lenora <lenora@v...> wrote:

> Sara and Others,

> I just heard this morning at a conference sponsored by the CFF

that

> there is work being done on the CFF centers. They are very aware

that

> some are outperforming others.

> I do think they will listen to you.

> The man who delivered this speech is Dr. Bruce Marshall. It was

here

> in Colorado, but reps were there from all over the country.

> Here is what I would do.

> Write a letter and follow up with a phone/fax/email (or all 3).

> Write to Dr. Bruce Marshall at the Foundation and cc Dr.

Beall.

> Explain that you were not fortunate enough to be at the recent

> conference in Denver, but that you heard many exciting things

about

> it from a friend.

> One thing of particular interest is the differences in CF Clinics

and

> the work being done to identify centers needing improvement.

> As shown on one of your first slides, the Key Features of a CF

> Foundation Care Center are:

> Multi-disciplinary team with knowledge and experience

> Committed to teaching and research

>

> If you feel this is not being met (which I think we all agree

with!)

> I think you have a very valid argument.

>

> I also think it is terrible to wait for a mistake to happen before

> you can act on changing this situation.

>

> Another point he addressed:

> The Multi-disciplinary Team consists of:

> Patients

> Family

> Physicians

> Nurses and Nurse Practitioners

> Dietitians

> Respiratory or Physical Therapists

> Social Workers

> Pharmacists

>

> If you feel your center is lacking in some of these areas, I think

it

> would be a good idea to contact the CFF now, as it is fresh in

their

> minds.

>

> I don't know if I can do anything, but I am happy to try.

>

>

> Lenora

>

> >I posted a message about a month ago about medical care and cf

> >infants. Several people responded with the very good advice to

find

> >a CFF Care Center. Unfortunately, the pulmonologist that the

Cystic

> >Fibrosis Foundation has accredited in our area is very uninformed

> >about cystic fibrosis in infants. On our first visit he told us

our

> >son only had a mild case of cf, that cpt is trivial if the child

> >stays active, and told me to " talk to my pediatrician about Zach's

> >acid reflux " because he only handles cf problems. My pediatrican

> >has stated bluntly that " CF is out of my league " .

> >He also did not even ask about Zach's enzyme dosage or his cpt

> >schedule. We eventually found out that Zach's enzyme dosage was

too

> >low and he was having malabsorption issues, not acid reflux. I

> >immediately had my pediatrician do an out of network referral to a

> >pediatric pulmonologist. It was denied. We are appealing the

> >decision, but will not have an answer before Zach's next clinic

> >visit.

> >I am curious if it is possible to let someone at the Cystic

Fibrosis

> >Foundation know that one of their " accredited " doctors is spouting

> >inaccurate information. I am sure this man is a qualified

> >pulmonologist, but he is not qualified to be treating cf infants.

It

> >is because of this doctor's affiliation with the Foundation that

the

> >insurance company will not consider it a medical necessity for

Zach

> >to be treated elsewhere.

> >Am I wrong here? Any advice would be appreciated.

> >

> >Sara - mommy to Zach 14 months wcf

> >

> >

[Guest guest]

,

It is so funny because I often think the exact same thing about you.

I am not kidding. I never pass up your posts, even when I'm way

behind.

I have had quite a couple of days here. Much of it revolving around

this conference which I was privileged to attend.

I will fill you in soon.

Suffice it to say, everyone who wondered when the CFF was going to

recognize all the work we did on the CF Awareness campaign, well, I

was recognized, awarded and thoroughly embarrassed (in a nice way)

last night at the dinner.

I also met Deford, Weiss (mom of the " 65 roses " child) and

so many other wonderful people.

I am still on a bit of a high.

Thanks so much , but any more kudos and my head may explode it's

so inflated!

xoxo

Lenora

>Hi Lenora;

>

>I just want to let you know what a tremendous value you are on this list

>and for the CF cause. So many times I read your posts and think " Yes,

>Lenora - Way to go! " This time I just want to let you know I am

>thinking it! You are an inspiration!

>

> M

>

>lenora wrote:

>

>>Sara and Others,

>>I just heard this morning at a conference sponsored by the CFF that

>>there is work being done on the CFF centers. They are very aware that

>>some are outperforming others.. . . .

>>

>

>

>

[Guest guest]

LENORA..YOU SURE EARNED EVERY BIT OF THAT --------We ALL surely do

appreciate what you have pushed & done for us.

love & hugs,

grandmombev

Re: HMO Hell! and CF Centers

,

It is so funny because I often think the exact same thing about you.

I am not kidding. I never pass up your posts, even when I'm way

behind.

I have had quite a couple of days here. Much of it revolving around

this conference which I was privileged to attend.

I will fill you in soon.

Suffice it to say, everyone who wondered when the CFF was going to

recognize all the work we did on the CF Awareness campaign, well, I

was recognized, awarded and thoroughly embarrassed (in a nice way)

last night at the dinner.

I also met Deford, Weiss (mom of the " 65 roses " child) and

so many other wonderful people.

I am still on a bit of a high.

Thanks so much , but any more kudos and my head may explode it's

so inflated!

xoxo

Lenora

>Hi Lenora;

>

>I just want to let you know what a tremendous value you are on this list

>and for the CF cause. So many times I read your posts and think " Yes,

>Lenora - Way to go! " This time I just want to let you know I am

>thinking it! You are an inspiration!

>

> M

>

>lenora wrote:

>

>>Sara and Others,

>>I just heard this morning at a conference sponsored by the CFF that

>>there is work being done on the CFF centers. They are very aware that

>>some are outperforming others.. . . .

>>

>

>

>

[Guest guest]

I second or third that! I got the climb t-shirt and think its great!

thanks!!

lots of love,

M

RE: HMO Hell! and CF Centers

> LENORA..YOU SURE EARNED EVERY BIT OF THAT --------We ALL surely do

> appreciate what you have pushed & done for us.

> love & hugs,

> grandmombev