HMO Hell! and CF Centers

[Guest guest]

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

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