FW: For parents from California

[Guest guest]

Dear California parents of children with cystic fibrosis (CF) who were

diagnosed in the last 5 years:

As a parent of a child with CF, I am quire sure that you will never forget

when your child was first diagnosed with CF. Was it in the hospital days

after birth or possibly months (or years) later after many failed attempts

to treat failure-to-thrive or lung infections or bowel obstruction? I am

interested in hearing YOUR story.

I work at the Genetic Disease Branch of the California Department of Health

Services. I am helping the Department develop a newborn screening program

for CF. Some of you may have been involved in research studies we have

conducted to identify the most common CF mutations in California, especially

among Hispanics.

In today's poor economic climate at the State, it is very difficult to get

the ear of the officials who are making public health policy decisions. The

rationale for any new programs needs to be rock solid and cost effective.

The current costs to diagnose CF without newborn screening are hard to

estimate.

I would be most appreciative if you could take a few minutes (or hours) to

write to me with a few paragraph description of how your child(ren) with CF

was/were diagnosed. Give me dates and tell me about the types of medical

care providers you saw, about hospitalizations your child experienced, and

about any problems you had getting to see the right specialists. How much in

direct costs did you incur and indirect losses to income did you have

because of needing to take time off from work? Did your diagnostic journey

cause undue stress on family members? Did it cause you to distrust your

medical care providers? Did it have any other untoward effects on you

personally or child?

I intend to use this information to create vignettes to share with policy

makers both here in California and nationally so that they can realize the

human toll that could be avoided if newborn screening was in place for

cystic fibrosis. Fictitious names and locations will be used, so that no one

or family is identified.

I thank you in advance for helping me pull these life experiences together.

Your descriptions would be most useful if I could get them before October 1,

2003. Please feel free to get in touch with me if you have any questions or

concerns.

Sincerely,

Kharrazi, Ph.D., Chief

Program Research and Demonstration Unit

Genetic Disease Branch

California Department of Health Services

850 Marina Bay Parkway, Room F175

Richmond, CA 94804

office:

fax:

mkharrazi@...