Magazine article The Exceptional Parent

CFRI Conference

Magazine article The Exceptional Parent

CFRI Conference

Article excerpt

When I went to the Cystic Fibrosis Research Inc. (CFRI) conference in San Jose, California, on August 10, 2002, I brought along my husband, Dave, who himself has cystic fibrosis. The women at the registration table all marveled at how healthy he looked and sounded and at his advanced age, 36. They gave him a name tag that proudly read "CF Adult."

Then one woman asked if Dave was cleared to attend. Each person with CF attending the conference is required to submit a medical release indicating that s/he has never tested positive for Burkholderia cepacia, has not tested positive for methicillin-resistant Staphylococcus aureus within the past two years and is currently not culturing any bacteria resistant to all antibiotics. Although we were sure Dave was clear of these bugs, we did not have proof. So Dave spent the afternoon at the hotel pool while I attended the seminars.

If you've ever been to a CF conference or event, you'll understand why such measures are necessary. There is a likelihood of cross-contamination between people with CF. Cystic fibrosis is characterized by the production

of unusually thick, sticky mucus that typically blocks the lungs' airways. This consistent mucus production prevents clearance of bacteria, allowing them to colonize and multiply. As a result, chronic infection and inflammation occur, causing persistent coughing, sputum expectoration and wheezing.

Each conference attendee is given hand sanitizer, tissues and a plastic baggie in which to dispose of used items. People with CF are asked to refrain from touching others' utensils and serving items, and even hugging and shaking hands.

With all this in mind, I washed my hands one more time before I entered the conference room.

SCREENING FOR CG IN NEWBORNS

The California Department of Health Services' Genetic Disease Branch (GDB) is charged with developing a fair and efficient newborn screening program. California faces special challenges because of unidentified CF mutations among non-Caucasians, who make up more than 50 percent of the state's births. The GDB's Martin Kharrazi, PhD, who has a child with CF, spoke on this topic.

In 1982, 35 percent of live births in California were of Latino ethnicity, Kharrazi stated. By 2000, that number had risen to 53 percent. With the rise in Latino births has come an increase in CF cases. In 1999, there were 59 new cases of CF in Caucasians (1/3,000), while there were 28 in Latinos (1/9,000). "We have more than just the white population to deal with," says Kharrazi.

A recent study by the GDB included 900 individuals with CF who were born after 1982 and are linked to California birth records. Table 1, opposite, shows the breakdown of mutation types by ethnicity. Some identified mutations only affected Caucasians, while others were solely found in Latinos or African-Americans. This, Kharrazi says, expresses just some of the intricacies of newborn screening.

BARRIERS TO ACCESS FOR CARE

Deborah J. Kaley, RN, MSN, nursing care manager of the Pediatric Pulmonology department of Children's Hospital of Los Angeles (CHLA) spoke extensively on issues that Latinos in the Los Angeles area encounter, including unreliable transportation, dependence on state aid, smoke and air pollution.

Apparently, this CF center is doing a fine job of reaching its Latino patients. …

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