How far would you go for healthy kids? – Part 3

cystic fibrosis


Prepared for what, some critics of screening ask. “Geneticists talk about `making informed choices,'” says Barbara Biesecker, genetic counselor at the National Human Genome Research Institute in Bethesda, Maryland. “But there are lots of concerns that genetics is just a search-and-destroy mission, which in a sense it is.”

From an insurer’s perspective, the justification for screening thousands of Americans for cystic fibrosis is to save the $1 million or so it costs to provide care for the average CF patient. In other words, screening for the disease doesn’t make much sense unless at least some parents choose to abort.

“It’s impossible to calculate the loss of someone who is never born,” says Richardson. Although she has cystic fibrosis, her husband was never tested for the CF gene, and Richardson herself turned down prenatal testing during both her pregnancies.

“We felt that whatever the results were, we wanted to have these children, so it didn’t matter,” she says. “If we’re going to start eliminating part of the population because they have cystic fibrosis, what does that say about my life?”

Some patients say that CF actually enriches their lives. “We really want to live to the fullest,” says Sufian. “Fighting cystic fibrosis makes you appreciate how precious life is.”

cystic fibrosis

Other patients say that such talk glosses over tragedy. “Being diagnosed with cystic fibrosis didn’t make me empathetic or a stronger or nicer person,” says Cat Williams, 31, of Charlotte, North Carolina. Williams has two rare mutations and wasn’t diagnosed until she was 23 years old and working as a film sound technician in New York. Her constant cough made her unwelcome on the set; now her health has deteriorated so much that she can no longer work at all. “I think people who are `thankful’ to have CF are trying to look on the bright side,” Williams says. “It’s their way of coping.”

For people who are poor or who lack good health coverage, even coping takes a monumental effort. Moore was working as a marketing director for a general contractor in Austin, Texas, when she discovered that her son had CF. Day care “was no longer an option,” because CF patients are so sensitive to germs. Moore, a single mom, had to quit her job and become homeless–moving into friends’ houses for a few months at a time–for two years to get her child on Medicaid. Moore recently returned to work but still has no medical insurance (even if she did, she might not be covered; many insurers define CF as a preexisting illness and refuse to pay for drugs that can cost $48,000 a year). To continue to get state-sponsored care for Jacob, Moore has to stay under the poverty line. “I can’t make a cent more than $19,000 or there goes his insurance,” she says.

“I recently had two friends die as a result of CF, and one was only 17,” says a 26-year-old Atlanta woman who asked not to be identified. “He struggled with his health for his entire life. He had multiple surgeries to try to stop bleeding in his lungs. As for me, my life has been put on hold while I wait for a lung transplant.” She then added: “If I were to advise parents who have the CF gene, I would encourage them to think long and hard about how important it is to have their own children rather than adopt.”

Even Cindy Lynn agrees with her parents that avoiding a life with CF is the better option. As a younger child, she’d wanted a sibling with cystic fibrosis “because I felt like that would give me someone who would understand me. But by the time I was a little older, I realized I really didn’t want them to have CF. They could have it even worse than me. And going through what I go through isn’t fun.”

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