UCSD researcher misses national convention on cystic fibrosis after 42 years
Says new rule amounts to discrimination
Last Updated: 49 days ago
SAN DIEGO - A UC San Diego researcher who has cystic fibrosis said he planned to attend a national conference on the disease in Utah. He tells 10News he and others like him are being excluded and calls it discrimination.
Paul Quinton, who holds a doctorate, has been studying cystic fibrosis for 42-years. He studies the disease at a lab at UCSD. The disease causes the body to produce thick mucus in the lungs and pancreas.
"It's a genetic disease," said Quinton. "It's congenital. You're born with it and you can't get rid of it."
The life expectancy of a person with cystic fibrosis is about 37 years. Quinton has the disease and he is now 69.
He would rather be in Salt Lake City this weekend at the national convention of the Cystic Fibrosis Foundation. It is the first time since 1971 that he will not be there. He tells 10News it breaks his heart because he loves the foundation.
"It has done enormous amounts of good for all patients with cystic fibrosis, but this comes on us like a bombshell," he said.
Quinton is talking about a new rule set by the national foundation that does not allow two people with cystic fibrosis to be in the same room while at an indoor gathering. That is because two people with the disease can infect each other with compromising illnesses that could be deadly.
Quinton knows of the danger but disagrees with the rule saying, "It very much discriminates against us as persons with cystic fibrosis. It stigmatizes us."
Gary Sabin of the Cystic Fibrosis Foundation says it is about protecting people.
"I don't know how we could ever have any credibility by putting anybody at risk," said Sabin, who speaks from personal experience.
He had four children who attended camps for kids with cystic fibrosis, and one died after getting a disease from another camp kid with cystic fibrosis.
Sabin says they would like to include everybody at meetings but the risk is too high right now
"I don't know how in good conscience take any chances when we have evidence that puts anybody at risk," he said.
The rule was implemented about a year ago and for now will stay.
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