NEW YORK (Reuters Health) - People with sickle cell disease or cystic fibrosis -- two genetic disorders -- are twice as likely to be denied health insurance coverage compared with those with other chronic illnesses, according to the results of a survey.
"All persons with chronic medical conditions should be legitimately concerned about access to health insurance," lead investigator Dr. Nancy Kass told Reuters Health, "but individuals with genetic conditions may have additional reasons to worry."
"As we spoke to family after family," she continued, "it became clear that people with all types of medical conditions are quite worried about access to health insurance and they make life changes in order to preserve their access to insurance. People with genetic conditions may face additional challenges, however, and that is worth further examination."
Kass, who is with the Johns Hopkins Berman Institute of Bioethics in Baltimore, and colleagues came to these conclusions after interviewing adults or the parents of children who had sickle cell disease, cystic fibrosis, diabetes or HIV. They also interviewed 200 people with, or at risk of, breast or colon cancer.
Of 587 respondents, 27 percent reported they were denied health insurance or offered insurance at a prohibitive rate. Those with cystic fibrosis or sickle cell disease were twice as likely to report this as those with non-genetic conditions.
In addition, 23.5 percent of people with these genetic disorders said that their coverage of the condition was limited, compared with only 14.2 percent of those with other chronic conditions.
Most of the respondents (89.7 percent) obtained their insurance through their employer or their spouse's employer. Almost half reported being unable to leave their jobs for fear of losing their health insurance.
The researchers point out that current legislation to limit genetic discrimination in insurance addresses genetic risks or traits only -- rather than protecting those with actual disease. Thus, "current legislation may not address the challenges faced by individuals like those in this study."
"Something seems fundamentally wrong with a system of health coverage that makes it hardest for people with serious health problems (to get) the care that they need," Kass added.
"It is like carrying an umbrella around when it's sunny," she concluded, "but then the day it starts to rain, you open it up and find it's completely full of holes."
SOURCE: American Journal of Medical Genetics, February 2007.