People with genetic conditions reported they are twice as likely to be denied health insurance coverage or be offered coverage that is prohibitively expensive compared with others with pre-existing conditions, according to a study by researchers at Johns Hopkins University, published in the February issue of the
American Journal of Medical Genetics. In addition, 23.5% of individuals with genetic conditions indicated their coverage had been limited compared with 14.2% of individuals with other conditions.
For all survey respondents, regardless of medical condition, a clear majority (nearly 59%) indicated that it was likely an insurance company could obtain their personal healthcare information without their permission and 71% indicated an insurance company could access their healthcare information without their knowledge, according to the study.
Also, 67% of respondents indicated there was a “high chance,” and another 21% answered there was a “medium chance” that their health insurance company could get medical information about them “from some computerized record” without them ever knowing. Further, 73% of respondents agreed that doctors should be punished if they released medical information to an insurance company without the patient’s permission.
Participants were enrolled in the survey group between March 1998 and February 2000, before the April 2003 compliance date for revisions in the federal privacy rule under the Health Insurance Portability and Accountability Act of 1996, which authorized the exchange of protected health information without permission for treatment, payment and other healthcare operations.
About 3% of respondents admitted to withholding information from insurance companies, with HIV patients (8.8%) being the most likely to do so, but that was not the extent of their privacy-protecting behaviors, according to the study.
“Other respondents suggested in qualitative comments that while they did not withhold information from an insurance company, they had decided not to apply for insurance after reading the questions asked on applications, especially when answering those questions would reveal a pre-existing condition that they assumed would lead to denial of coverage,” according to the report. “Moreover, a small proportion of participants (5.5%) reported they had decided not to use health insurance to pay for treatment in order to keep a medical condition private; this was most often reported by those with HIV (17.7%).
While nearly 90% of the study participants said they had health insurance, sizable percentages of participants with certain conditions such as HIV were covered by Medicare or Medicaid, and 49% of respondents indicated they felt they could not leave their jobs because they would lose their health insurance coverage.
And while state and federal laws, including the privacy rules under HIPAA, which governs the electronic transmission of healthcare data, prevent an insurance company from discriminating against individuals based on genetic information, the rules do not prohibit medial underwriting once an individual becomes sick from a genetic illness, the authors concluded.
“At the federal level, the Americans with Disabilities Act proscribes discrimination against persons with disabilities, which includes those with genetically related conditions,” according to the report. It noted that HIPAA, “expressly forbids a group health insurance plan from using genetic information to establish rules for eligibility or continued eligibility in a health insurance plan. It also prohibits insurance companies from treating genetic information as a pre-existing condition in the absence of the diagnosis of the condition related to such information. Thus, an individual cannot be denied healthcare coverage for a medical condition merely because they have a genetic marker for the condition, if they are asymptomatic. Importantly, however, individuals can be denied if they have symptoms of genetic disease. As such, HIPAA provides no protection for the vast majority of respondents in this study.”
The author of the report is Nancy Kass, a professor of bioethics and public health at the Johns Hopkins Bloomberg School of Public Health and the deputy director for public health of its Berman Institute of Bioethics, Baltimore.
Researchers interviewed 100 adults or parents of children with sickle-cell disease, and similar numbers with cystic fibrosis, diabetes and HIV, plus 200 adults either with or at risk for breast or colon cancer.
Of the 579 respondents interviewed, 27% reported having been denied health insurance coverage or offered insurance at a cost that was prohibitively expensive. Respondents with single-gene disorders, cystic fibrosis and sickle-cell disease, were twice as likely to report being denied coverage or being offered prohibitively high coverage as those with the nongenetic conditions who were surveyed.
Kass said in a telephone interview that HIPAA prevents excluding employees in a large, employer-sponsored group plans from being denied coverage for pre-existing conditions, so an insurance company checking on your medical background to deny coverage cannot occur. Still, “the majority of our respondents agreed that people have little power over stopping health insurance companies from getting information about them,” Kass said.
“If you need to get an individual plan, my sense is it (medical underwriting) happens routinely,” Kass said. “They will ask me a number of questions and based on my answers, that has a lot to do with how they pursue anything.”
Converting paper records to electronic “doesn’t change the principle (of medical underwriting), but it could change the threshold of how often they do it,” Kass said. “If they can have the equivalent of a credit report at the push of the button, they will do it more often.”
In her report, Kass argued that “genetic-specific laws at the federal and state level are based on the assumption that genetic information is inherently different from other medical information. It has been argued that since an individual's genetic makeup is not under his or her personal control, he or she should not be discriminated against as a result of a genetic test. Moreover, it has been argued that it is not appropriate to deny access to individuals merely at-risk for developing disease, when disease may not ever develop in the future. Indeed, like with HIPAA, most of the state genetics laws limit discrimination based on genetic risks or traits, rather than on actual genetic disease.”
The report concluded that, “future policy proposals should be broad-based and address the needs and concerns not only of those with obviously genetic conditions but those with other types of medical conditions as well.”
In January, Rep. Louise Slaughter, (D-N.Y.), introduced the Genetic Information Nondiscrimination Act that would tighten restrictions on the collection, sharing of genetic information and its use by insurance companies and employers.
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