VANCOUVER, BC — The explosion in genetic testing has made it easy to learn more about personal health risks and predispositions, but a new survey raises concern these test results are being used to deny insurance for families affected with inherited sudden arrhythmic death syndromes (SADS).
Among 144 respondents who applied for insurance after a SADS diagnosis, 56% reported their application was rejected. Specifically, health insurance was denied for 24% of probands, 44% of affected relatives, and 50% of unaffected relatives. Corresponding rates of life insurance denials were even higher at 67%, 67%, and 50%.
To heartwire from Medscape, senior investigator Dr Shubhayan Sanatani (British Columbia Children's Hospital, Vancouver) said, "One of the things that was concerning was that the discrimination didn't follow a logical pattern where a death of a first-degree relative and one thing but a relative who was a genotype-positive but phenotype-negative meant another. Our numbers are small, and these were not medical documents being cross checked, but we certainly did not see a logical pattern."
The electrophysiologist explained that the survey was prompted after years of counseling families and finding "virtually nothing in the literature" regarding their insurability. SADS is a group of cardiac diseases including cardiomyopathies and channelopathies that account for as many as 43% of all sudden cardiac deaths in the young.
"I'm very concerned about genetic discrimination, and it's becoming an increasingly hot topic," he said. "We will often do these tests and assign labels to these people without necessarily fully understanding the implications."
The study, led by Saira Mohammed (British Columbia Children's Hospital, Vancouver), was published January 24, 2017 in Circulation: Cardiovascular Genetics.
The online survey was advertised through the SADS Foundations of Canada and the US and completed by 202 largely American (91%) participants between April 2012 and November 2013. Most had a diagnosis of SADS (92%) as either a proband (50%) or an affected family member (42%), and 8% were unaffected family members of a proband.
Long-QT syndrome was the most common diagnosis (85% of probands; 90% of affected relatives), followed by catecholaminergic polymorphic ventricular tachycardia (4%; 0%) and Brugada syndrome (3%; 3%).
After a diagnosis of SADS in the family, 54% of respondents had applied for some type of health, life, travel, or disability insurance. In all, 59% of probands, 64% of affected relatives, and 25% of unaffected relatives had their applications rejected.
When an explanation for the rejection was given, the blame lay with having a SADS diagnosis for 57%, having the condition labeled high risk for 32%, and having an implantable cardioverter-defibrillator (ICD) for 11%.
A similar analysis in the subgroup of respondents with long-QT syndrome found that 55% were denied insurance, with that number rising to 59% for those receiving medical treatment and 67% if they had an ICD.
As a whole, most probands and affected relatives were on treatment for their SADS diagnosis (84% and 93%), most typically beta-blockers (96% and 100%).
Notably, only 6% of probands and 7% of affected relatives reported other significant health issues that may have affected their insurability.
Still, roughly 18% of SADS respondents reported having to pay higher than standard premium rates because of a SADS diagnosis in the family.
"I've heard of more than one story where a family has not been able to obtain the level of healthcare they would normally be entitled to or afford because of the diagnosis. Where the normal cost might be $100, these people are being tasked with $1000, $2000, that kind of scale," Sanatani said.
For many, the route to insurance coverage was ultimately through a spousal or parental plan (81% probands, 79% affected relatives, 93% unaffected relatives).
This did not come without a cost, however, with insurance coverage affected as a result of a SADS diagnosis for 11% of probands, 23% of affected relatives, and 14% of unaffected relatives.
Sanatani noted that genetic counseling is a "nonnegotiable" item in both US and Canadian guidelines for those offering genetic testing, but without the data it is difficult to advise patients on what they may face in terms of insurability. The Affordable Care Act provides protection from health insurance denials based on preexisting conditions and may have reduced the discrimination reported by the survey since it took full effect in 2014, but its fate is unclear with bills already in place to replace it.
He added, "There are acts in existence in Canada and the United States to work against discrimination, but I don't think anyone has taken the insurers to task on this."
Sanatani and Mohammad report no relevant financial relationships. Disclosures for the coauthors are listed in the paper.
Heartwire from Medscape © 2017 Medscape, LLC
Cite this: Gene Tests For Sudden-Death Syndromes Curb Insurance Coverage - Medscape - Jan 27, 2017.