by Chani Wiesman, MS, CGC
When I was a graduate student on the road to becoming a genetic counselor, I was shocked the first time I found out how much a genetic test could cost. Upwards of $2,000??? Surely this had to be a joke! As I found out, and as my patients have found out over the years, genetic testing is unfortunately quite expensive. Depending on the test, depending on the lab, genetic testing even nowadays could cost in the thousands. Until a few weeks ago, the cost of Ashkenazi Jewish carrier screening could be as much as $4,000 – $6,000. I’ve even had a patient call me saying that the lab she reached out to quoted her a price of $9,000!
From what I have seen, the cost of genetic testing has been the biggest obstacle for families and couples looking to undergo genetic testing. I’ve seen families decide not to do medically important genetic tests because they would not be able to afford the cost of testing. Insurance companies sometimes do cover the full cost of these tests, however some insurance companies only cover a percentage of the testing, leaving the patient responsible to pay for the remainder of the bill. If an insurance policy covers, for example, 80% of the cost of testing, although that is a large chunk of it, 20% of let’s say $6,000 is still a significant amount of money, and may end up making testing cost-prohibitive for a patient.
In the past, the Program for Jewish Genetic Health has used philanthropic funding to enable us to offer prenatal or preconception Ashkenazi Jewish genetic screening to individuals whose insurance wouldn’t cover it or who would be unable to afford the testing. Recently we started working with a lab which has enabled us to make this testing available to many more individuals, and to get more bang for our philanthropic buck, so to speak. Patients with insurance can be tested through this lab and regardless of what the insurance company pays, the patient will receive no more than a $99 bill. Philanthropic funds are used to cover 2 additional tests which are not offered by this lab, to ensure that our patients are screened for the most extensive panel of Ashkenazi Jewish genetic diseases out there. For patients who have no insurance, we ask them to contribute $180 to the cost of their testing, while our philanthropic funding covers the rest.
We’re very excited about this new change in how we order our testing, and the feedback from our patients has been positive too! We wholeheartedly echo the sighs of relief we hear on the phone from patients when they realize that there are options out there to get reliable and affordable genetic carrier screening.
To make an appointment with us for Ashkenazi Jewish carrier screening, visit the “Genetic Testing” portion of our website.