Odds are, you or someone you know has a genetic condition or predisposition to hereditary disease. As many as one in five seemingly healthy adults may carry a disease-related genetic mutation. A landmark nationwide study found that 15.5% of adults had personal risk for a genetic condition that could affect their medical care.
In my 17-year career as a genetic counselor in the Chicago area, I have helped thousands of patients obtain genetic testing that had a meaningful impact on their health care and that of their children and families. My field has evolved dramatically over the past two decades, but one thing has remained the same: Insurance companies are a roadblock to effective genetic medicine.
Genetic testing is routine. It is a standard-of-care, everyday tool that is necessary to diagnose, understand and treat all sorts of health problems including cancers, cardiovascular and neurological diseases, and disorders that occur in childhood. It has been my experience that, no matter what type of test, diagnosis or age of patient, insurance policies are designed to make it difficult to do my job.
Insurance companies employ bureaucracy and opaque rules to delay, minimize and deny coverage for medically necessary care. For example, it is common for insurance companies to impose a "fail first" or "step therapy" approach to medication prescription, requiring patients to first take a medication chosen by the insurance company even if their doctor would recommend another.
Similarly, insurances create useless step-wise approaches to genetic testing. A breast cancer patient covered by Medicare, the standard bearer of health care coverage, will be required to first test for only two genes, BRCA1 and BRCA2, when there are over 20 genes known to be associated with breast cancer.
Terminology and wording about the coverage process itself can be confusing. Pre-authorization decision-making is frequently outsourced and increasingly automated. Policies are hard to find and may be seriously out of date — genetic tests can be declined for being "experimental and investigational" even though they have been standard of care for 15 years. While some insurance companies have begun to hire genetic counselors to help improve policies and decision making, it remains difficult to access them to discuss the cases.
Insurance companies will argue their policies and decisions are designed to determine medical necessity. In reality, the logistical hurdles and unnecessary complexity are a thinly veiled tactic to complicate and confuse the process. The more frustrated patients and medical providers are, the longer testing will take and the less likely it is it will be completed at all.
One certified genetic counselor at the Neaman Center for Personalized Medicine at Endeavor Health, shared "the process of obtaining insurance coverage when medical guidelines clearly indicate the necessity of a test takes up valuable clinician time and resources. The time I spend each day submitting prior authorizations, appealing insurance denials and other insurance billing tasks is time away from seeing patients who need genetic testing for their surgical and/or treatment decisions."
The recent Illinois health insurance reform law (HB5395) is a strong step toward consumer protection, addressing predatory insurance practices surrounding medication for mental health disease. This new law sets an important precedent and establishes a model that must also be employed for genetic testing.
What stands out most about the new bill and others that have come before is not so much the details but the goals. The support behind this bill shows our representatives understand that predatory insurance practices are indiscriminate. The focus on transparency shows that legislators are aware of the methods used by the insurance industry to delay and deny coverage. The consideration of the intention behind insurance practices demonstrates our leaders aspire to put the public, and not corporations, first.
As Gov. J.B. Pritzker said in his budget address earlier this year, “The only people who should be making decisions about patient care are doctors and patients themselves.” I am heartened to see legislation that moves the needle toward more equitable, ethical health care coverage. I don’t know what area of medicine is next on the list, but I hope it’s us.
Sara Cherny is a certified genetic counselor in Chicago.
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