Done well, genetic counseling and testing fulfills the mission of the triple aim: better care, better population health, and lower costs. But doing it well requires understanding what tests should and should not be done, for cost and other reasons. Karen Lewis, MS, MM, CGC, began by noting that while genetic tests can be expensive, their costs are miniscule when compared with giving cancer patients a $10,000-a-month therapy that will not work.
Payers who seek help from genetic counselors must realize that the field of certified counselors is fairly small—there are only about 3000 in the United States and only 25 training programs. Payers should look for candidates with a master’s degree and board certification from the American Board of Genetic Counseling.
To deal with the rising need for its services, Lewis said, “The field has transformed itself from a face-to-face, brick-and-mortar type of service to a telephonic, telemedicine-based service.” Counselors themselves have studied whether this approach meets patient needs, “and they have seen some very positive outcomes.”
At its heart, Lewis said, “Genetic counseling is a communication process.” It combines the hard science of looking at test results and data with the social science of working with patients and families, and educating the family about what results mean.
So what is the role of a genetic counselor at a health plan? Lewis works with medical directors, developing policies on counseling and testing, reviewing requests for tests to ensure they make sense, and hearing grievances, which, ironically, is one of the best parts of her job. “It’s those outlier cases that bring to our attention things we might have missed during the normal processing,” she said. Change comes from those outliers, she said.
Genetic counselors can help a health plan bring order to a realm where tremendous opportunities for profit can lead to poor, uninformed choices by doctors and patients—especially as testing
incidents make their way into the media. Lewis was a counselor for 15 years before joining Priority Health, and she is alarmed when she sees the names of labs popping up that she’s never heard of. “It’s frightening—it’s important to choose a lab where you know you’re going to get a result that’s clinically valid.”
“The time has passed when we can just order from the most convenient lab,” she said later. “We need high-quality labs, but we also need the best price and high quality together.”
Inundated by heavy marketing, patients often demand the wrong test, or use home test kits that produce results they cannot interpret. “A mutation does not always necessarily lead to cancer, and we need to consider what else is going on,” she said. That’s why insurers are moving toward controlling when tests are ordered and encouraging counseling. Despite what some may think, the family practitioner may be ill equipped to order, much less interpret, genetic testresults (Table).
Data show high incidence of the wrong test being ordered, or of full tests being ordered even after a mutation has already been identified in the family. “Seventy-two percent of non-genetics-trained MDs rate themselves as having fair to poor knowledge regarding genetics,” Lewis said.
Top issues for payers, she said, include informed consent, transparency, and better coding. And ensuring access. “You’re going to have to partner, most likely, with a telephonic genetic service to get full coverage.” EBO