Elizabeth Newman
Elizabeth Newman

Genetic testing can be fraught, especially for patients with certain cancers. The reason is that genes don’t only belong to us, they’re what we pass down to our children and grandchildren. Finding out you have a genetic mutation is a bit similar to mothers who smoked during pregnancy 40 years ago: You don’t know what you don’t know.

More knowledge in certain situations causes sleepless nights — just ask anyone who has received a certain diagnosis and hit Google. But all of that said, this week’s news about how there will be Medicare reimbursement for hereditary cancer-related disorders, under a new CPT code for multi-gene panels, gives more options to some long-term care residents.

To back up, both the science and the business of genetic tests are complicated, but they can be summarized as a long-running debate over patent infringement.

The takeaway is that the doors have now opened for more than one company to provide genetic tests. That competition means broader panel testing, more credible technology and ultimately “better quality product at better choices,” says Randy Scott, chairman and CEO of Invitae. His company’s goal is to aggregate most of the world’s genetic tests into a single service with a faster turnaround and lower price.

Here’s a scenario of how this could benefit a long-term care resident in your facility: A 76-year-old woman has been diagnosed with breast cancer, which is the same diagnosis that killed her sister at age 38. The results of the genetic tests could make a difference in treatment decisions, such as whether to perform a double mastectomy or a lumpectomy. Previously, she may have only been able to find out if she was BRCA1 or BRCA2 negative.

Why does expanding beyond BRCA1 and BRCA2 matter? On a practical level, multigene testing has found that women negative for those mutations can have other problems, such as Lynch syndrome genes, which increase ovarian cancer risk. In a study last year by JAMA Oncology, more than 1,000 women were given multigene panel testing. While 40 (3.8%) were negative for BRCA1 and BRCA2, they had other harmful mutations.

“Multigene panel testing for patients with suspected HBOC risk identifies substantially more individuals with relevant cancer risk gene mutations than does BRCA1/2 testing alone,” study authors note.

Here’s a possible huge connection for providers: “Identifying such mutations is likely to change management for the majority of these individuals and their families in the near term, and in the long term should lead to development of effective management guidelines and improved outcomes for at-risk individuals.”

Genetic tests should be billed under current procedure terminology code 81432 and payments are made by Noridian. That code should be used for tests on sequencing which include BRCA1, BRCA2, and 12 other genes relevant to breast and ovarian cancer risk, regardless of whether a single gene or multiple genes are selected for testing. CMS will set final pricing for this new code later in 2016.

One thing Scott cautions against is looking at more genetic information as a sign of providing services for those who want to go down a genetic rabbit hole of paranoia.

“We’re not focused on health individuals who are curious,” Scott said. “We’re helping people with significant family histories.”

Which takes us back to the critical point: There are plenty of seniors who believe they’ve made it through many decades without looking at their genetic make-up, and that whether they are 65 or 95, they are not interested in results. But they may want to have information to give their children, and providers have an obligation to make sure they have all the facts.

“The concept of a good healthcare legacy is to know what family risk may incur,” Scott said. “We’re amazed at how many people have family histories who have never bothered to get tested.”

Going for testing is of course a personal decision — but it is worth making sure seniors understand how their genes carry on after they do.

Follow Senior Editor Elizabeth Newman @TigerELN.