Encouraged by new rules from the Trump administration, doctors and nurses across the country have been conducting a flurry of virtual visits with seniors covered by Medicare, which normally will only pay for in-person visits.

But genetic counselors have been effectively blocked from serving seniors amid the coronavirus pandemic. That’s because genetic counselors now relegated to working from home can’t meet the longstanding Medicare requirement that a physician be physically present to supervise the visit in order for it to be conducted and paid for.

Genetic counselors are responsible for walking people through every step of the process of taking a physician-ordered genetic test, interpreting the results, and then making decisions about follow-up care. Today, they’re “basically shut off from providing services to Medicare beneficiaries,” said John Richardson, director of government relations and advocacy for the National Society of Genetic Counselors.


Richardson’s organization is lobbying to get around that obstacle. NSGC has filed requests with the regional offices of the Centers for Medicare and Medicaid Services requesting what’s known as a Section 1135 waiver, which would lift the Medicare requirement for physician supervision of these visits.

The organization has also been pushing a bill — introduced last year by Rep. Dave Loebsack, a Democrat from Iowa — that would make a legislative fix. But that seems unlikely to be taken up soon with Congress focused on saving the imploding economy before heading into a recess.


The stakes can be high: Genetic counselors specialize in helping people make decisions around the genetic tests that report on risks for serious medical conditions and certain medications used to treat them. They might help a woman decide whether to get a mastectomy if her genes put her at elevated risk for breast cancer, or advise a man about whether his DNA could raise his chances of experiencing side effects while taking a new cardiovascular drug.

Some of these decisions can wait, but others cannot — especially if seniors are advised to stay home for many months.

The U.S. has over 5,000 certified genetic counselors. Many of them meet with patients on site at large physician practices and hospitals, or consult with them remotely for genetic testing companies. During the pandemic, genetic counselors who normally work at hospitals including some that are being inundated with Covid-19 patients, are being asked to work from home.

Some of that work is proceeding relatively unimpeded during the pandemic: Although they can’t work with seniors from home, counselors who work for practices and hospitals can conduct video visits with younger people who are covered by commercial insurers such as Aetna and United. And at the population health company Color, genetic counseling is billed as part of a single service that is included with testing and isn’t impacted by the Medicare restrictions, according to company spokesperson Ben Kobren.

In theory, seniors covered by Medicare can still receive genetic counseling from a physician, either through a virtual visit or an in-person appointment. But health officials have advised older Americans over age 65 to stay home. And physicians across many specialties are already flooded with queries from people worried about Covid-19 and are also adjusting to the challenges of delivering routine medical care remotely. Many may not have the bandwidth or expertise to have an in-depth conversation about genetic risks.

That’s where genetic counselors are needed to come in, Richardson said. The fact that they can’t stems from the Social Security Act, which was first passed in 1935 and has been amended over the decades, Richardson said. Genetic counselors are not recognized practitioners under that act, which means they are not allowed to work independently when serving Medicare patients.

“The way we talk about it on the Hill is: this is just modernizing Medicare,” Richardson said. “It’s about continuity of care, and care is definitely going to be disrupted if we don’t get the 1135 waiver or if Congress doesn’t act.”

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