A shortage means long wait times for some patients.
The first time Erika Stallings’ mom had breast cancer, in the early 1990s, doctors didn’t yet have the ability to test for the role genes may have played in her developing the disease. But 14 years later, in 2007, she had a recurrence.
“That’s when the doctors realized there may be something genetic going on, and that’s when she was tested, and found out she was a carrier for BRCA2,” says Stallings.
BRCA1 and BRCA2 are genes found on our 17th chromosome. Carrying a mutated BRCA gene increases a person’s risk for developing certain cancers, including breast and ovarian cancer.
Because Erika Stallings’ mom tested positive, Erika has a 50/50 chance of inheriting a mutated BRCA2 gene.
But Erika was only 22 years old at the time, and not yet ready to put herself through the testing process.
“I had just gotten accepted into law school, I was going to be moving to D.C., my ultimate goal was to get a job and move to Manhattan,” she says. “I don’t want to say I pushed it to the back of my mind, but it didn’t seem super pressing.”
Fast forward a few years, her law career and her New York life are settled, and she has a supportive boyfriend. She says she finally felt ready to take the BRCA test, and deal with the potential results. In December 2013, Stallings calls to make an appointment at a well known facility in New York, and is told she first needs to meet with a genetic counselor.
But the first available appointment wasn’t until the following May.
After working up the guts to finally make the call, this five-month wait was unexpected, and unwelcome.
“It just sort of adds a level of stress to something that is already stressful.”
A surge in demand
Genetic testing has the ability to shed light on complex medical conditions. Test results can help diagnose a disease, estimate your future risks, based on the DNA passed down from your parents, and it can be used to select the best precision medicines.
The shear number of genetic tests has exploded in the past decade or so. There are now thousands of different testable genetic disorders.
But the field of genetic counseling, the people who help both doctors and patients make sense of these tests, hasn’t expanded fast enough to keep up with demand. There are just 4,000 certified genetic counselors in the country today. That’s one for every 80,000 Americans.
“As genetic testing is growing and becoming more widely adopted by everyone for all sorts of different things, not just pregnancy, but cancer, heart disease…there is a disconnect,” says Neha Kumar, chief product officer at Recombine and a trained genetic counselor. “Who will actually interpret and provide those results to patients?”
Recombine offers a screening test for more than 250 genetic diseases parents may pass on to a child, including conditions such as Cystic fibrosis and Tay-Sachs Disease.
Clients are offered both pre- and post-test genetic counseling, to discuss what the tests are, what they may reveal, and what the gray areas might mean. Each counseling session lasts 30 minutes, but can stretch as long as an hour.
It’s the type of thorough conversation most doctors simply don’t have the bandwidth for.
“Because their time with a patient is so limited, do they have 30 extra minutes to go over the genetics and specific diseases?” asks Kumar.
Genetic counselors also have a unique understanding of what the right screenings may be given a patient’s family history, and can help prevent the wrong test from being ordered.
Up until recently, the workforce was keeping up with increased demand for their services, but in 2013, two events rattled the industry.
“The first was the Supreme Court decision that patenting of genes was no longer an option,” says Joy Larsen Haidle, past president of the National Society of Genetic Counselors.
She’s referencing the Supreme Court’s ruling that Utah-based testing company Myriad Genetics couldn’t claim ownership of BRCA1 and BRCA2 testings. Almost immediately, other, cheaper tests for these mutations came to the market.
And that same year, Angelina Jolie captured the world’s attention with her op-ed in the New York Times disclosing her “faulty” BRCA1 gene, and preventative double mastectomy.
“Her sharing that information was really important because it allowed people to identify with her story. If it could happen to Angelina Jolie, it could happen to me,” says Haidle.
In the immediate weeks and months following her announcement, the number of patients seeking genetic counseling and testing increased dramatically.
“And it took several months for that increase to plateau, but it plateaued at a rate that was significantly higher than exactly one year prior.”
They all get jobs
Demand for testing has remained high since Angelina Jolie’s disclosure, but Haidle points out that for lots of patients, especially those not getting breast cancer screenings, the current genetic counseling workforce is meeting demand: appointment wait times are often just a week or two.
Still, the field is facing a bottleneck as it works to increase the number of certified counselors.
“Unfortunately, it is going to take a while before we really have the workforce we need to provide the care that individuals out there need,” says Anne Greb, director of the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College, the country’s first and largest genetic counseling training program.
There are only 31 universities offering the required two-year master’s program, and less than 300 counselors will graduate this spring, far short of the estimated 650 current job openings around the country.
“They all get jobs,” says Greb. “I get emails or phone calls daily from recruiters looking to hire.”
The average starting salary for a counselor is $65,000-75,000. Many insurers, including Medicare, typically don’t cover counseling sessions, meaning hospitals can be forced to cover a share of the costs of having counselors on staff.
One insurer is taking the opposite approach, though. After the Angelina Jolie spike, Cigna began mandating that anyone interested in getting a BRCA test had to first meet with a counselor, even if a doctor already approved the screening.
That didn’t sit well with some doctors’ groups, who saw the move as a barrier to care.
Not surprisingly, genetic counselors including Stephanie Winheld at Thomas Jefferson University Hospital applaud the move.
“I don’t see that as a barrier,” she says. “I think that it is really important for patients to get upfront counseling so that they know what they are getting themselves into.”
Case in point, Winheld notes, are the at-home genetic testing products such as 23andMe, where you give them a little spit and they give you your risks for conditions ranging from Bloom Syndrome to hereditary hearing loss.
Winheld says patients who try to research genetic test results on their own don’t always interpret what they find correctly.
“With Googling things, you either see the very, very bad or the very, very good. And you don’t really see that middle.”
For Erika Stallings, the New York lawyer, her genetic counseling experience was helpful once she finally got in to see someone. Like her mother, she tested positive for a BRCA2 mutation. Her counselor spent time going through her options, and connected her with outside therapists, surgeons and other supports.
“I just always tell people, it’s not just enough to know you are positive. You have to see someone who can put those results in context with you,” says Stallings.
With the backing of her counselor, Stallings decided to have a preventive double mastectomy last December at the age of 29. She’s now volunteering with a breast cancer awareness group, helping to share her genetic story with more women.