Todd Bookman, WHYY, Author at ��ϳԹ�� News

Genetic Counselors Struggle To Keep Up With Huge New Demand

Todd Bookman, WHYY — Mon, 18 Apr 2016 09:26:12 +0000

Erika Stallings’ mom was diagnosed with breast cancer at the age of 28. When it came back in her early 40s, her physicians started looking for clues.

“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,” said Stallings.

BRCA1 and BRCA2 are genes. 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 had a 50 percent chance of inheriting a mutated BRCA2 gene.

But Erika was only 22 years old when she learned of her mother’s diagnosis 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 said. “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 called to make an appointment and was told she first needed to meet with a genetic counselor. The first available appointment was the following May.

This five-month wait was unexpected and unwelcome.

“It just sort of adds a level of stress to something that is already stressful,” Stallings said.

Genetic testing can help diagnose a disease and estimate your future risks, based on DNA. It can even help patients and doctors . It came on the scene in the late 1960s and was employed mainly to screen prospective parents and newborns for deadly inherited diseases like .

In the early 1970s, scientists identified the extra copy of a chromosome that causes , and also realized that a fetus’ genes were present in amniotic fluid that could be extracted through amniocentesis. By the 1980s, prenatal screening was common for conditions like Down syndrome and cystic fibrosis, and the field of genetic counseling developed to help people understand their options.

The sheer number of genetic tests has exploded in the past decade or so. There are now testable genetic disorders. In fact, demand for genetic tests has been strong since 2013. And there are two main reasons for that.

“The first was the Supreme Court decision that patenting of genes was no longer an option,” says Joy Larsen Haidle, a genetic counselor and past president of the

In that case, the Supreme Court that Utah-based testing company Myriad Genetics, which developed the BRCA gene tests, couldn’t naturally-occurring DNA. 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 in The New York Times disclosing her “faulty” BRCA1 gene, and her decision to have a double mastectomy to reduce her breast cancer risk.

“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,” said Haidle.

She said people became much more willing to talk about their genetic predispositions and seek out testing for conditions like Alzheimer’s disease and cystic fibrosis. The number of patients seeking genetic counseling and testing has increased dramatically, according to a 2014 that looked at how Jolie’s announcement affected interest in testing.

When Erika Stallings was 22, she found out that she might have a genetic mutation that greatly increased her risk of cancer.

But the number of genetic counselors, the people who help both doctors and patients make sense of these tests, hasn’t expanded enough to keep up with that demand. There are just 4,000 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,” said 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.

Clients typically are offered genetically counseling both before and after a test. They discuss the tests, what they may reveal and what the gray areas might mean. Each counseling session lasts between 30 minutes and an hour.

Genetic counselors also are well versed on genetic risk and family history and can help people choose the most appropriate tests.

Haidle pointed 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.

“It is going to take a while before we really have the workforce we need to provide the care that individuals out there need,” said Anne Greb, director of the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College.

Thirty-one universities offer the required two-year master’s program and fewer than 300 counselors will graduate this spring, far short of the estimated 650 current job openings around the country.

“They all get jobs,” said Greb of her graduates. “I get emails or phone calls daily from recruiters looking to hire.”

The average starting salary for a counselor is $65,000 to $75,000. Many insurers, including Medicare, typically don’t cover counseling sessions, meaning hospitals must 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 that anyone interested in getting a BRCA test had to first meet with a counselor, even if a doctor already approved the screening. The move was intended to limit unnecessary tests and save money.

Erika Stallings tested positive for the BRCA2 mutation. She said her genetic counselor helped her make sense of the results.

“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,” she said.

Stallings decided to have a preventive double mastectomy in 2014 at the age of 29. She’s now volunteering with a breast cancer awareness group, sharing her genetic story with more women.

This story is part of a reporting partnership with NPR, WHYY’s health show and .

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Insurer Uses Patients’ Personal Data To Predict Who Will Get Sick

Todd Bookman, WHYY — Mon, 08 Jun 2015 21:13:15 +0000

The first thing out of John Iovine’s mouth is an apology.

“You got to forgive me if I don’t remember too much,” he says. “I had a stroke.”

Signs of that stroke are everywhere — the bed in the dining room, a shower installed in the pantry. John is thin and sits in blue pajama pants in the wheelchair he uses to get around.

He may, however, have overstated his memory problems.

“We went to Harding … that’s the school right up here,” he says. It was 1952, and that’s where he saw the woman who would become his wife — “this girl, in this long red sweater, and her red hair. And I said, ‘That’s the girl for me,’ ” he says of Carol Iovine.

“I came out on top,” he says, laughing.

Carol, who is sitting next to her husband, explains that John’s stroke came in the middle of a bad run of health. First, he developed an ulcer, she says. Then he needed an abdominal surgery. After that came the stroke — and more.

“He had pneumonia, jaundice, sepsis; clot in the right lung,” she adds. All of that hit between October 2013 and January 2014.

John, a former house painter, spent 79 days in the hospital — some of that unconscious, and nearly all of it stuck in a bed.

“Aw, man — it was hell,” he says.

Sink or Swim

John Iovine finally went home in April 2014, after several months in a rehab facility.

And this point in patients’ recovery — when they’ve been discharged and have to sink or swim on their own — is the stage that everyone in the health system is paying special attention to right now. For too long, too many people like John Iovine would take a dive at this stage and end up back in the hospital again.

The industry calls these returns to the hospital , and they are a huge drain on finances, costing Medicare alone $15 billion annually. That’s why Medicare launched an initiative a few years ago that penalizes hospitals that see too many patients readmitted too soon. And in turn, that spurred many hospitals to pay more attention to the problem.

Now insurance companies are also taking a stab at a solution.

“We are trying to identify which patients are likely to be hospitalized in the next three months — so that’s our target,” says . He’s the chief informatics officer for Independence Blue Cross, a Philadelphia-based insurance firm.

Independence Blue Cross, he says, is working to identify all those among its customers who are sick or frail enough to be on the edge of hospitalization.

To do so, the company runs algorithms on the huge amounts of health data at its disposal: billing claims, lab readings, medications, height, weight and family history. It also throws in information about the client’s neighborhood, including poverty rates.

“The health care data we provided to build these algorithms is equivalent, I think, to [all the data in] five Wikipedias,” says Nigam.

The computer algorithm sifts through all that information and pops out a score for each individual patient, identifying those it deems at highest risk.

Independence Blue Cross then assigns each high scorer a staff member — what it calls a “health coach,” who will work at no charge to the client to see what extra services may be helpful.

“This coordinated effort then works for the patient,” Nigam says. The coach may assemble health information tailored to the patient’s needs; make medical appointments; resolve medication issues, or maybe help arrange transportation to the doctor’s office. Sometimes the coach helps arrange for a home care nurse.

“And all of that,” Nigam says, “is beginning to show a pretty significant drop in hospitalization rates in our region.”

Independence Blue Cross has identified 18,000 clients for this sort of extra attention and, as just one sign of success, has already seen a 40 to 50 percent reduction in expected hospital admission rates for people with congestive heart failure.

Early successes include the Iovines.

Life Changing

Carol Iovine’s life changed, too, after her husband’s stroke: She’s having to manage his new medications, and she helps John shower and get to the toilet. They need to hire a wheelchair-accessible van for each appointment and therapy session, and there are many.

She says having the support of John’s health coach has made a big difference in helping her manage her husband’s needs.

“He was supposed to get blood work, and they wanted me to take him to the ER to get blood work,” Carol remembers. ” ‘Uh-uh,’ I said. ‘No way.’ “

She called their health coach Donna Crockett, and told her the problem. “And the next thing,” Carol Iovine says, “a nurse was here taking blood.”

Big picture: The money the health insurance plan spends on having Crockett arrange a visiting nurse, or streamline appointments is nothing compared to the cost of a hospital admission.

Writing the Rules

That promise of savings has a lot of health care specialists taking a harder look at the useful potential — and possible drawbacks — of these predictive computer formulas.

“There is a lot of interest in the area right now,” says , a professor at Harvard’s law school, who has written about the legal and ethical concerns raised by the collision of health care and big data. “It is a great coming together of the health care world and the computer science world, as well as the patient experience world.”

Still, he has some qualms.

“There are questions of whether people whose data is going to be used to build the engine have the right to opt out,” Cohen says. “Do they have to affirmatively opt in? Do they have to even be notified it’s being used?” These are still gray areas, he says.

The field is so new it doesn’t yet have established standards for how this information should be handled, Cohen says.

Independence Blue Cross says it follows regarding anonymity, and is only using the information to better serve its members. But it doesn’t ask the clients who subscribe to its health plans if they want to opt in.

“The data is only used to improve or coordinate care,” Nigam says. “And that is something that you would agree is our role.”

Health-wise, coordinated care seems to have made all the difference for John Iovine. He hasn’t been hospitalized in the year since Independence Blue Cross assigned him a health coach.

The insurer says the early results from its hospitalization efforts are so promising that the company is expanding its efforts. The firm is partnering with New York University’s Langone Medical Center on a next target — Type 2 diabetes. The goal is to spot those most at risk of getting diabetes before they start showing symptoms — and then intervene, in hopes of preventing the illness.

This story is part of a partnership that includes , and .

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