It's a few minutes before services on a Sunday morning at Bethany United Methodist Church in West Jefferson, N.C. The handbell choir warms up and an acolyte lights candles.
Church member Peggy Lynn Gibson walks in
with her dog, a stout, cream-colored golden retriever named Rocky. The
congregants greet Rocky like an old friend.
"How are you? You're a
sweetheart," one man says to the dog. "And so are you," the man
tells Gibson.
Pastor Dan Money welcomes the congregation
as Rocky, an honorary church member, settles in at Gibson's feet in a pew near
the back.
"We love Rocky, right? And we love
Peggy," Money says from the pulpit on the day NPR visited.
Gibson, a 67-year-old retired nurse, is one
of more than a million Americans with Type 1 diabetes, a difficult-to-manage
autoimmune disease. People with the disease face a constant struggle to control
the amount of sugar in their bloodstream. If it gets too low, it can lead to
seizures, loss of consciousness, or death.
And Rocky was there to help. He's a
diabetic alert dog specially trained to smell dangerous changes in someone's
blood sugar and alert them with a paw or a nudge before it becomes a medical
emergency, and he was a gift from the church community. A chili lunch, a silent
auction, even a concert by local musicians all helped with his $15,000 price
tag.
Back at her home just outside West
Jefferson's picture postcard downtown, Gibson talked about why she sought
canine help.
"In these senior years, it became
harder to recognize whether my blood sugar was going too high or whether it was
going too low. That was partly what prompted me to look into getting a diabetic
alert service dog," she says.
But while Gibson obviously loves Rocky, he
doesn't provide the service she and her neighbors paid for. Unfortunately, that
may be par for the course. The diabetic alert dog industry is unstandardized
and largely unregulated. And the science on a dog's ability to reliably sniff
out blood sugar changes is, at best, inconclusive.
Hope and hype
Gibson says she was influenced by the
online marketing campaign of Diabetic Alert Dogs of America, the Nevada company
that sold Rocky.
"They have their stories on there
about the dogs they've trained and the people they've placed them with. And,
you know, it [seemed] sound to me," Gibson says.
If you research diabetic alert dogs, you'll
find a lot of hope for their role in managing Type 1 diabetes. And you'll find
a fair amount of hype.
Television news stories about the dogs
often uncritically accept their abilities, using words like
"incredible" and "amazing." In fundraising campaigns,
would-be alert dog owners position them as critical solutions to their disease.
NPR reviewed nearly 500 active GoFundMe
campaigns that mention "diabetic alert dog." More than a third used
phrases like "lifesaver" or "lifesaving."
Dog training companies make similar claims.
Several of them have faced lawsuits or complaints recently from consumers who
bought diabetic alert dogs that they say don't work.
In Texas, a group of more than a dozen dog
buyers sued a trainer for fraud and won a judgment for $800,000. In Virginia,
the attorney general sued a service dog vendor after customer complaints about
its dogs, which were marketed as "backed by science" and "100
percent effective."
The Virginia attorney general claimed that
the company, Service Dogs By Warren Retrievers, deceived consumers about the
animals' abilities and cost, in many cases simply selling "a $25,000
pet." Company lawyer Glen Franklin Koontz tells NPR his client denies the
allegations and calls the lawsuit "baseless." He stands by the
"backed by science" claim and adds: "A fully trained dog is 100
percent effective."
The reason it might take a lawsuit to fight
back against perceived or actual shortcomings in an alert dog is that trainers
and dogs generally aren't required by any authority or regulator to perform to
any particular standards.
While Rocky was marketed as a
"certified" alert dog, the certification came only from the company
that sold the dog. Soon after Gibson got Rocky, it was clear to her that he
wasn't cut out to be a service dog in public, especially in the windy high
country of North Carolina.
Gibson says Rocky is easily frightened by
common noises such as umbrellas opening and motorcycles passing, and can't work
as an alert dog while he's scared.
"The first day that I had him out on
my own, the wind blew up. He got so scared that he couldn't run fast enough to
try to hide," Gibson says. "It was just pure fear."
That was in April 2017, right after she had
to sign a series of disclaimers as a condition of getting the dog. One document
said Rocky "met her expectations as a diabetic alert dog," even
though she had only two days' experience with him.
Another document said Rocky has a
"free will" and wasn't guaranteed to do what Gibson and her community
paid $15,000 for: alert her to blood sugar changes.
"I answered everything because I was
so excited that he was there and I was positive," Gibson says. "I was
hoping everything was going to be wonderful and then after the dust settled,
everything wasn't wonderful."
One paper she signed said Rocky wasn't
guaranteed to "perform any specific action at any specific time."
The sweeping disclaimer might sound at odds
with an expensive purchase that people trust with their lives. But research on
alert dogs suggests it might also be a reality check about the abilities of
diabetic alert dogs in general.
What the science says
University of Virginia psychologist Linda
Gonder-Frederick tracked the performance of 14 diabetic alert dogs in a 2017
study. Before the study, their owners believed the dogs would prove more
accurate than their glucose monitor devices. That didn't happen.
"Overall, they really were not that
reliable or accurate," she says.
Of 14 dogs in the study, only three
performed better than statistical chance. That's similar to what an Oregon
researcher reported in 2016. The dogs in that study detected low blood sugar
events 36% of the time. They also had false positives. Only 12% of the dogs'
alerts happened during actual low blood sugar events.
Gonder-Frederick says some dog owners
overestimate their beloved dogs' talents, perhaps as they would a favored
grandchild.
"People might notice and remember when
the dog is accurate much more easily than they would notice or remember when
the dog was not accurate," she says. "You find a person who believes
very strongly in their dog, when in fact maybe the dog's right half the
time."
The psychological process at work, she
says, is a kind of confirmation bias.
Her research also contradicted what some
believe — or hope — is true: That the dogs can be a good safety net for those
who worry about blood sugar dropping as they sleep. Some parents have turned to
the dogs to safeguard their children during the night.
"The accuracy just plummeted during
the night. Dogs have to sleep too. Obviously, a dog cannot work 24/7,"
Gonder-Frederick says.
There's not too much other research, but
what does exist isn't more encouraging. A study published in 2015 and a 2019
British study did find good performance but involved possible conflicts of
interest. Both studies were co-written by the dogs' trainers or suppliers.
Authors of both articles tell NPR the arrangements did not amount to conflicts
and didn't bias the studies.
A trainer's guarantee
Edwin Peeples, who co-owns Diabetic Alert
Dogs of America, says he has trained nearly 700 dogs and more than 9 out of 10
of his clients are satisfied.
He says issues like Gibson's — where a dog
can't perform well in public — represent the toughest part of training an alert
dog, and that he does his best to train the dog to work in the owner's
environment. And for dogs that don't work out, Peeples says he has a training
guarantee.
"They can bring that dog to my
doorstep right here in Las Vegas," Peeples says. "Our response will
be: I will do my absolute best to try to fix it, and if I can't, you get a
brand-new dog."
But Jessica Moye, an Ohio mom with Type 1
diabetes, had a long-running dispute with Peeples and now helps run a Facebook
group dedicated to complaints about Peeples' company. She says the replacement
dog guarantee can mean little when there's a child involved.
Jessica Moye spent $11,000 on Hachi,
who Moye says has not been reliable as a diabetic alert dog.
Maddie McGarvey for NPR "The child
bonds with the dog, and then they have to choose whether or not to send the dog
back and start over again, looking for that lifesaving alert," Moye says.
"Or if they just let their child go on with life with this dog, regardless
of the fact that it isn't working for them."
Moye got her dog, Hachi, in 2016 and paid
Peeples' company $11,000 for him. Hachi was supposed to paw her if her blood
sugar was out of range.
"Hachi was never a reliable alerter.
If I got into his face and asked for the paw, sure, he would give me his
paw," Moye says. "But there was never any link to the scent of my
breath and whether my blood sugar was high or whether my blood sugar was
low."
A book from Diabetic Alert Dogs of America
sits in the home of Jessica Moye, who purchased her dog Hachi from the company.
Maddie McGarvey for NPR
When Peeples agreed to refund some of her
money, it was conditioned on her signing a nondisclosure agreement barring her
from discussing the company with others. He says he required the agreement
because he didn't want it publicly known that he was providing a refund. She
refused to sign, leaving several thousand dollars on the table.
Now, through the Facebook group, Moye says
she's heard from dozens of Peeples' clients. Some have struggled with dogs that
are too aggressive or have other problems. Some are happy.
A happy paradox
While researchers have found little
evidence that dogs can reliably sniff out blood sugar changes, they have
encountered a kind of paradox: People who get alert dogs tend to do better with
their diabetes.
"They may just be more engaged with
their diabetes," says Gonder-Frederick, the researcher. "They may be
checking their blood glucose much more often than they used to. The dog is sort
of a pleasant reminder of diabetes."
Jessica Moye spends time with Hachi
in her yard outside Columbus, Ohio, on Oct. 30. Moye helps run a Facebook group
dedicated to complaints about the company Diabetic Alert Dogs of America.
Maddie McGarvey for NPR
Sitting at her kitchen table with Rocky at
her feet, Gibson says the dog has helped her feel less alone with her disease.
That's despite the fact that, she says, he
doesn't work well when he's scared from a thunderstorm or some other noise, and
doesn't alert her to blood-sugar changes at the rate she says the vendor
promised - 80 percent of the time. Also, she complains that he was trained to
alert her by jumping on her, and she says he's more than half her weight.
Still, Gibson says: "There will be
just times that he'll come and put his head on my leg and just look up at me, —
as if he understands in some way what I'm going through. He's always there for
me."
But, she says, "I felt sorry that
Rocky as an animal was chosen to do a job he wasn't equipped to do. That's not
fair to the animal. Neither is it fair to me as the recipient of a $15,000
specially trained dog that isn't capable of doing his job."
She says she plans to try to retrain Rocky
herself, and despite his "guarantee," she has no plans to send him
back.
Huo Jingnan and Cat Schuknecht contributed
to this story.