MEDICINE’S FUTURE
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Dr. Debra Leonard, below, is leading a genome
screening project at the UVM Medical Center,
which is one of the few hospitals in the nation
undertaking such an effort. Inset: Leonard
checks her genome information online.
MEDICINE¡¯S FUTURE
University of Vermont Medical Center blazes trail to map patients¡¯ genetic makeup and avert
disease. Story by Dan D¡¯Ambrosio, 2A
(ABOVE) GLENN RUSSELL (INSET) DAN D'AMBROSIO/FREE PRESS
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Dr. Debra Leonard is leading a genome screening project at the University of Vermont Medical Center in Burlington, one of the few hospitals in the nation undertaking such an effort. In the UVM
Medical Center project, 70 volunteers are having their entire genetic makeup screened for 1,200 diseases and conditions.
Genomes unlock mystery of diseases
UVM Medical Center launches genetic
screening with eye toward the future
DAN D¡¯AMBROSIO
FREE PRESS STAFF WRITER
DAN D'AMBROSIO/FREE PRESS
Dr. Debra Leonard, director of the genomic medicine program at The University of Vermont
Medical Center, checks her genome online.
Michael Towle made the
long walk down Colchester
Avenue to get the results
of his genetic testing on a dreary, drizzly
day in April.
¡°I was more anxious than I thought I
would be,¡± Towle said. ¡°On the way there I
was thinking, ¡®Do I really want to go to this
appointment?¡¯¡±
The cause of Towle¡¯s angst was simple:
The results of sequencing his genome
could reveal he¡¯s likely destined to get
Alzheimer¡¯s disease or some other life-altering malady.
Towle, network business director at
the University of Vermont Medical Center, is one of 73 volunteers from the hospital staff to take part in a pilot project intended to launch UVM Medical Center¡¯s
new initiative to embrace genomic
screening as a path to better medical care.
Towle had the option to only learn
about conditions he could do something
about, or to learn it all. He chose the latter.
¡°I came back very clean, which is
great,¡± Towle said. ¡°I left there very relieved.¡±
Six of the volunteers were less fortunate. They received ¡°difficult¡± news, according to hospital spokesman Michael
Carrese. None of the six were willing to
talk about what they had learned, because
they were still absorbing the news, and in
some cases, still needed to talk to family
members, Carrese said.
The weight of genetic knowledge includes not only diseases and conditions
you are likely to get, but also which mutated genes you could pass on to your chilSee GENOME, Page 4A
4A
SUNDAY, JUNE 5, 2016
vermont
Genomes
Continued from Page 2A
dren, resulting in diseases
such as cystic fibrosis.
Towle prefers to see this
knowledge as power rather than tragedy, allowing
him to make more informed decisions.
The results of genomic
screening are not all
heavy, either. Towle, for
example, learned he is unable to taste bitterness,
which explained his predilection for IPA beers.
¡°They don¡¯t taste bitter
to me,¡± he said.
Welcome to the future
of medicine.
¡®I almost fell out of
my chair¡¯
Dr. Debra Leonard is
the director of the Genomic Medicine Program at
the University of Vermont
College of Medicine. She
came to Burlington three
years ago from Weill Cornell Medical College in
New York, after, she said,
she realized that hospital
didn¡¯t share her vision for
comprehensive genomic
testing. Leonard received
index
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a very different reception
from Dr. John Brumsted,
president and CEO of The
UVM Medical Center and
The UVM Health Network.Leonard told Brumsted
she wanted to develop a
program she called ¡°Genomes for All.¡± To do that,
she would need a big lab.
¡°I said, ¡®Every lab I¡¯ve
worked in so far, as soon as
it¡¯s built it¡¯s too small already,¡¯¡± Leonard remembered. ¡°I said, ¡®What I am
imagining is we are preparing for the time in 10
years when we will be sequencing the genome of
every patient who comes
to the hospital.¡¯¡±
Leonard prefaced her
remarks by warning,
¡°Don¡¯t fall out of your
chair.¡±
Brumsted
remained in his chair, and
told Leonard he agreed
with her.
¡°At which point I almost
fell out of my chair,¡± Leonard said. ¡°Because I¡¯d never had someone who understands how fundamental the genetic information
is.¡±
Taking a patient¡¯s genetic information is no different than taking her
blood pressure, temperature, heart rate, height
and weight, Leonard said.
¡°It provides basic information that for some people is useful now,¡± she said.
¡°For other people we don¡¯t
know enough yet to understand what it might mean,
especially for healthy people, but for those with disease risks driven by genetic differences in their genomes, it can be helpful.¡±
A shift in foundation
Brumsted sees Leonard¡¯s vision as nothing less
than a shift in the foundation on which the hospital
practices medicine and delivers care.
¡°Take a step back and
look at where health care
is going,¡± Brumsted said.
¡°We¡¯ve long been set up to
take care of individuals
with a problem, a chronic
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Sequenced at birth
A new normal
Leonard enlisted the
help of Illumina, based in
Dr. Leonard and her
husband,
photographer
DAN D'AMBROSIO/FREE PRESS
Michael Towle, network business director at the University of
Vermont Medical Center is one of 73 volunteers to have his
genome sequenced.
illness, cancer, a heart ailment. We need to keep doing that really well. But we
also need to move much
more into keeping people
healthy, preventing them
from ending up with a malady.¡±
Brumsted believes genomics will play a big role
in that shift.
¡°We¡¯re already starting
to see a move toward more
personalized care of individuals, first in cancer,¡± he
said. ¡°We can take bits of a
tumor or cancer and based
on the genetic makeup of
the individual and that
cancer you can tell which
chemotherapy might be
advantageous,
which
could be detrimental, and
how much chemotherapy
to use.¡±
The scope of disorders
for which the hospital will
be able to tailor its therapy
to individuals will increase
rapidly, in Brumsted¡¯s opinion. One example: Rather
than recommending colonoscopies for everyone
over the age of 50 ¡ª now
the standard of care ¡ª genetic screening could lead
to perhaps only one-third
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corrections
or one-half of the population requiring colonoscopies, based on an analysis
of their genomes.
¡°Think of the savings in
health
care
dollars,¡±
Brumsted said.
Genomes for All could
also help doctors identify
the health risks their patients face in advance, allowing patients to change
their lifestyles in hopes of
preventing disease.
¡°That¡¯s keeping the
population
healthy,¡±
Brumsted said. ¡°All of that
has to be done on a backdrop of privacy of information, just like we have
now, with a lot of rules and
regulations around how
we handle personal health
information.¡±
Construction on the $2.5
million lab Leonard wanted begins in two weeks
within existing space at
the hospital, Brumsted
said. The lab should be up
and running by the end of
the year.
San Diego, for the pilot genome project at UVM
Medical Center. A publicly
traded company with
some 5,000 employees and
offices from Singapore to
Sao Paolo, Illumina generated revenues of $1.6 billion in 2015.
Dawn Berry, Illumina¡¯s
vice president of applied
genomics, said no other
hospital she knows of is
planning quite the push
into genomics as UVM
Medical Center is, including the use of genetic counselors to make sure patients understand the context of their results.
Berry envisions a future when people will have
their genomes sequenced
at birth, and then use that
information throughout
their lives to fend off illness and better treat disease.
Illumina subsidized the
cost of genomic screening
for UVM Medical Center¡¯s
pilot project at $2,900
each, compared to the
$7,000 to $10,000 price tag
common in the marketplace, Berry said.
¡°We think it¡¯s very important to allow professionals the opportunity to
put themselves in patients¡¯
shoes,¡± she said.
Currently,
insurance
doesn¡¯t cover the cost of
sequencing an entire genome, according to Towle,
the UVM Medical Network business director. Insurance often will cover
certain sequencing if
there¡¯s a clinical reason for
it, such as determining
whether someone carries
the genes for breast cancer. Towle believes that
with more sophisticated
data, and more proof that
genomic screening can
lower the cost of health
care, insurance companies
could come around to covering complete genome sequencing.
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Greg Merhar, were among
Illumina¡¯s first clients;
they gave each other genomic screenings as Christmas gifts in 2014 at a cost
of $5,000 each. The investment paid off handsomely,
when Merhar, a serious
runner, learned that a lifetime of struggles with
stomach problems and
swollen Achilles tendons
and ankles, among other
ailments, was because of a
condition known as Familial Mediterranean fever.
Merhar¡¯s condition had
gone undiagnosed, or misdiagnosed, for decades.
One orthopedist wanted to
cut off his heel bone, move
it over and screw it back on
to fix his chronically swollen ankle. Merhar opted
for a brace on his ankle for
a year to take down the
swelling.
Once his genome revealed the true cause of his
trouble, Merhar began taking small doses of a prescription drug, Colchicine,
which has been used for
centuries to treat gout.
¡°I took a dose on a Friday night,¡± Merhar said.
¡°Honestly I was feeling
way better the next morning. After two days, I was
pretty much pain-free.¡±
After several weeks,
Merhar¡¯s Achilles tendons
looked normal. He hasn¡¯t
had an abdominal attack ¡ª
which he described as like
swallowing a basketball ¡ª
since last August, when he
started taking Colchicine.
He no longer fidgets from
constant pain in his back
and hips.
¡°Now I feel what normal is like,¡± Merhar said.
¡°Going from where I was
to normal is a miracle to
me.¡±
Contact Dan D¡¯Ambrosio at 660-1841 or ddambrosio@.
Follow him on Twitter at
DanDambrosioVT.
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