MEDICINE’S FUTURE

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SUNDAY 06.05.16

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

The Burlington Free Press

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To notify an editor about a

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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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