By Bram Sable-Smith DECEMBER 12, 2018
Angela
Lautner knew her thirst was unusual, even for someone directing airplanes,
outside in the Memphis summer heat.
“We had
coolers of Gatorade and water for people to always have access to,” Lautner
recalled of her job as a ground services agent. “But the amount of thirst that
I felt was just incredible.”
She had
no appetite and she lost an unusual amount of weight. Then after a trip to the
emergency room, Lautner, who was 22, was diagnosed with Type 1 diabetes. The diagnosis was
life-changing.
To
start, it meant that for the rest of her life she would require insulin
injections every day to stay alive. Unlike Type 2 diabetes, which can sometimes be
controlled by diet, people with Type 1 diabetes need daily insulin injections
to regulate their blood sugar.
Lautner’s
diagnosis also meant she was no longer allowed to become a commercial airline
pilot in the U.S. — a lifelong dream that she was training for in flight school
at the time.
“I
cried harder over losing my dream to fly than I did at the diagnosis of Type 1
diabetes,” Lautner said.
But
after 18 years living with diabetes, Lautner now says the hardest thing about
the diagnosis is accessing insulin — the expensive drug she needs to keep her
alive. She has had to borrow money from her parents to pay for insurance; she
has spent hours on the phone with drug companies; she has switched brands of
insulin to save costs; and she even moved to a new state, Kentucky, with a more
generous Medicaid plan.
Last
year, Lautner noticed other people with Type 1 diabetes tweeting similar
stories under the hashtag #Insulin4All. She read
the stories of Shane Patrick Boyle and Alec Raeshawn Smith, two
men who died because they could not afford their insulin. It was an epiphany.
“I
thought, ‘My goodness, there’s more people than me. I’m not the only one out
here,’ ” she said.
Since
then, Lautner has joined a group of consumer activists, people who need insulin
to live and are angry about the sky-high prices. They are putting pressure on
the three main companies that make insulin: Sanofi of France, Novo Nordisk of
Denmark and Eli Lilly and Co. in the U.S.
Taking
On The Drugmakers
The
cost of insulin nearly tripled from 2002 to 2013 and
has doubled again since
then. The list price is over $300 for a single vial of medicine, and most
people with Type 1 diabetes need multiple vials every month to live. That cost
is typically lower with insurance or with discount programs. Still, for some
people the price is unmanageable.
There’s
been some action by lawmakers on the issue. In October, Minnesota’s attorney
general sued insulin manufacturers alleging
price gouging, and a bipartisan caucus in
the U.S. Congress issued a report in November urging action to bring insulin
prices down.
But
prices are still going up, so consumer activists like Lautner are taking things
into their own hands.
Nonprofit
group T1International, which advocates for Type 1
diabetes around the world, with a particular focus on insulin prices, has
started holding rallies outside the Indianapolis headquarters of pharmaceutical
giant Eli Lilly and Co.
Lautner
joined more than 70 people who came together to demonstrate there in September.
They were asking for three things: transparency about how much it costs to make
a vial of insulin and how much profit comes from each vial, and a commitment
from the company to lower the list price of insulin.
Protesters
hailed from at least 12 states, mainly Ohio, Illinois, Indiana and Kentucky,
but also from as far away as New York. Lautner, who now lives outside
Cincinnati, rented a school bus with a dozen others to make the 112-mile trip.
“Insulin
is kind of the face of the drug pricing crisis in America,” said Elizabeth
Pfiester, founder of T1International who has Type 1 diabetes herself. “We
literally die without it,” she said. “We’re fighting for our lives.”
This was
the third time the group had protested at Eli Lilly headquarters. Last fall,
when the group held its first protest there, Pfiester said, it was “the first
time where people living with Type 1 were able to physically stand and show
that people are angry enough to come out.”
Eli
Lilly declined a request for an interview, but in statement a spokesperson
said, “We understand why people are making their voices heard.”
Protesting
is one arm of their advocacy efforts; the group is also lobbying at the state
and national level, and conducting online awareness-raising campaigns under the
hashtag #Insulin4All.
Advocacy
At The State Level
Last spring,
the fight got even more personal for Angela Lautner. She got a letter from her
insurance company saying they were no longer going to pay for the insulin she
was taking. They wanted to switch her to a different brand.
Most
people with Type 1 diabetes use two types of insulin: short-acting insulin to
counteract the carbohydrates consumed with meals, and long-acting insulin to
keep blood sugar stable throughout the day.
Lautner
has found that the long-lasting insulin brand Lantus works best with her body;
it keeps her blood sugars low, but not so low that she becomes dangerously
hypoglycemic, risking death. But her insurer was dropping its coverage of
Lantus in favor of a different long-lasting insulin, Basaglar.
“The
problem that I immediately saw was that [Basaglar] had not worked for my body,”
Lautner said. “So I go into my doctor’s office with this letter and I’m like,
‘What am I going to do?'”
Lautner’s
doctor connected her to Sanofi’s drug discount program, where she was able to
get a month’s supply of Lantus for a couple of hundred dollars. So she decided
to pay for the insulin herself.
“I’m
fortunate enough to have an emergency fund,” Lautner said.
But she
knows others aren’t so lucky.
This
year, Lautner organized her own group of diabetes activists in Kentucky, Ohio
and Indiana, called KOI Insulin4All. They’ve
met with legislators in all three states about establishing emergency insulin
prescription refills and about making the cost of insulin more transparent.
There
are similar groups starting up in Oklahoma, Pennsylvania, Minnesota and
Illinois. In November, activists protested outside the
Cambridge, Mass., office of Sanofi. All of them are pushing for the same thing
— to make the voices of people with diabetes heard.
This story is part of a reporting partnership with NPR.
Bram
Sable-Smith: @besables
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