[Ip-health] Specialty drugs transform lives — but at a cost

Claire Cassedy ccassedy2 at gmail.com
Wed Jul 23 06:20:57 PDT 2014


Specialty drugs transform lives — but at a cost

Expensive new specialty drugs offer hope to patients with rare and chronic
illnesses but also leave many worrying about paying for them

By Felice J. Freyer  | GLOBE STAFF   JULY 21, 2014

Every year, Cora Higson fills out a sheaf of forms and waits several long,
anxious days to learn whether a charity will pay for the drug she needs to

The medication — Tracleer — is so essential, Higson says, that she is
supposed to call her doctor immediately if she misses a dose. But her share
of the cost is a whopping $1,111.47 per month .

Tracleer is the brand name for bosentan, a drug that lowers blood pressure
in the lungs, easing the pulmonary hypertension that otherwise would leave
her gasping for air.

So far, Higson hasn’t forgotten a pill, nor has she been turned down by the
charity, Caring Voice Coalition of Mechanicsville, Va., which provides a
grant to cover her share of the drug’s cost. But each time she fears that
she won’t qualify for help.

Higson, 56, a former hairdresser, has health insurance through her husband,
Bob, an air-conditioning technician, but his union-based plan requires a 30
percent copay on certain drugs.

“I wouldn’t mind paying. I mean, it’s not like we’re destitute,” Higson
said. “But I can’t afford $1,100 a month. . . . If I didn’t have this
medicine I’d probably be on oxygen all the time.” (An alternative drug she
tried had severe side effects, and the other options aren’t any less
expensive, she says.)

Born with a hole in her heart, Higson had open-heart surgery at age 7, but
her heart didn’t trouble her again until her 40s, when heart failure and
pulmonary hypertension struck. She now receives disability payments.

Throughout Massachusetts, people like Higson worry they might no longer be
able to afford an essential medication as prices rise and insurance
policies change, and some are even skipping or splitting pills, patient
advocates say.

A quarter of the 40,000 Massachusetts residents who sought help last year
from the National Patient Advocate Foundation said their biggest problem
was affording the out-of-pocket cost of pharmaceuticals, said Larry Lanier,
who leads state outreach and community advocacy for the foundation.

This is happening even though — on average — patients nationwide pay less
than $10 out of pocket for their prescription medications, 86 percent of
which are generics, according to the IMS Institute for Healthcare
Informatics. Higson, for example, has no trouble paying for her five other
medications, all generics that together cost her less than $20 a month.

Higson’s outsize copay for Tracleer exemplifies a widening gap between the
lower-cost generics that most people use and new “specialty” drugs with
eye-popping price tags. For example, Sovaldi, a new treatment for hepatitis
C, cures the vast majority of patients, but at a price of $84,000 per
person for the full course of treatment.

Specialty drugs are medications that work by complex mechanisms and often
require special handling or monitoring. They cost a lot but can transform
or save lives, treating such illnesses as cancer, rheumatoid arthritis,
multiple sclerosis, HIV/AIDS, and other chronic conditions. Nineteen of the
28 drugs approved by the FDA last year were specialty drugs, including 10
new cancer treatments and 17 drugs for rare illnesses. And many more are in
the pipeline.

Fewer than 4 percent of patients use specialty drugs, but they account for
25 percent of total drug spending in the United States; and the growth of
specialty drugs is a key factor driving up health care spending, according
to PricewaterhouseCoopers.

Faced with these soaring costs, and trying to control premium increases,
insurance companies and employers have started shifting the burden to the
minority of patients who need the costly drugs. Some plans group all
specialty drugs into a separate “tier,” requiring patients to pay 20 to 50
percent of the cost, rather than the flat dollar amount required for other

“The impact of the specialty tier benefit design falls disproportionately
on patients who are living with diseases and conditions that are serious
and life-threatening,” said Marialanna Lee, Northeast Region state
government affairs director for the Leukemia & Lymphoma Society. Often the
specialty drug is the only one available for these conditions, she said.

“It’s going to cost more in the long run,” predicts Patricia Ferland
Weltin, executive director and founder of the Rare Disease United
Foundation. If denied drugs that keep them well, she says, “They’re going
to end up in the E.R, they’re going to end up sick, costing more money than
if they took the drug. . . .

“It just breaks my heart to see. We’re finally making headway with
treatments, and the insurance companies’ lack of foresight is going to
change that.”

In Massachusetts, the health insurers say they have not segregated
specialty drugs into separate tiers. “It’s not a strategy overall that Blue
Cross has adopted,” says Dr. Tony Dodek, vice president of medical quality
and strategy for Blue Cross Blue Shield of Massachusetts. “Our first
priority is to make sure that our members have access to these drugs.”

But some plans do require percentage copays, including several sold on the
Massachusetts Health Connector. Additionally, Medicare Part D drug coverage
does allow specialty tiers. And others may see specialty tiers if their
employer is self-insured — that is, the employer designs the benefit and
assumes the risk, hiring the insurance company merely to process claims.
(Cora Higson’s coverage, through her husband’s union, is one such plan.)

Six states have adopted legislation that in one way or another puts a cap
on consumers’ costs for specialty drugs. A bill in Congress also would
limit specialty tiers.

The Massachusetts Legislature is considering a bill, modeled after a law in
Vermont, that would cap out-of-pocket costs for prescription medications at
$1,250 a year for an individual and $2,500 for a family. The cap would
apply to all plans sold on the Massachusetts Health Connector as well as to
commercial plans that people obtain through their employers. But people
whose employers are self-insured — about half the commercially insured
population — would not be affected, because such plans are exempt from
state insurance rules.

Eric Linzer, senior vice president of public affairs and operations for the
Massachusetts Association of Health Plans, says that capping out-of-pocket
drug costs will only raise premiums and force insurers to remove some
low-premium plans from the market, without addressing what he calls the
source of the problem: drug prices. “We need to take a good hard look at
what pharmaceutical companies are charging for prescription drugs,” he says.

The bill’s sponsor, Senator Anthony W. Petruccelli (D-East Boston), says
the bill has been well-received, winning approval in two key Senate
committees. But there may not be enough time to move it out of the Senate
and through the House before the July 31 end of the legislative session.

That will mean another year of worry for people like Diane Lima of
Acushnet, whose 14-year-old son depends on a hemophilia treatment that
costs $25,000 to $30,000 a month. Years ago the boy needed a wheelchair
from time to time because of frequent bleeds into his muscles and joints.
Now, thanks to injections every other day, her son can play sports at his
high school, where hardly anyone even knows he has hemophilia.

Lima works for a hospital group whose health insurance policy covers her
son’s care. But she knows that she’s expensive to insure and worries every
year that her employer will switch to a less generous plan.

“We have been super-fortunate,” Lima says. “But you don’t know what’s going
to happen tomorrow.”

Felice J. Freyer can be reached at felice.freyer at globe.com. Follow her on
Twitter @felicejfreyer.

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