In 2006, Karen Bates, who qualifies for both Medicare and Medicaid, will get her HIV meds through a new, "modernized" plan--or will she?
Karen Bates, 51 and HIV
positive, was a paralegal in Columbia, South Carolina, until a stroke
felled her in 1998. Unable to work and struggling daily with dizziness
and memory problems, Bates is fortunate in one way: She belongs to a
well-insured class of 7 million American “dual-eligibles,” people who
receive Medicare, due to age or long-term disability, plus,
Medicaid, due to low income. Medicare gives Bates access to doctors and
hospitals—and Medicaid pays for the HIV meds and other drugs she needs
to stay alive. But in late 2003, Congress passed the Medicare
Modernization Act—only one in a series of moves by the Bush
administration to “streamline” health-care coverage. The act’s
centerpiece is a new prescription-drug plan, effective January 2006. It
requires seniors and chronically disabled folks (like some HIVers) to
get their meds not from a central state source, as Medicaid provides,
but from a range of private drug-plan options. “It’s dizzying,” Bates
says. “My house is inundated with paper. You don’t even know where to
Beyond its complexity, the “modernization” plan (Bates calls
the name “doublespeak”) is most controversial for barring the government
from negotiating with drug companies for the lowest possible med
prices. Big pharma lobbied hard for this provision, raising the
question of who benefits from the new system. Indeed, it’s not
clear that those plans will cover all the meds HIVers need. “What
happens January 1, 2006?” Bates asks, her voice quavering. “All the
rules change.” She and 60,000-odd dual-eligible HIVers face a future
full of questions.
Dual-eligible PWAs are often “the poorest and
the sickest” of HIVers, according to HIV-benefits advocate Lei Chou. He
understands Bates’ fears: The program calls for private drug plans to
cover at least two options per HIV drug class—but not every med in all
four classes. It’s hard enough for PWAs, many with resistant HIV, to
find a combo that can control their virus—and that they can live with.
Finding one based on a limited med list may be impossible. What if, for
example, you need the soon-to-be-approved protease inhibitor (PI)
tipranavir because of resistance to other PIs—but your plan covers only
Kaletra and Reyataz? “People with AIDS have to be able to move to
another drug immediately,” says the AIDS Institute’s Carl Schmid, who
unsuccessfully lobbied with other AIDS advocates for the Medicare plan
to guarantee coverage of all HIV meds. “We don’t know if the plan they
get on [in the new Medicare program] is going to have that drug.” This
doesn’t mean Bates won’t
get all her meds, including Truvada and Viramune as well as Neurontin,
Valtrex and meds for GI problems and allergies—but she will likely have
to jump through hoops to do so. As Chou says, “there’s nothing concrete
right now.” (But that doesn’t mean there’s nothing you can do—see
“Preparing for the Unknown,” right.)
Peter Ashkenaz, a rep for
the Centers for Medicare and Medicaid Services (CMS), the federal
agency implementing the new Medicare drug program, delivers a mixed
message. “All of these [HIV meds] have to be on the formulary” of any
drug plan included in the program, he insists. But moments later he
adds, “My guess is you’re going to find that one plan offers [a certain
drug] and the other does not,” noting that plans will have to “provide
strong justification” for withholding key meds. HIVers denied a needed
drug will likely be entitled to a fast-track appeals process, he says.
CMS has promised that if your doctor deems a drug medically necessary,
the plan must provide it.
Your best bet? Choose a drug plan
carefully, zooming in on those that offer the widest array of HIV meds
you might need now or for your next regimen. CMS says it will
automatically enroll all 6.3 million dual-eligibles by fall 2005, so
keep an eye on your summer mail. Once you get that notice, you will
need to review your automatically selected plan, compare it to other
available plans, decide which one you want and switch if necessary.
(Dual-eligibles can change plans anytime if needed, but that means more
paperwork.) But participating drug plans, which are signing on to the
program in dribs and drabs, aren’t required to post their formularies,
or drug menus, until mid-October, leaving only 10 weeks for decision
making. When the plans are posted, says Ashkenaz, you can compare the
drug formularies by calling 800.633.4227 or visiting www.medicare.gov.
is preparing by talking to her doctor now, reviewing which drugs she
might need in the future and then trawling for plans that include those
meds (this gives “sequencing” a new meaning!). And once the enrollment
notice arrives and the formularies become public, she says she’ll
consult her pharmacist to help her choose the best plan.
weathers what she terms “all this immune-damaging stress,” Bates at
least has her dog Missy to comfort her on days when she’s not even
feeling up to making her support group. “She was a rescued child,” says
Bates of the mutt. “I adopted her when she needed a home.” Bates hopes
she can make the new Medicare drug plan rescue her.
PREPARING FOR THE UNKNOWN
Dual-eligible HIVers anxious about Medicare’s new drug plan can…
information on the Medicare act at www.cms.hhs.gov/ medicarereform. Or
call the Center for Medicaid and Medicare Services toll-free at
877.267.2323 (TTY: 866.226.1819).
CONNECT with help. Lei Chou
recommends a sit-down with a case manager at your local AIDS service
organization; Karen Bates says turn to your doc and pharmacist.
DIG deeper. For detailed coverage, click on “Advocacy,” then “Medicare” at www.hivma.org.
NOT DUAL-ELIGIBLE? THE MEDICARE MODERNIZATION ACT AFFECTS YOU, TOO:
About 30,000 HIVers on Medicare alone will now get their meds through
the program. This may remove some pressure from overtaxed AIDS Drug
Assistance Programs (ADAPs), says the AIDS Institute’s Carl Schmid.
Unlike dual-eligibles, who pay no premium and whose copays will not
exceed $3 per prescription, in 2006 regular Medicare drug-plan users
will shell out an average $35 monthly premium and a $250 deductible,
then pay into a complicated cost-sharing system that could push the
annual out-of-pocket beyond $3,600 for HIVers with costly drug regimens.
For a relatively simple plan explanation, click on “Fact Sheet” at www.kff.org/medicare/7044.cfm.