PI Action alerts & updates ... 2006
PI ACTION UPDATE
March 9, 2006
In this issue
President Continues Attack on Health
Care
HIV/AIDS Care and Treatment Still Underfunded
Part D Implementation Off to a Rocky Start
New Guidelines for Part D Formularies
CMS Gives More Time to Fill Prescriptions
California Extends Emergency Coverage for Duals
What's Happening with Ryan White Reauthorization?
California Advocates Release Budget Request
Treatment Advocacy Update
Changes ... and a Retooled Health Care Advocacy Webpage
A Quote We Like
President Continues Attack on Health Care
Just days after Congress passed the "Deficit Reduction Act"
with major cuts to public health care programs, President Bush released
his proposed budget for Fiscal Year 2007 and continued the attack
on the nation's most vulnerable people. Read Project Inform's response
to the budget proposal here.
In addition to calling for an overall cut to the Department of
Health and Human Services, which funds health and social service
programs nationwide, the President's budget includes $13.7 billion
in new cuts to Medicaid. This is on top of the $4.8 billion cut
in the 2006 budget. Last year's budget also included new power given
to states to increase co-pays and other cost-sharing to their Medicaid
recipients, and refuse services if beneficiaries can't pay. With
the passage of the Deficit Reduction Act, the battle to maintain
Medicaid programs has moved to the state level. State advocates
will have to work hard to ensure that their Medicaids don't enact
these harmful cost cutting measures.
While many of the cuts in the new budget are considered "administrative",
the reality is that states can't absorb any more hits in their Medicaid
funding. The likely result is that these cuts will be passed to
the Medicaid recipient in the form of increased cost burdens.
The non-partisan Congressional Budget Office has analyzed the Deficit
Reduction Act and found that 80% of the savings in Medicaid will
come from denying care and treatment to those who can't pay higher
co-pays and premiums. The new cuts proposed by the President will
only make this situation worse. We need to tell our elected representatives
"enough is enough" and stand firm against any more cuts
to this lifesaving health program.
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HIV/AIDS Care and Treatment Still Underfunded
During his State of the Union address in February, President
Bush stated that "A hopeful society acts boldly to fight diseases
like HIV/AIDS, which can be prevented, and treated, and defeated."
His proposed budget for domestic HIV/AIDS care and treatment programs,
however, fell far short of matching those strong words. Once again,
the President has called for flat funding for all of the Ryan White
CARE Act, with a couple of exceptions. This will make it even harder
for people with HIV around the country to get vital primary care
and support services.
The President called for a $70 million increase to help states
with ADAP waiting lists. While this funding is badly needed, it
falls short of the $197 million increase identified by treatment
experts as the amount that will help states provide a basic level
of service to everyone who needs it. It also means that states without
waiting lists, many of which are still in severe need, won't receive
any extra money, potentially creating more problems with their ADAPs.
The budget also asks for $25 million for outreach efforts by faith
and community-based organizations to reach underserved populations.
While the money is proposed to go through the CARE Act, details
are still unknown. Although outreach is clearly important, outreach
without sustaining necessary health care and support services is
wasted money and bad public health.
In addition to continuing our calls, letters, and meetings with
elected representatives to fight for adequate HIV/AIDS and health
care money, with mid-term elections coming up in November, we have
a great opportunity to make sure we are electing Members of Congress
who commit to making health care a priority. In the next few months,
look for ways you can get involved in talking to candidates about
issues important to us and in helping others register to vote and
getting to the polls.
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Part D Implementation Off to a Rocky Start
Medicare's new prescription drug benefit, Medicare Part
D, started on January 1, 2006. Among the first to enter the benefit
were the approximately 7.4 million beneficiaries who qualify for
Medicare and Medicaid (known as dual eligibles). These include the
70 to 85 percent of Medicare beneficiaries living with AIDS. The
dual eligibles lost their Medicaid prescription drug coverage on
December 31, 2005 and should have been automatically enrolled in
a Medicare Part D plan on January 1,2006.
Dual eligibles are among the sickest and lowest income of all Medicare
beneficiaries. Over half are in fair or poor health and they are
more likely to have mental health concerns and to live in nursing
homes. This very vulnerable population was the wrong place to start
with the launch of a new and untested benefit system. Advocates
have been warning elected officials, the administration and the
Centers for Medicaid and Medicare Services (CMS) that this population
would likely have a very difficult time under the new benefit, especially
because it is delivered by private companies with little to no experience
with a high-need population.
Unfortunately, this group was among the first to be forced into
the benefit. Implementation was plagued with problems, including
impossible wait times for help, inaccurate information on beneficiaries
plans and benefits, and customer representatives who had incorrect
information. The result was hundreds of thousands dual eligibles
without access to the drugs they needed. Project Inform has prepared
an article with detailed information on implementation, and some
tips for those can't access their medication.
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New Guidelines for Part D Formularies
The HIV Medicaid and Medicare Work Group recently sent
comments to the Centers for Medicaid and Medicare Services (CMS)
on the proposed guidelines for Medicare Part D formularies. While
we are pleased that CMS is continuing to "protect" six
important categories of drugs, including anti-retrovirals, we are
concerned that there are no requirements to add newly approved drugs
to formularies upon FDA approval after April, 2006. Drugs approved
after April will go through a standard plan approval process which
could take up to six months.
Medicare beneficiaries living with AIDS are particularly vulnerable
to delays for new drugs as they are a more treatment-experienced
population who have often exhausted existing options and need access
to newer options.
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CMS Gives More Time to Fill Prescriptions
All Medicare Part D plans were supposed to allow new beneficiaries
a "transition" period for prescription fill. If a beneficiary
was on treatment when he or she entered a new plan, all drugs were
supposed to be covered for 30 days regardless of whether they were
on the plan formulary. Unfortunately, plans were not honoring the
transition fills and - perhaps even more problematic - beneficiaries,
providers and pharmacists were mostly unaware of transition rights
or how to invoke them.
The Centers for Medicaid and Medicare Services has recognized the
situation and belatedly issued a memo that calls for a "one-time
across the board extension of the transition period to March 31
for those individuals who were enrolled in the first few months
of the program." For individuals who enroll on March 1 or thereafter,
the thirty day transition policy remains in place. Part D plans
were required to respond to CMS by February 6 as to whether they
would implement the policy.
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California Extends Emergency Coverage
for Duals
California's state-funded emergency drug coverage for dual
eligibles was extended by Governor Schwarzenegger until March 16th,
2006. The Governor has the discretion under recently passed legislation
to extend the coverage for thirty day increments, not beyond May
16th, 2006..
Medi-Cal (California's Medicaid) will provide drug coverage for
a dual eligible when: (1) the Part D plan has denied payment for
reasons other than pharmacy error, lack of medical necessity, or
health and safety reasons; (2) the pharmacy can't submit a claim
because Part D information is inadequate; (3) the Part D plan requires
a deductible or a co-pay higher than what should be charged to a
dual eligible beneficiary -- between $1 and $5 under the low-income
subsidy or extra help.
For complete detailed information on how to submit claims, go to
Medi-Cal's website.
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What's Happening with Ryan White Reauthorization?
The Ryan White CARE Act, which funds care, treatment, and
support services to people with HIV/AIDS nationwide, expired on
September 30, 2005, and needs to be reauthorized. It continues to
be funded, however. Advocates have created a fact sheet with basic
information about reauthorization and the process to date.
Staff of the House and Senate committees that oversee the CARE
Act are meeting regularly in a bipartisan process to draft a reauthorization
bill. Last week, Senator Tom Coburn (R-OK) released his own bill.
Project Inform has been working with many coalition partners to
reauthorize the CARE Act, including Communities Advocating Emergency
AIDS Relief (CAEAR) Coalition, and the Federal AIDS Policy Partnership
(FAPP) Ryan White Reauthorization Group.
We are also advocating, along with colleagues who participated
in a "Ryan White Unity Summit" last November, for a mechanism
in the reauthorized bill that would provide supplemental Title II
funding to states without Title I EMAs, or whose AIDS caseloads
are outside of urban areas. We have released a statement for organizations
and individuals to sign in support of this proposal.
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California Advocates Release Budget Request
The California Alliance of HIV Advocates, which includes
Project Inform, has released its Fiscal Year 2006-2007 state budget
request. It thanks the Governor and Legislature for fully funding
the state's ADAP, and requests a transfer of funds from ADAP to
the CARE - Health Insurance Premium Program (CARE-HIPP) to pay for
premiums associated with the new Medicare prescription drug benefit.
It also proposes an expansion of the CARE-HIPP to better serve people
with HIV/AIDS in California.
The Alliance is asking for funding for treatment and prevention
programs to address the use of methamphetamine among gay men and
men who have sex with men, particularly those who are also HIV positive,
and an extension of a one time increase of HIV prevention funding
approved in last year's budget.
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Treatment Advocacy Update
Recent events in treatment advocacy at Project Inform include
work with two key pharmaceutical companies and an exciting collaboration
with the Elizabeth Taylor AIDS Foundation to bring HIV medical care
to people in the hurricane ravaged area around New Orleans.
We've worked collaboratively and privately with Tibotec, a new
company soon to get approval of its first product for HIV, and with
Merck, one of the pioneers of protease inhibitors.
Merck is about to pioneer another new field of drugs for HIV called
integrase inhibitors. Tibotec is in the final stages of testing
the new protease inhibitor TMC114, also known as Darunavir. We have
worked with other groups to make sure people in need have wide access
to the drug without waiting for final approval.
Most importantly, the community has worked with the companies to
make it possible for people in studies and in expanded access programs
to get two new drugs at the same time, greatly increasing chances
of success. Tibotec and Merck will also make sure that each company's
new drug could be used along with the other company's. Project Inform
has begun working with both companies to try to restrain the prices
that will be charged for these drugs.
Beginning last October, Project Inform began a collaboration with
the Elizabeth Taylor AIDS Foundation (ETAF) to help people with
HIV in the New Orleans area, where nearly all the HIV clinics had
been closed by the flooding. With the financial backing of ETAF,
Project Inform consulted with the New Orleans AIDS Task Force to
define the local need. This led to the construction of a mobile
medical unit (the equivalent of two medical offices) that will be
utilized throughout New Orleans and the surrounding area, bringing
HIV treatment and care to those in need.
The unit, called the CARE VAN, was finished in mid February, and
is currently in use. It will be shared by the Task Force, the State
Department of Public Health and the Department of Public Health
of the City of New Orleans. It was a rare honor and privilege to
work with ETAF and with Elizabeth Taylor, a pioneer in both philanthropy
and AIDS activism since the earliest days.
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Changes ... and a Retooled Health Care
Advocacy Webpage
Project Inform has recently renamed its public policy department
to better reflect its mission. Our Health Care Advocacy program
works to protect and expand access to quality health care and treatment
for people with HIV/AIDS, with a focus on vulnerable populations.
To learn more about our priority issues, check out our new Health
Care Advocacy webpage.
We've also retired the name of our grassroots network after a 15
year run. The Treatment Action Network (TAN) is now called PI Action.
This network of people across the country continues to make a difference
by urging their elected representatives to commit to a true fight
against HIV/AIDS and to protect the health care of those in need.
Please ask your friends and family to join in this effort and to
receive our information updates by signing up for PI Action!
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A Quote We Like
"It is scandalous to provide insufficient funding
for our Nation's two greatest capital investments: health and education."
Senator Arlen Specter (R-PA), February 6, 2006,
responding to the President's budget proposal
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