PI Action alerts & updates ... 2004
Project Inform Advocacy Update
October 2004
In this Issue
Securing the Legacy of Ryan White
HIV Community Responds to Medicare Regulations With
Unified Voice
President’s “Emergency” ADAP Funds
– 4 Months Later
Congress Leaves Town Before Passing Spending Bill
Keeping Prescription Drug Costs In Check
Fighting Medicaid Cuts, A State-Based Initiative
California’s Medi-Cal Redesign
Sculptra Pricing
Spread the Word!
Events
Check This Out
Quote of the Month
Securing the Legacy of Ryan White
Project Inform supports the Institute of Medicine’s
report: “Public
Financing and Delivery of HIV/AIDS Care: Securing the Legacy of
Ryan White.” The report recommends creating a new federal
entitlement that would provide comprehensive medical, mental health
and substance abuse services, medications and case management for
low income Americans living with HIV/AIDS. Click
here for a summary and background report.
In a climate where Medicaid is facing threats at the federal and
state levels and Ryan White CARE Act funding has been almost level-funded
despite great increase in need, a federal guarantee of essential
services is the only way to ensure a comprehensive and accessible
standard of care throughout the country. The new program would guarantee
a consistent level of service across the nation, while the CARE
Act would continue to address service and eligibility gaps.
Project Inform and nearly 30 AIDS organizations signed on to a
letter
in support of these recommendations. Although a Kaiser
Network article reports that under the current administration
the program may not be politically viable, we will continue to advocate
for it as a cost-effective, comprehensive program providing life-saving
treatment and care.
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HIV/AIDS Community Responds
to Medicare Regulations with Unified Voice
People with HIV and their advocates responded overwhelmingly during
the public comment period on the Medicare prescription drug benefit
regulations draft. Over 500 letters and emails were collected by
the HIV Medicaid/Medicare Work Group that focused on the needs of
people with HIV/AIDS who will depend on this benefit when offered
in 2006.
The Work Group also submitted a comprehensive letter, signed by
numerous organizations, detailing our recommendations. Look in future
updates for more information as final regulations are created.
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President’s “Emergency”
ADAP Funds – 4 Months Later
President Bush announced in June that he would provide $20 million
to assist those on waiting lists for the AIDS Drug Assistance Program
(ADAP) in ten states. This program has now been finalized and is
in the process of being implemented, although to date, no one has
received medications. In addition, four states (AR, UT, NE and WY)
have reported waiting lists for their ADAPs, but are not eligible
for this assistance.
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Congress Leaves Town Without Passing Spending
Bill
Congress adjourned until after the November election without approving
a final Labor-Health and Human Services appropriations bill for
fiscal year 2005. This bill funds HIV/AIDS care, treatment, research,
and prevention programs. Both the House and the Senate passed their
versions of the bill, but a joint House/Senate conference committee
needs to work out the differences and negotiate a final version.
Congress is expected to pass a final bill in November after the
election. Advocates will push for the increase for ADAP in the House
version ($55 million increase compared to $35 million in the Senate
version)—far short of what is needed to alleviate the ADAP
crisis. The rest of the Ryan White CARE Act, which funds vital healthcare
and support services, received only flat funding. Continued underfunding
of these services is causing cuts to programs around the country.
Regardless of the outcome of the November election, a major advocacy
campaign will be crucial to secure the money needed for these lifesaving
programs.
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Keeping Prescription Drug Costs In Check
Project Inform is a founding member of the Fair Pricing Coalition
(FPC), a coalition of community-based advocates focused on drug
pricing issues. The FPC works with the pharmaceutical industry to
contain the prices of new products within the price range established
by existing drugs in the same class. The intent is to keep new products
within a price range that will allow new combinations to approach
cost neutrality with older combination therapies.
The FPC has also worked with companies on the price of existing
drugs and was successful in 2002 in enacting a two-year price freeze
agreement with companies in the HIV market. The agreement is complete
and most companies, with the notable exception of Pfizer, took price
increase on most or all of their anti-HIV drugs in 2004.
The AIDS Treatment Advocacy Coalition (ATAC) Drug Development Committee
(DDC) has also been working with companies to increase community
pressure for an extension of the agreement.
You can view some recent communications with pharmaceutical companies
about this issue from the FPC here.
A sign-on letter from ATAC can be viewed at www.atac-usa.org.
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Fighting Medicaid Cuts, A State-Based Initiative
As states face deficits and healthcare costs escalate, many are
turning to their Medicaid programs for ways to cut costs. In 2004,
49 states reported they were considering funding cuts or cost containment
measures to their programs. Recently, Mississippi cut 65,000 people,
including several thousand with HIV/AIDS, off its Medicaid program.
The Treatment Access Expansion Project is a national coalition
of community and industry advocates that advocates for early access
to care and treatment for people with HIV/AIDS. As a steering committee
member of TAEP, Project Inform endorses its initiative to facilitate
advocacy efforts focused on protecting state Medicaid programs.
This project includes trainings for advocates in several states.
It will be essential that state advocates and people with HIV understand
their state Medicaid program and defend against harmful cuts or
changes. For more information, check the Medicaid section of the
TAEP
website.
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California Medi-Cal Redesign
Earlier this year, California Governor Arnold Schwarzenegger announced
his intent to redesign the state’s Medicaid program (Medi-Cal)
with an eye towards streamlining the program and cutting costs.
The administration indicated its interest in pursuing a 1115 waiver
for the entire Medi-Cal program which would cap federal funding
for the program and allow the state “flexibility” from
federal rules to make radical benefit and cost savings changes.
Advocates, including Project Inform, participated in the stakeholder
process organized by the state. Many expressed serious concerns
with proposed concepts and provided options for the state to consider.
The results of this process as well as other important information
about Medi-Cal can be found at www.medi-calredesign.org.
The state responded by slowing the redesign process to consider
community and provider concerns and has stated that it will provide
details of the proposal to the Legislature as part of the Governor’s
FY 2005–2006 budget proposal to be released in January 2005.
Meanwhile, advocates are submitting a letter outlining concerns
specific to people with HIV/AIDS covered under Medi-Cal. You can
read this letter here.
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Sculptra Pricing
In August 2004, the FDA approved Sculptra (formerly known as NewFill)
for the restoration and/or correction of the signs of facial fat
loss due to HIV-related lipoatrophy. In studies reported to the
FDA, the majority of people did not require further treatment for
at least 18 months. Serious side effects are very rare, but properly
administering Sculptra requires significant training and experience.
Beyond the effects of treatment, however, accessing Sculptra may
be a real issue for many people with facial wasting. Neither insurance
companies nor government health programs will typically cover the
cost of any cosmetic procedure, regardless of the impact a condition
may have on a person’s quality of life. Therefore, the only
way for most people to access treatment is out-of-pocket payment.
Project Inform, along with other community activists, are working
to increase access to Sculptra through a company patient assistance
program, and possible inclusion on public and private insurance
formularies. Go here
for more information about this treatment and efforts to increase
access.
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Spread the Word!
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Events:
Project Inform Calendar.
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Check This Out:
AIDSvote.org now
has links for absentee ballot and voter registration (including
change of address) info. Click
here for GMHC’s report on both presidential candidates’
healthcare proposals and their impact on people living with HIV/AIDS.
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Quote of the Month
“Bad officials are elected by good citizens who do not vote."
– George Jean Nathan
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