Transcript AIDS Drug Assistance Programs: Utilization, Program Restrictions

AIDS Drug Assistance Programs:
Utilization, Program Restrictions and
Waiting Lists
Ryan Clary & Michael Friedman, Project Inform
Ann Lefert, National Alliance of State and
Territorial AIDS Directors
Overview of Presentation
• Key ADAP terms
• Understanding ADAP statistics – how do they
help tell the story?
• Current ADAP situation
• ADAP “asks”
• History of ADAP activism
• Current advocacy opportunities
• Small-group messaging work
What are ADAPs?
All states receive Ryan White funds to provide
FDA approved medications to low income
individuals with HIV disease who have limited
or no coverage to private insurance or
Medicaid/Medicare. ADAPs may purchase
insurance and wrap-around all other payers.
Key ADAP Terms
• Eligibility Criteria – ADAPs are allowed to set
their own Federal Poverty Level (FPL) as their
eligibility criteria. Current eligibility criteria range
from 200% to 500% FPL. The bulk of ADAP clients
have incomes at or below 200% FPL.
• Formulary – ADAP drug list that establishes the
number of drugs available to ADAP clients. Each
state sets their own formulary, but must have at
least 1 drug from each therapeutic class.
Key ADAP Terms
• Cost-containment measure – blanket term used to
describe access restrictions in an ADAP. Common costcontainment measures are:
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Lowered financial eligiblity levels
Reduced formulary (taking drugs off the formulary)
Capped enrollment – no new clients can enter the program
ADAP waiting lists – clients have been placed on a waiting
list to receive drugs through ADAP
– Expenditure caps – a limit on monthly or annual spending
on drugs per client
– Client cost-sharing – a requirement that clients contribute
a portion of their drug costs. In states that have this
currently – it is only targeting the highest-income clients
Key ADAP Terms
• Coordination of Benefits – activities
undertaken to ensure that the appropriate
costs are paid for by the responsible payer
when multiple payers exist.
• Payer of Last Resort – by law, Ryan White
programs are the payer of last resort. They
can only pay for services if no other payers are
available
Key ADAP Terms
• Patient Assistance Programs – a program
generally run through a pharmaceutical
manufacturer to provide free or greatly
subsidized medications to indigent patients.
ADAP Statistics
• Sources for ADAP Statistics:
– NASTAD ADAP Watch: www.nastad.org
– NASTAD Annual ADAP Monitoring Report:
– HIV/AIDS Bureau, Health Resources and Services
Administration: www.hab.hrsa.gov
– Specific State websites – database of state
information can be found on NASTAD’s site:
http://www.nastad.org/About/res_state_Director
y.aspx
ADAP Statistics
• ADAP Watch
– Provides information on current cost-containment
measures
– ADAP Waiting Lists garner lots of attention, but
any cost-containment measure has chilling affect
on programs
• National ADAP Monitoring Report
– Provides in-depth information on all 57 ADAPs
including: funding, client demographics, client
utilization, expenditure data, etc.
ADAP Statistics
• Client Demographics
– Race/ethnicity
– Age
– Gender
– Income Levels
– Insurance Status
ADAP Clients Served, by
Race/Ethnicity, June 2008
American Indian/Alaskan
Native
<1%
Native Hawaiian/Pacific
Islander
<1%
Multi-Racial
1%
Other
<1%
Unknown
2%
Asian
1%
Non-Hispanic Black/African
American
33%
Hispanic
26%
Non-Hispanic White
35%
ADAP Clients Served, by Gender,
June 2008
Transgender
<1%
Unknown
<1%
Female
23%
Male
77%
ADAP Clients Served, by Age,
June 2008
Age Unknown
<1%
>64 Years
2%
<12 Years
<1%
13-24 Years
3%
45-64 Years
45%
25-44 Years
50%
ADAP Clients Served, by Income Level,
June 2008
Federal Poverty Level
Unknown
3%
>400% FPL
2%
301-400% FPL
6%
201-300% FPL
15%
101-200% FPL
31%
≤100% FPL
42%
0%
5%
10%
15%
20%
Percent of Clients
25%
30%
35%
40%
45%
ADAP Clients Served, by Insurance Status,
June 2008
Medicaid
11%
Medicare
13%
Dually Eligible (Medicaid & Medicare)
Payer
2%
Private Insurance
17%
Uninsured
72%
0%
10%
20%
30%
40%
Percent of Clients
50%
60%
70%
80%
ADAP Statistics
• The total ADAP budget in a state can be made
up of many different components:
– Federal ADAP earmark
– ADAP supplemental funding (if eligible)
– State general revenue
– Part B base funding
– Contributions from Part A grantees
– Drug rebates
Part B ADAP Earmark
FY2000 – FY2010
$900
$800
$787.3
$789.3
$789.6
$794.4
2005
2006
2007
2008
$815.0
$835.0
$748.9
$714.3
Number of Dollars
$700
$619.8
$571.3
$600
$527.6
$500
$400
$300
$200
$100
$0
2000
2001
2002
2003
2004
2009
2010
The National ADAP Budget, by Source, FY2003 and FY2008
FY2003
Part A Contribution
(2%)
FY2008
Part A Contribution
(1%)
ADAP Supplemental
(2%)
Part B Contribution
(2%)
Part B Contribution
(2%)
ADAP Supplemental
(3%)
Other Funding
(1%)
Drug Rebates
(11%)
Drug Rebates
(21%)
State Contribution
(17%)
ADAP Earmark
(51%)
ADAP Earmark
(67%)
State Contribution
(21%)
Current ADAP Situation
• ADAPs are currently in crisis
• 15 states have implemented or are
anticipating having to implement costcontainment measures other than waiting lists
• 10 states have ADAP waiting lists
ADAP Waiting Lists and Cost-Containment,
as of April 15, 2010
Current ADAP Situation
• ADAP Waiting Lists, as of April 15, 2010
• Total of 938 individuals in 10 states
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Idaho: 26 individuals
Iowa: 69 individuals
Kentucky: 191 individuals
Montana: 17 individuals
North Carolina: 400 individuals
South Carolina: 48 individuals
South Dakota: 32 individuals
Tennessee: 61 individuals
Utah: 80 individuals
Wyoming: 14 individuals
Current ADAP Situation
• ADAPs with other cost-containment measures since April 1, 2009
– Arizona: reduced formulary
– Arkansas: reduced formulary, lowered FPL to 200%
– Colorado: reduced formulary
– Hawaii: individuals with CD4>350 not currently on ARV therapy
are not being enrolled (not pregnant women)
– Iowa: reduced formulary
– Kentucky: reduced formulary
– Missouri: reduced formulary
– North Carolina: reduced formulary
– North Dakota: cap on Fuzeon
– Utah: reduced formulary, lowered FPL to 250%
– Washington: client cost sharing, reduced formulary (for
uninsured clients only)
Current ADAP Situation
• ADAPs considering new/additional cost-containment
measures
– Arizona: waiting list
– Hawaii: waiting list
– Illinois: waiting list, reduced formulary, lowered FPL, capped
enrollment, monthly expenditure cap
– Kentucky: reduced formulary
– Louisiana: capped enrollment
– North Carolina: lowered FPL
– North Dakota: waiting list, reduced formulary, capped
enrollment, annual expenditure cap
– Oregon: waiting list, reduced formulary
– South Dakota: reduced formulary
– Wyoming: lowered FPL, annual expenditure cap
Current ADAP Asks
• ADAPs are in need of additional federal funding:
– ADAPs need an emergency appropriation of $126
million in FY2010 funds
– In FY2011 ADAPS need $370 million (includes $126 m)
• ADAPs are currently funded at $835 m in FY10
• Additional FY10 funding would allow states to
eliminate waiting lists and other costcontainment measures and allow maintenance of
programs.
Current ADAP Asks
• ADAPs are seeing a record number of people in
need of their services due to the economic
downturn. Individuals are losing their jobs,
insurance and are increasingly in need of safety
net services such as the Ryan White Program.
• In FY2009, ADAPs saw an average monthly
growth of 1,271 clients. This is an increase of 80
percent from FY2008 when ADAPs experienced
an average monthly growth of 706 clients.
ADAP activism: 15 years of fighting for
lifesaving meds
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National ADAP Working Group
ATAC’s SAVE ADAP Committee
National ADAP Coalition
aaa+
Numerous state-based efforts
SAVE California’s ADAP
SAVE America’s ADAPs – activism through
social networking
Your voice is needed more than ever
• We can’t let people fall through the cracks
while we wait for health care reform
• Many ADAP advocates have burnt out/moved
on. New leaders are needed
• Grassroots activism/personal stories have led
to ADAP funding success in the past
• Obama Administration has said it needs to
hear from community
SAVE
CALIFORNIA’S
ADAP
Save California’s ADAP Facebook
Save California’s ADAP
Rallies
Save California’s ADAP
Action Alerts and Press Releases
SAVE
AMERICA’S
ADAPs
Save America’s ADAPs Facebook
Save America’s ADAPs Change.org Petition to Obama
How you can make a difference
• Come to Save America’s ADAPs affinity session
tomorrow
• Call, email, meet with your elected
representatives
• Letters to editor
• Rallies, press conferences
• Join Save America’s ADAPs facebook page
More actions
• Send an email to President Obama through
change.org petition:
http://tinyurl.com/adapletter
• Sign your organization to a letter urging
President Obama to provide emergency ADAP
funding. Email [email protected] for a
copy.
Contact Information
Ann Lefert
NASTAD
P: 202.434.7138
[email protected]
Ryan Clary
Project Inform
P: 415.558.8669 x224
[email protected]
Michael Friedman
Project Inform
[email protected]