The Status of AIDS Drug Assistance Programs ADAPs

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The Status of AIDS Drug Assistance Programs
(ADAPs)

• American Bar Association
• AIDS Coordinating Committee
• October 2003

Presented by Murray C. Penner, Director of Care
and Treatment Programs and Danielle Davis,
Senior Manager of Care and Treatment
Programs National Alliance of State and
Territorial AIDS Directors (NASTAD) www.nastad.org

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What We Will Discuss

• Structure of ADAPs
• Funding of ADAPs
• Who uses ADAPs
• Current access restrictions for ADAPs
• Formulary (drug) coverage
• Challenges for ADAPs and responses
• How can you help

NASTAD
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What are ADAPs?

• AIDS Drug Assistance Programs are authorized
  through the Ryan White CARE Act (Title II)
• Legislation allows each state to determine
  formularies, eligibility, drug purchasing
  methods, distribution of drugs, etc. Programs
  vary WIDELY
• In addition for ARV and other drugs, allows for
  paying insurance premiums and co-pays (insurance
  purchasing)
• Allows for adherence and outreach programs
  (flexibility spending)
• Are payer of last resort (Medicaid, VA, private
  insurance pay for drugs FIRST)

NASTAD
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How are ADAPs Structured?

• Usually located within and operated by the State
  or Territorial Health Department (sometimes
  Medicaid)
• Usually located in the same department as the
  state or territorial Ryan White Title II program
• Entry points vary from state to state
• Centralized access program
• Network of providers that assist with access
  (e.g., local health departments, AIDS service
  organizations, etc.)
• Pharmacy access
• Centralized (usually state) pharmacy mail order
• Network of pharmacies providing
  convenience/choice to clients
• Medication Advisory Committees

NASTAD
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ADAP Programs are Unique

• Neither entitlement programs nor health insurers
• (are not assured of funding and cannot raise
  premiums in order to generate additional
  revenue)
• Do not receive cost-effective benefits of
  antiretroviral (ARV) treatments (reduced
  hospitalizations, etc.)
• Serve as the final safety net program for those
  not eligible for Medicaid/Medicare
• Rely on other services provided through the CARE
  Act in order to effectively serve clients
  (medical and supportive services)

NASTAD
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Many ADAPs are in Crisis Mode

• Increased utilization
• Medicaid and state budget cuts forcing people
  onto ADAPs
• Increased drug prices (ADAP Crisis Task Force)
• People living longer and remaining on ADAPs
• Flat federal and state funding (some decreases)
• New and expensive treatments (Fuzeon)

NASTAD
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How are ADAPs Funded?

• 57 jurisdictions are receiving ADAP funding in
  FY03 (April 1, 2003 March 31, 2004)
• Federal funding in FY03 -- 714 million,
  including over 21 million for supplemental
  awards (to severe need states)
• Federal funding in FY02 -- 639 million,
  including nearly 20 million for supplemental
  awards
• State funding in FY02 -- 36 states contributed
  160 million (down from 38 states in FY01)
• Twelve of 51 Title I EMAs contributed 20 million
  in FY02 (down from 25 million in FY01)
• Total ADAP funding in FY02 roughly 878 million
  (compared to 810 million in FY01)
• Roughly a 80/20 percent federal/state
  contribution
• Severe need states include those with
  restricted financial or medical eligibility
  standards or limited formulary composition, as of
  January 1, 2000 requires a 1 to 4 state match

Source 2003 National ADAP Monitoring Report
NASTAD
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Who uses ADAP?

• 80,035 unduplicated clients served in June 2002
  (a 4 increase from June 2001)
• 120,385 unduplicated clients enrolled in June
  2002
• Client utilization has increased 154 since 1996
• ADAPs spent an average of 838 per month, per
  client served in June 2002 (86, or 718 was for
  ARVs)
• In June 2002, clients served were
• 33 African American 78 Male
• 25 Hispanic 21 Female
• 37 White Non-Hispanic 1 Transgendered
• 5 Asian/PI/AI/AN/Other or unknown

Source 2003 National ADAP Monitoring Report
NASTAD
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The ADAP Watch

• As of September 2003, 15 ADAPs have closed
  enrollment to new clients or limited access to
  antiretroviral (ARV) and other treatments
• Four additional states report the likelihood of
  implementing ADAP restrictions prior to the end
  of FY2003
• Currently, there are nearly 750 people on ADAP
  waiting lists nationwide

Source NASTAD National ADAP Monitoring TA
Program
NASTAD
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The ADAP Watch, September 2003
NH
VT
ME
WA
MT
ND
NY
MN
MA
OR
ID
WI
SD
RI
MI
CT
WY
PA
IA
NJ
OH
NE
IN
DE
NV
Guam
IL
WV
VA
UT
MD
CO
KS
KY
MO
CA
NC
TN
DC
OK
SC
NM
AZ
AR
GA
AL
MS
AK
LA
Puerto Rico
TX
FL
HI
Virgin Islands
States with waiting lists and/or access
restrictions in place in September 2003
(15 ADAPs).
States with current restrictions and anticipate
the need to implement additional restrictions in
FY2003 (began April 1, 2003) (2 ADAPs WA and
OK).
States anticipating waiting lists and/or access
restrictions prior to the end of FY2003 (March
31, 2004) (2 ADAPs).
NASTAD
Source NASTAD National ADAP Monitoring TA
Program
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ADAP Watch Summary

• Thirteen of the 15 states with restrictions have
  closed their program to new enrollees
• Nearly 750 people are on waiting lists (AL, CO,
  IN, KY, MT, NE, NC, OR, SD, WV)
• Four states have reduced drug formularies
• Colorado, Oklahoma, Oregon, Washington (during
  the past year)
• Two states with current restrictions anticipate
  implementing additional restrictions prior to the
  end of the fiscal year

NASTAD
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Formulary Coverage

• Four states reduced drug formulary over the past
  fiscal year
• Colorado, Nebraska, Oklahoma, Oregon, Washington
• Four states/territories have an open formulary
• Massachusetts, New Hampshire, New Jersey, and the
  Commonwealth of the Northern Mariana Islands
• Two states cover ARV medications only
• Louisiana and Utah

NASTAD
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State/Territorial ADAP Formulary Coverage
February 2003
NH
VT
ME
WA
MT
ND
NY
MN
MA
OR
ID
WI
SD
RI
MI
CT
WY
PA
IA
NJ
OH
NE
IN
NV
DE
Guam
IL
WV
VA
UT
MD
CO
KS
KY
MO
CA
NC
TN
DC
OK
SC
NM
AZ
AR
GA
MS
AL
LA
Puerto Rico
TX
AK
FL
HI
Virgin Islands
State ADAPs that cover only antiretrovirals
(ARVs) (3 ADAPs).
State ADAPs that cover ARVs and medications to
treat/prevent opportunistic infection (OI) (23
ADAPs).
State ADAPs that cover ARVs, OI and other
medications (28 ADAPs).
NASTAD
Source 2003 National ADAP Monitoring Report
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Restricted Access

• Three states have expenditure or prescription
  restrictions
• Texas restricts number of monthly prescriptions
  for ARVs (since FY1996)
• South Dakota limits annual spending on ARVs to
  7,000 per patient (since FY2001)
• Idaho limits monthly expenditures to 1,200 per
  patient (since 8/2002)

NASTAD
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Lowered FPL Eligibility

• Four jurisdictions lowered financial eligibility
  criteria during the past year
• U.S. Virgin Islands lowered eligibility last year
  to 200 from 220 of the federal poverty level
• Oregon lowered eligibility to 200 from 325
• Washington lowered eligibility to 300 from 370
• Wyoming lowered eligibility to 200 from 300
• Texas is considering lowering eligibility to 140
  from 200
• Federal Poverty Level (FPL) in 2003 is
  8,980 for a household of one and 12,120 for a
  household of two (higher in Alaska and Hawaii)

NASTAD
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Low FPL Eligibility

• North Carolina has the lowest eligibility level
  at 125 of FPL (11,225 for a household of one)
• Twelve states have eligibility levels at 200 of
  FPL
• Guam, ID, IA, LA, NE, OK, OR, TX, UT, VT, VI, and
  WY
• Over 80 of clients served in June 2002 were at
  or below 200 of FPL
• Almost 50 of clients served in June 2002 were at
  or below 100 of FPL

NASTAD
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Upcoming Challenges

• Increasing demand (more people with HIV living
  longer)
• CDCs Advancing HIV Prevention Initiative
• Rapid testing
• Success of outreach and testing programs
• Very small funding increases proposed for FY2004
• Economic downturn (state and federal deficits,
  Medicaid cutbacks)
• Rising unemployment (e.g., loss of health
  insurance)
• Increasing drug prices (new therapies)
• State match and Maintenance of Effort (MOE)
  requirements/difficulties

NASTAD
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Responses to Challenges

• Continued emphasis on administrative savings
• Insurance continuation purchasing
• Imposing restrictions and reductions
• Section 340B Purchasing (49 of 54 states)
• ADAP Crisis Task Force negotiations with
  manufacturers of ARVs to lower prices projected
  savings of 60 million nationwide in FY03
• ETHA (Early Treatment for HIV Act)
• Alternative Methods Demonstration Projects
• Reauthorization of the CARE Act in 2005

NASTAD
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How Can You Help?

• Advocacy for increased federal funding (214
  million for FY04)
• Advocacy for increased state funding
• Ryan White Title II Planning Groups (Consortia or
  Advisory Committees)
• ADAP Medication Advisory Committees
• SAVE ADAP and other national activist
  organizations
• Local AIDS Service Organizations or activist
  organizations
• Early Treatment for HIV Act (ETHA)
• VOTE for candidates that support broad access to
  health care!

NASTAD
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Resources

• NASTAD (www.nastad.org)
• National ADAP Monitoring Project Annual Report
  (April 2003)
• ADAP Funding Watch (August 2003)
• Kaiser Family Foundation (KFF)
• www.kff.org
• The Henry J. Kaiser Family Foundation HIV/AIDS
  Policy Fact Sheet AIDS Drug Assistance Programs
  (ADAPs), April 2003
• AIDS Treatment Data Network (ATDN)
• www.atdn.org/access.adap