AIDS Drug AIDS Drug Assistance Assistance

Programs (ADAPs): Programs (ADAPs):

Access and AdvocacyAccess and AdvocacyNAPWA “Staying Alive” ConferenceNAPWA “Staying Alive” Conference

August 15, 2003August 15, 2003

Presented by Murray C. Penner, Director of Care and Presented by Murray C. Penner, Director of Care and Treatment ProgramsTreatment ProgramsNational Alliance of State and Territorial AIDS Directors National Alliance of State and Territorial AIDS Directors (NASTAD)(NASTAD)www.nastad.orgwww.nastad.org

What We Will CoverWhat We Will Cover

Structure of ADAPsStructure of ADAPs Funding of ADAPsFunding of ADAPs Who uses ADAPsWho uses ADAPs Current access restrictions for Current access restrictions for

ADAPsADAPs Formulary (drug) coverageFormulary (drug) coverage Challenges for ADAPs and responsesChallenges for ADAPs and responses How can you helpHow can you help

NASTAD

What are ADAPs?What are ADAPs? AIDS Drug Assistance Programs are authorized AIDS Drug Assistance Programs are authorized

through the Ryan White CARE Act (Title II)through the Ryan White CARE Act (Title II) Legislation allows each state to determine Legislation allows each state to determine

formularies, eligibility, drug purchasing formularies, eligibility, drug purchasing methods, distribution of drugs, etc. Programs methods, distribution of drugs, etc. Programs vary WIDELYvary WIDELY

In addition for ARV and other drugs, allows for In addition for ARV and other drugs, allows for paying insurance premiums and co-pays paying insurance premiums and co-pays (insurance purchasing)(insurance purchasing)

Allows for adherence and outreach programs Allows for adherence and outreach programs (flexibility spending)(flexibility spending)

Are payer of last resort (Medicaid, VA, private Are payer of last resort (Medicaid, VA, private insurance pay for drugs FIRST)insurance pay for drugs FIRST)

NASTAD

How are ADAPs How are ADAPs Structured?Structured?

Usually located within and operated by the State Usually located within and operated by the State or Territorial Health Department (sometimes or Territorial Health Department (sometimes Medicaid)Medicaid)

Usually located in the same department as the Usually located in the same department as the state or territorial Ryan White Title II program state or territorial Ryan White Title II program

Entry points vary from state to state Entry points vary from state to state Centralized access programCentralized access program Network of providers that assist with accessNetwork of providers that assist with access

Pharmacy accessPharmacy access Centralized (usually state) pharmacy – mail orderCentralized (usually state) pharmacy – mail order Network of pharmacies providing convenience/choice to Network of pharmacies providing convenience/choice to

clients clients Medication Advisory Committees Medication Advisory Committees

NASTAD

ADAP Programs are ADAP Programs are Unique Unique

Neither entitlement programs nor health insurersNeither entitlement programs nor health insurers (are not assured of funding and cannot raise (are not assured of funding and cannot raise

“premiums” in order to generate additional “premiums” in order to generate additional revenue)revenue)

Do not receive cost-effective benefits of Do not receive cost-effective benefits of antiretroviral (ARV) treatments (reduced antiretroviral (ARV) treatments (reduced hospitalizations, etc.)hospitalizations, etc.)

Serve as the final “safety net” program for those Serve as the final “safety net” program for those not eligible for Medicaid/Medicare not eligible for Medicaid/Medicare

Rely on other services provided through the Rely on other services provided through the CARE Act in order to effectively serve clients CARE Act in order to effectively serve clients (medical and supportive services)(medical and supportive services)

NASTAD

Many ADAPs are in Crisis Many ADAPs are in Crisis ModeMode

Increased utilizationIncreased utilization Medicaid and state budget cuts forcing Medicaid and state budget cuts forcing

people onto ADAPspeople onto ADAPs Increased drug prices (ADAP Crisis Task Increased drug prices (ADAP Crisis Task

Force)Force) People living longer and remaining on ADAPsPeople living longer and remaining on ADAPs Flat federal and state funding (some Flat federal and state funding (some

decreases)decreases) New and expensive treatments (Fuzeon)New and expensive treatments (Fuzeon)

NASTAD

How are ADAPs Funded?How are ADAPs Funded? 57 jurisdictions are receiving ADAP funding in FY03 57 jurisdictions are receiving ADAP funding in FY03

(April 1, 2003 – March 31, 2004)(April 1, 2003 – March 31, 2004) Federal funding in FY03 -- $714 million, including Federal funding in FY03 -- $714 million, including

over $21 million for supplemental awards (to severe over $21 million for supplemental awards (to severe need states*)need states*)

Federal funding in FY02 -- $639 million, including Federal funding in FY02 -- $639 million, including nearly $20 million for supplemental awards nearly $20 million for supplemental awards

State funding in FY02 -- 36 states contributed $160 State funding in FY02 -- 36 states contributed $160 million (down from 38 states in FY01)million (down from 38 states in FY01)

Twelve of 51 Title I EMAs contributed $20 million in Twelve of 51 Title I EMAs contributed $20 million in FY02 (down from $25 million in FY01)FY02 (down from $25 million in FY01)

Total ADAP funding in FY02 – roughly $878 million Total ADAP funding in FY02 – roughly $878 million (compared to $810 million in FY01)(compared to $810 million in FY01)

Roughly a 80/20 percent federal/state contributionRoughly a 80/20 percent federal/state contribution

* Severe need states include those with restricted financial or medical * Severe need states include those with restricted financial or medical eligibility standards or limited formulary composition, as of January 1, eligibility standards or limited formulary composition, as of January 1, 2000 – requires a $1 to $4 state match2000 – requires a $1 to $4 state matchSource: 2003 National ADAP Monitoring Report

NASTAD

Who uses ADAP?Who uses ADAP? 80,035 unduplicated clients served in June 2002 80,035 unduplicated clients served in June 2002

(a 4% increase from June 2001) (a 4% increase from June 2001) 120,385 unduplicated clients enrolled in June 120,385 unduplicated clients enrolled in June

20022002 Client utilization has increased 154% since 1996Client utilization has increased 154% since 1996 ADAPs spent an average of $838 per month, per ADAPs spent an average of $838 per month, per

client served in June 2002 (86%, or $718 was for client served in June 2002 (86%, or $718 was for ARVs) ARVs)

In June 2002, clients served were:In June 2002, clients served were: 33% African American33% African American 78% Male78% Male 25% Hispanic25% Hispanic 21% Female21% Female 37% White Non-Hispanic37% White Non-Hispanic 1% Transgendered 1% Transgendered 5% Asian/PI/AI/AN/Other5% Asian/PI/AI/AN/Other or unknown or unknown

Source: 2003 National ADAP Monitoring Report

NASTAD

““The ADAP Watch”The ADAP Watch”

As of August 2003, 16 ADAPs have As of August 2003, 16 ADAPs have closed enrollment to new clients or closed enrollment to new clients or limited access to antiretroviral (ARV) limited access to antiretroviral (ARV) and other treatmentsand other treatments

Two of those 16 report the need for Two of those 16 report the need for additional restrictions prior to the end additional restrictions prior to the end of FY2003 (March 31, 2004)of FY2003 (March 31, 2004)

Three additional states report the Three additional states report the likelihood of implementing ADAP likelihood of implementing ADAP restrictions prior to the end of FY2003 restrictions prior to the end of FY2003

NASTADSource: NASTAD National ADAP Monitoring & TA Program

States with waiting lists and/or access restrictions in place in June 2003 (14 ADAPs).

States anticipating waiting lists and/or access restrictions prior to the end of FY2003 (March 31, 2004) (3 ADAPs).

AL

ARGA

ID

IL IN

KYMO

MT

NV

NH

OH

SC

SD

TX

VA

WY

OK

ME

MD

NJ

NY

OR

AK

CO

LA

UT

CAKS

MS

FL

HI

NMAZ

NDMN

IA

WIMI

NE

WA

PA

NCTN

WV

VT

MA

RI

DE

CT

Guam

Virgin Islands

Puerto Rico

DC

States with current restrictions and anticipate the need to implement additional restrictions in FY2003 (began April 1, 2003) (2 ADAPs – WA and OK).

“The ADAP Watch,” August 2003

NASTADSource: NASTAD National ADAP Monitoring & TA Program

Closed EnrollmentClosed Enrollment Twelve of the 16 states with restrictions have Twelve of the 16 states with restrictions have

closed their program to new enrolleesclosed their program to new enrollees Nearly 650 people are on waiting lists (indicated Nearly 650 people are on waiting lists (indicated

by parentheses)by parentheses) Alabama (89)Alabama (89) Alaska (1)Alaska (1) ArkansasArkansas Colorado (28)Colorado (28) Idaho Idaho Indiana (47)Indiana (47) Kentucky (135)Kentucky (135) Nebraska (36)Nebraska (36) North Carolina North Carolina Oregon (228)Oregon (228) South Dakota (52)South Dakota (52) West Virginia (12)West Virginia (12)

NASTAD

Reduced FormulariesReduced Formularies

Six states have reduced drug formularies Six states have reduced drug formularies Colorado, Nebraska, New York, Oklahoma, Colorado, Nebraska, New York, Oklahoma,

Oregon, Washington (during the past year)Oregon, Washington (during the past year) Nebraska reduced formulary from 96 to 19 Nebraska reduced formulary from 96 to 19

medications as of 1/1/03medications as of 1/1/03 Other states are considering reducing Other states are considering reducing

drug formulariesdrug formularies Texas will announce plans in September 2003Texas will announce plans in September 2003

NASTAD

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/Territorial ADAP Formulary Coverage February 2003

AL

ARGA

ID

IL IN

KYMO

MT

NV

NH

OH

SC

SD

TX

VA

WY

OK

ME

MD

NJ

NY

OR

AK

CO

LA

UT

CAKS

MS

FL

HI

NMAZ

NDMN

IA

WIMI

NE

WA

PA

NC

TN

WV

VT

MA

RI

DE

CT

Guam

Virgin Islands

Puerto Rico

DC

State ADAPs that cover ARVs, OI and other medications (28 ADAPs).

NASTADSource: 2003 National ADAP Monitoring Report

Restricted AccessRestricted Access

Three states have expenditure or Three states have expenditure or prescription restrictionsprescription restrictions Texas restricts number of monthly Texas restricts number of monthly

prescriptions for ARVs (since FY1996) prescriptions for ARVs (since FY1996) South Dakota limits annual spending on South Dakota limits annual spending on

ARVs to $7,000 per patient (since ARVs to $7,000 per patient (since FY2001)FY2001)

Idaho limits monthly expenditures to Idaho limits monthly expenditures to $1,200 per patient (since 8/2002)$1,200 per patient (since 8/2002)

NASTAD

Lowered FPL* EligibilityLowered FPL* Eligibility Four jurisdictions lowered financial Four jurisdictions lowered financial

eligibility criteria during the past year:eligibility criteria during the past year: U.S. Virgin Islands lowered eligibility last year U.S. Virgin Islands lowered eligibility last year

to 200% from 220% of the federal poverty to 200% from 220% of the federal poverty levellevel

Oregon lowered eligibility to 200% from 325%Oregon lowered eligibility to 200% from 325% Washington lowered eligibility to 300% from Washington lowered eligibility to 300% from

370%370% Wyoming lowered eligibility to 200% from Wyoming lowered eligibility to 200% from

300% 300% Texas is considering lowering eligibility to Texas is considering lowering eligibility to

140% from 200%140% from 200% * Federal Poverty Level (FPL) in 2003 is $8,980 for a household of one and $12,120 for a * 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)household of two (higher in Alaska and Hawaii)NASTAD

Low FPL EligibilityLow FPL Eligibility

North Carolina has the lowest eligibility North Carolina has the lowest eligibility level at 125% of FPL ($11,225 for a level at 125% of FPL ($11,225 for a household of one)household of one)

Twelve states have eligibility levels at 200% Twelve states have eligibility levels at 200% of FPLof FPL Guam, ID, IA, LA, NE, OK, OR, TX, UT, VT, VI, and Guam, ID, IA, LA, NE, OK, OR, TX, UT, VT, VI, and

WYWY

Over 80% of clients served in June 2002 Over 80% of clients served in June 2002 were at or below 200% of FPLwere at or below 200% of FPL

Almost 50% of clients served in June 2002 Almost 50% of clients served in June 2002 were at or below 100% of FPLwere at or below 100% of FPL

NASTAD

Cost-sharingCost-sharing

One state imposed co-payments for One state imposed co-payments for prescriptions based on incomeprescriptions based on income

In FY2002, Washington imposed cost-In FY2002, Washington imposed cost-sharing for enrollees over 125% FPL, sharing for enrollees over 125% FPL, ranging from $40 to $60 per ranging from $40 to $60 per prescription, depending on incomeprescription, depending on income

California recently considered imposing California recently considered imposing large co-pays per prescription for large co-pays per prescription for people over 200% of the FPLpeople over 200% of the FPL

NASTAD

Upcoming ChallengesUpcoming Challenges Increasing demand (more people with HIV living Increasing demand (more people with HIV living

longer)longer) CDC’s Advancing HIV Prevention InitiativeCDC’s Advancing HIV Prevention Initiative Rapid testingRapid testing Success of outreach and testing programsSuccess of outreach and testing programs

Very small funding increases proposed for FY2004Very small funding increases proposed for FY2004 Economic downturn (state and federal deficits, Economic downturn (state and federal deficits,

Medicaid cutbacks)Medicaid cutbacks) Rising unemployment (e.g., loss of health insurance)Rising unemployment (e.g., loss of health insurance) Increasing drug prices (new therapies) Increasing drug prices (new therapies) State match and Maintenance of Effort (MOE) State match and Maintenance of Effort (MOE)

requirements/difficultiesrequirements/difficulties

NASTAD

Responses to ChallengesResponses to Challenges Continued emphasis on administrative savingsContinued emphasis on administrative savings Insurance continuation purchasing Insurance continuation purchasing Imposing restrictions and reductionsImposing restrictions and reductions Section 340B Purchasing (49 of 54 states)Section 340B Purchasing (49 of 54 states) ADAP Crisis Task Force – negotiations with ADAP Crisis Task Force – negotiations with

manufacturers of ARVs to lower prices – manufacturers of ARVs to lower prices – projected savings of $60 million nationwide in projected savings of $60 million nationwide in FY03FY03

ETHA (Early Treatment for HIV Act)ETHA (Early Treatment for HIV Act) Alternative Methods Demonstration ProjectsAlternative Methods Demonstration Projects Reauthorization of the CARE Act in 2005Reauthorization of the CARE Act in 2005

NASTAD

How Can You Help?How Can You Help? Advocacy for increased federal funding ($283 million for Advocacy for increased federal funding ($283 million for

FY04)FY04) Advocacy for increased state funding Advocacy for increased state funding Ryan White Title II Planning Groups (Consortia or Ryan White Title II Planning Groups (Consortia or

Advisory Committees)Advisory Committees) ADAP Medication Advisory CommitteesADAP Medication Advisory Committees Reauthorization of the Ryan White CARE ActReauthorization of the Ryan White CARE Act

Public meetings – Sept. 12 (DC), Sept. 25 (Miami), Oct. 3 (LA)Public meetings – Sept. 12 (DC), Sept. 25 (Miami), Oct. 3 (LA) SAVE ADAP and other national activist organizationsSAVE ADAP and other national activist organizations Local AIDS Service Organizations or activist organizationsLocal AIDS Service Organizations or activist organizations Early Treatment for HIV Act (ETHA) Early Treatment for HIV Act (ETHA) VOTE for candidates that support broad access to health VOTE for candidates that support broad access to health

care!care!

NASTAD

ResourcesResources NASTAD (www.nastad.org)NASTAD (www.nastad.org)

National ADAP Monitoring Project Annual National ADAP Monitoring Project Annual Report (April 2003)Report (April 2003)

ADAP Funding Watch (August 2003)ADAP Funding Watch (August 2003) Kaiser Family Foundation (KFF)Kaiser Family Foundation (KFF)

www.kff.orgwww.kff.org The Henry J. Kaiser Family Foundation The Henry J. Kaiser Family Foundation

HIV/AIDS Policy Fact Sheet: AIDS Drug HIV/AIDS Policy Fact Sheet: AIDS Drug Assistance Programs (ADAPs), April 2003Assistance Programs (ADAPs), April 2003

AIDS Treatment Data Network (ATDN)AIDS Treatment Data Network (ATDN) www.atdn.org/access.adapwww.atdn.org/access.adap