1. AIDS Drug Assistance Programs (ADAPs): Access and Advocacy NAPWA “Staying Alive” Conference August 15, 2003 Presented by Murray C. Penner, Director of Care and Treatment Programs National Alliance of State and Territorial AIDS Directors (NASTAD) www.nastad.org

2. What We Will Cover Structure of ADAPs Structure of ADAPs Funding of ADAPs Funding of ADAPs Who uses ADAPs Who uses ADAPs Current access restrictions for ADAPs Current access restrictions for ADAPs Formulary (drug) coverage Formulary (drug) coverage Challenges for ADAPs and responses Challenges for ADAPs and responses How can you help How can you help NASTAD

3. What are ADAPs? AIDS Drug Assistance Programs are authorized through the Ryan White CARE Act (Title II) 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 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) 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) Allows for adherence and outreach programs (flexibility spending) Are payer of last resort (Medicaid, VA, private insurance pay for drugs FIRST) Are payer of last resort (Medicaid, VA, private insurance pay for drugs FIRST) NASTAD

4. How are ADAPs Structured? Usually located within and operated by the State or Territorial Health Department (sometimes Medicaid) 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 Usually located in the same department as the state or territorial Ryan White Title II program Entry points vary from state to state Entry points vary from state to state Centralized access program Centralized access program Network of providers that assist with access Network of providers that assist with access Pharmacy access Pharmacy access Centralized (usually state) pharmacy – mail order Centralized (usually state) pharmacy – mail order Network of pharmacies providing convenience/choice to clients Network of pharmacies providing convenience/choice to clients Medication Advisory Committees Medication Advisory Committees NASTAD

5. ADAP Programs are Unique Neither entitlement programs nor health insurers Neither entitlement programs nor health insurers (are not assured of funding and cannot raise “premiums” in order to generate additional revenue) (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.) 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 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) Rely on other services provided through the CARE Act in order to effectively serve clients (medical and supportive services) NASTAD

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

7. How are ADAPs Funded? 57 jurisdictions are receiving ADAP funding in FY03 (April 1, 2003 – March 31, 2004) 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 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 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) 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) 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) Total ADAP funding in FY02 – roughly $878 million (compared to $810 million in FY01) Roughly a 80/20 percent federal/state contribution 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 * 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

8. Who uses ADAP? 80,035 unduplicated clients served in June 2002 (a 4% increase from June 2001) 80,035 unduplicated clients served in June 2002 (a 4% increase from June 2001) 120,385 unduplicated clients enrolled in June 2002 120,385 unduplicated clients enrolled in June 2002 Client utilization has increased 154% since 1996 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) 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: In June 2002, clients served were: 33% African American78% Male 33% African American78% Male 25% Hispanic21% Female 25% Hispanic21% Female 37% White Non-Hispanic1% Transgendered 37% White Non-Hispanic1% Transgendered 5% Asian/PI/AI/AN/Other or unknown 5% Asian/PI/AI/AN/Other or unknown Source: 2003 National ADAP Monitoring Report NASTAD

9. “The ADAP Watch” As of August 2003, 16 ADAPs have closed enrollment to new clients or limited access to antiretroviral (ARV) and other treatments As of August 2003, 16 ADAPs have closed enrollment to new clients or limited access to antiretroviral (ARV) and other treatments Two of those 16 report the need for additional restrictions prior to the end of FY2003 (March 31, 2004) Two of those 16 report the need for additional restrictions prior to the end of FY2003 (March 31, 2004) Three additional states report the likelihood of implementing ADAP restrictions prior to the end of FY2003 Three additional states report the likelihood of implementing ADAP restrictions prior to the end of FY2003 NASTAD Source: NASTAD National ADAP Monitoring & TA Program

10. 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 AR GA ID IL IN KYMO MT NV NH OH SC SD TX VA WY OK ME MD NJ NY OR AK CO LA UT CA KS MS FL HI NMAZ ND MN IA WI MI NE WA PA NC TN 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 NASTAD Source: NASTAD National ADAP Monitoring & TA Program

11. Closed Enrollment Twelve of the 16 states with restrictions have closed their program to new enrollees Twelve of the 16 states with restrictions have closed their program to new enrollees Nearly 650 people are on waiting lists (indicated by parentheses) Nearly 650 people are on waiting lists (indicated by parentheses) Alabama (89) Alabama (89) Alaska (1) Alaska (1) Arkansas Arkansas 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

12. Reduced Formularies Six states have reduced drug formularies Six states have reduced drug formularies Colorado, Nebraska, New York, Oklahoma, Oregon, Washington (during the past year) Colorado, Nebraska, New York, Oklahoma, Oregon, Washington (during the past year) Nebraska reduced formulary from 96 to 19 medications as of 1/1/03 Nebraska reduced formulary from 96 to 19 medications as of 1/1/03 Other states are considering reducing drug formularies Other states are considering reducing drug formularies Texas will announce plans in September 2003 Texas will announce plans in September 2003 NASTAD

13. 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 AR GA ID IL IN KYMO MT NV NH OH SC SD TX VA WY OK ME MD NJ NY OR AK CO LA UT CA KS MS FL HI NMAZ ND MN IA WI MI 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). NASTAD Source: 2003 National ADAP Monitoring Report

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

15. Lowered FPL* Eligibility Four jurisdictions lowered financial eligibility criteria during the past year: 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 U.S. Virgin Islands lowered eligibility last year to 200% from 220% of the federal poverty level Oregon lowered eligibility to 200% from 325% Oregon lowered eligibility to 200% from 325% Washington lowered eligibility to 300% from 370% Washington lowered eligibility to 300% from 370% Wyoming lowered eligibility to 200% from 300% Wyoming lowered eligibility to 200% from 300% Texas is considering lowering eligibility to 140% from 200% 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) * 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

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

17. Cost-sharing One state imposed co-payments for prescriptions based on income One state imposed co-payments for prescriptions based on income In FY2002, Washington imposed cost-sharing for enrollees over 125% FPL, ranging from $40 to $60 per prescription, depending on income In FY2002, Washington imposed cost-sharing for enrollees over 125% FPL, ranging from $40 to $60 per prescription, depending on income California recently considered imposing large co-pays per prescription for people over 200% of the FPL California recently considered imposing large co-pays per prescription for people over 200% of the FPL NASTAD

18. Upcoming Challenges Increasing demand (more people with HIV living longer) Increasing demand (more people with HIV living longer) CDC’s Advancing HIV Prevention Initiative CDC’s Advancing HIV Prevention Initiative Rapid testing Rapid testing Success of outreach and testing programs Success of outreach and testing programs Very small funding increases proposed for FY2004 Very small funding increases proposed for FY2004 Economic downturn (state and federal deficits, Medicaid cutbacks) Economic downturn (state and federal deficits, 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) requirements/difficulties State match and Maintenance of Effort (MOE) requirements/difficulties NASTAD

19. Responses to Challenges Continued emphasis on administrative savings Continued emphasis on administrative savings Insurance continuation purchasing Insurance continuation purchasing Imposing restrictions and reductions Imposing restrictions and reductions Section 340B Purchasing (49 of 54 states) 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 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) ETHA (Early Treatment for HIV Act) Alternative Methods Demonstration Projects Alternative Methods Demonstration Projects Reauthorization of the CARE Act in 2005 Reauthorization of the CARE Act in 2005 NASTAD

20. How Can You Help? Advocacy for increased federal funding ($283 million for FY04) Advocacy for increased federal funding ($283 million for FY04) Advocacy for increased state funding Advocacy for increased state funding Ryan White Title II Planning Groups (Consortia or Advisory Committees) Ryan White Title II Planning Groups (Consortia or Advisory Committees) ADAP Medication Advisory Committees ADAP Medication Advisory Committees Reauthorization of the Ryan White CARE Act Reauthorization 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 organizations SAVE ADAP and other national activist organizations Local AIDS Service Organizations or activist organizations Local 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 care! VOTE for candidates that support broad access to health care! NASTAD

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