The Status of AIDS Drug Assistance Programs (ADAPs)

1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. “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

10. The ADAP Watch, September 2003 NH VT ME WA MT ND NY MN MA OR ID WI RI SD MI CT WY PA IA NJ OH NE IN DE NV Guam IL WV UT VA CO MD KS MO KY CA NC TN DC OK SC AZ NM 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). Source: NASTAD National ADAP Monitoring & TA Program NASTAD

11. “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

12. 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

13. 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 UT VA CO MD KS MO KY CA NC TN DC OK SC AZ NM 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). Source: 2003 National ADAP Monitoring Report NASTAD

14. 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

15. 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

16. 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

17. Upcoming Challenges • Increasing demand (more people with HIV living longer) • CDC’s 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

18. 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

19. 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

20. 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