The State of ADAPs Update on the ADAP Crisis. Britten Pund National Alliance of State & Territorial AIDS Directors November 12, 2011

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1 The State of ADAPs Update on the ADAP Crisis Britten Pund National Alliance of State & Territorial AIDS Directors November 12, 2011

2 Presentation Agenda Highlights from the 2011 National ADAP Monitoring Project Annual Report Update on the ADAP Crisis Questions and Answers

3 Highlights from the 2011 National ADAP Monitoring Project Annual Report

4 The National ADAP Budget In FY2010, the national ADAP budget grew to $1.79 billion, a 13% increase from FY2009. Other State or Federal $5,018,513 (<1%) Part A Contribution Directed to ADAP $15,288,430 (1%) The National ADAP Budget, by Source, FY2010 Drug Rebates $522,589,581 (29%) Part B ADAP Earmark $800,033,562 (45%) All funding streams increased incrementally over the last year. State Contribution $346,239,277 (19%) ADAP Emergency Funding $24,999,313 (1%) Part B Supplemental Contribution Directed to ADAP $12,500,358 (1%) Total = $1.79 billion Part B Base Contribution Directed to ADAP $20,573,517 (1%) Part B ADAP Supplemental $41,750,000 (2%)

5 ADAP Expenditures, FY2009 In FY2009, ADAPs expended $1.4 billion on prescription drugs, representing 85% of all ADAP expenditures. ADAPs expended $176.1 million on insurance payments, representing 10% of all ADAP expenditures. Two percent of ADAP funds were expended for program administration costs. Adherence and Monitoring $10,791,413 (1%) Client Outreach $1,363,314 (<1%) Insurance Copayments and Deductibles $74,457,786 (4%) Insurance Premiums $101,623,665 (6%) Prescription Dispensing Costs $17,090,460 (1%) ADAP Expenditures, FY2009 Quality Management $3,373,897 (<1%) Program Administration $27,146,476 (2%) Total = $1.7 billion Client Enrollment Costs $4,537,753 (<1%) Other $6,923,355 (<1%) Prescription Drugs $1,430,230,842 (85%)

6 Clients Served ADAP Client Enrollment and Utilization FY2009 On average, 2,806 new clients were enrolled in ADAP each month in FY ,000 ADAP Client Utilization, June ,000 39% 125, , , ,000 80,000 60,000 40,000 20,000 31,317 43,494 24% 61,822 53,765 15% 69,407 12% 76,743 11% 80,035 4% 85,825 7% 94,577 96,404 96, ,987 10% 6% 2% -0.3% 110,047 8% 14% 8%

7 Seventy-seven percent (77%) of ADAP clients are male. Blacks and Hispanics comprise 55% (33% and 22% respectively) of ADAP clients served. Almost half (48%) of ADAP clients are between the ages of 45 and 64. Seventy-five percent (75%) of ADAP clients had income levels at or below 200% of the Federal Poverty Level (FPL). ADAP Client Gender, Race/Ethnicity, and Age Native Hawaiian/Pacific Islander <1% ADAP Clients Served, by Race/Ethnicity, June 2010 American Indian/Alaskan Native <1% Hispanic 22% Asian 1% Multi-Racial 5% Non-Hispanic White 35% Other 1% Unknown 2% Non-Hispanic Black/African American 33%

8 Federal Poverty Level ADAP Client Demographics ADAP Clients Served, by Income Level, June 2010 Unknown 3% >400% FPL 1% % FPL 5% % FPL 14% % FPL 19% % FPL 11% 100% FPL 45% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Percent of Clients

9 ADAP Client Insurance Status Twenty-two percent (22%) of ADAP clients had private insurance. ADAP Clients Served, by Insurance Status, June 2010 Medicaid 9% Medicare 13% Seven percent (7%) of ADAP clients were dual beneficiaries of both Medicaid and Medicare. Dually Eligible (Medicaid & Medicare) Private Insurance Uninsured 7% 22% 61% 0% 10% 20% 30% 40% 50% 60% 70% Percent of Clients

10 ADAP Eligibility Criteria ADAP income eligibility in June 2010 ranged from 200% FPL in eight states to 500% FPL in six. Fourteen ADAPs reported having asset limits in place in June 2010.

11 Per Capita Expenditures Average Monthly Cost Per Client ADAP Average Monthly Cost Per Client, June $1,200 $1,000 $842 $831 $883 $902 $1,024 $1,064 $991 $982 $1,005 $995 $949 $800 $758 $757 $600 $611 $471 $400 $200 $

12 Number of Clients (June) Fiscal Year Expenditures (in millions) ADAP Insurance Coordination Clients Served and Estimated Expenditures in Insurance Purchasing and Continuation, ,000 $ ,369 $ ,000 $159 $160 80,000 $107 $120 60,000 $75 $84 $75 $80 40,000 20,000 $19 5,272 $30 $38 7,167 7,277 12,311 13,744 20,960 15,843 30,621 $ $-

13 ADAP Insurance Coordination In June 2010, 110,338 ADAP clients were served through insurance coordination. Clients served through insurance coordination more than tripled since June Spending on insurance purchasing/continuation represented an estimated $139 per capita in June 2010, about 15% of the average monthly cost per client, based on drug expenditures, in that month ($949).

14 ADAP Waiting Lists

15 NASTAD Process for Updates Weekly updates Monday-Wednesday connect with ADAPs anticipating cost-containment and waiting lists to check on current program status Thursday requesting an updated number of individuals currently on each states ADAP waiting list, as of that date Friday compile information received and release ADAP waiting list update

16 NASTAD Reporting Process ADAP waiting list update contains individuals who have: Completed the application process for their state ADAP Been deemed eligible for the ADAP in their state Been placed on the state s ADAP waiting list or unmet need list Information captured each week at the same point in time (all states provide an updated number based on a date provided by NASTAD)

17 What the ADAP Watch Does Not Capture Individuals who have not presented to ADAP Individuals who have presented but were not eligible Individuals who may have been disenrolled Individuals who have fallen out of ADAP (e.g., no longer taking drugs, moved, obtained other coverage) Individuals who may be in one or more of the above categories and accessing a PAP for medications

18 ADAP Waiting List Update

19 ADAP Waiting Lists (6,489 individuals in 12 states), as of November 3, 2011 State Number of Individuals on ADAP Waiting List Percent of the Total ADAP Waiting List Increase/Decrease from Previous Reporting Period Date Waiting List Began Alabama % 16 October 2011 Florida 3,260 50% -26 June 2010 Georgia 1,415 22% -9 July 2010 Idaho % -5 February 2011 Louisiana** 489 8% -217 June 2010 Montana % 0 January 2008 Nebraska 8 0.1% 5 October 2011 North Carolina 78 1% 8 January 2010 Ohio 0 0% 0 July 2010 South Carolina 60 1% 14 March 2010 Utah % 1 May 2011 Virginia 1,091 17% 13 November 2010

20 Waiting List Organization Of the 12 states with ADAP waiting lists, seven ADAPs utilize a first-come, first-served model for prioritizing clients. Of the 12 states with ADAP waiting lists, four ADAPs utilize a medical criteria model for prioritizing clients. One ADAP utilizes an income criteria model to prioritize clients on their waiting list.

21 Waiting List Demographics ADAP waiting list clients, by Race/Ethnicity, as of August 3, % 25% 16% 1% 4% 4% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Non-hispanic Black/African American (48%) Non-hispanic White (25%) Hispanic (16%) Asian (<1%) Native Hawaiian/Pacific Islander (<1%) American Indian/Alaskan Native (<1%) Multi-racial (1%) Other (4%) Unknown (4%) ADAP waiting list clients, by Gender, as of August 3, % 26% 2% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Male (71%) Female (26%) Transgender (<1%) Unknown (2%)

22 Access to Medications Case management services are being provided to clients on ADAP waiting lists through: ADAP (1 ADAP) Ryan White Part B (8 ADAPs) Contracted agencies (4 ADAPs) Other agencies, including other Parts of Ryan White (5 ADAPs).

23 ADAP Cost-containment Measures

24 Factors Leading to Implementation of Cost-containment As of August 3, 2011, ADAPs reported the following factors contributing to consideration or implementation of cost containment measures: Level federal funding awards (28 ADAPs) Higher demand for ADAP services as a result of increased unemployment (27 ADAPs) Increased demand for ADAP services due to comprehensive HIV testing efforts (23 ADAPs) Escalating drug costs (20 ADAPs) Decreases in state general funding for ADAPs (16 ADAPs)

25 ADAPs with Other Cost-containment Measures: Financial Eligibility, as of August 3, 2011 State Lowered Financial Eligibility Disenrolled Clients Arkansas 500% to 200% FPL 99 clients (September 2009) Illinois 500% to 300% FPL Grandfathered in current clients from % FPL North Dakota 400% to 300% FPL Grandfathered in current clients from % FPL Ohio 500% to 300% FPL 257 clients (July 2010) South Carolina 550% to 300% FPL Grandfathered in current clients from % FPL Utah 400% to 250% FPL 89 clients (September 2009)

26 ADAPs with Cost-containment and Anticipated Cost-containment Examples of cost-containment measures currently in place or anticipated: Reduced formulary Restricted eligibility criteria Capped enrollment Once the enrollment cap is reached, ADAP will establish a waiting list. Expenditure caps Client cost-sharing

27 The ADAP Year in Review

28 The Perfect Storm Minimal increases in federal appropriations Heightened national efforts on HIV testing and linkages into care Fluctuations in state funding ADAP High drug costs Increased demand due to unemployment and other economic challenges Revised HIV treatment guidelines; earlier treatment

29 Patient Protection and Affordable Care Act Patient Protection and Affordable Care Act (PPACA) signed into law in March Some portions of reform that will impact ADAPs specifically are: Medicaid eligibility expansion (2014); Increase in the number of individuals covered by insurance plans (2014); ADAPs Medicare Part D expenditures counting toward True Out Of Pocket (TrOOP) expenditures (2011); Narrowing and closing of the Medicare Part D doughnut hole (ongoing); An increase in the Medicaid rebate amount for purchased drugs; and (2010); and 340B pricing transparency.

30 Pharmaceutical Partners Contributions In May 2010, pharmaceutical partners augmented current agreements with ADAPs including: Providing deeper discounts; Increased rebates; and/or Price freezes to ADAP. Savings to ADAPs total $1.2 billion since May Pharmaceutical partners expanded the reach of Patient Assistance Programs (PAPs) and participated in Welvista for waiting list clients.

31 Funding for FY2011 ADAP FY2011 began on April 1, 2011 FY2011 (ongoing) federal awards recently released $40 million additional appropriations (Emergency Relief Funding Continued $25 million in FY2010 emergency funding 30 states received awards ranging from $74,324 (ND) to $6,979,996 (FL) 5 states received $3 million State fiscal years began July 1, 2011

32 Coordinated Strategy to Save America s ADAPs Secure additional resources for ADAP from the federal government: The HIV/AIDS community is advocating for an increase of $106 million for ADAPs for a total funding of $991 million in FY2012. Maintain, restore and increase resources for ADAPs from state governments. Continue agreements between ADAPs and pharmaceutical manufacturers to provide financial stability and augment existing agreements, when possible.

33 Questions and Answers

34 Resources For an electronic copy of the 2011 National ADAP Monitoring Project Annual Report, please visit

35 Contact Information Britten Pund Manager, Health Care Access NASTAD Phone: (202)