The ADAP Crisis: How We Got Here and How We Can Fix It Murray Penner, Deputy Executive Director January 29, 2011

Represents the nation’s chief health agency HIV/AIDS and viral hepatitis staff in all 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands and the U.S. Pacific Islands –Provides technical assistance and other support to health department HIV/AIDS and viral hepatitis programs –Provides national leadership on HIV/AIDS and viral hepatitis policy and programs –Educates about and advocates for necessary federal and state funding of HIV/AIDS and viral hepatitis programs National Alliance of State and Territorial AIDS Directors (NASTAD)

Status of State ADAPs

Perfect Storm for ADAPs ADAP Crisis Increased Demand Due to Unemploy- ment Minimal Increases in Federal Appropriations State Fiscal Crises and Less than Adequate Appropriations Expanded Testing Efforts Improved Client Health/ Continued Program Need Revised HIV Treatment Guidelines Increasing Drug Costs

Size of the Gap That Needs to be Filled Varies by State Medicaid Program Medicaid Program STATE A STATE B

ADAP Client Demographics 77% male 57% Blacks and Hispanics (31% and 26% respectively) Almost half (47%) between the ages of 45 and 64 77% of incomes at or below 200% of the federal poverty level

ADAP Clients Served, by Income Level, June 2009

ADAP Clients Served, by Insurance Status, June 2009

ADAP Client Enrollment and Utilization. June ,554 new clients enrolled in ADAP each month in FY2008 (200,673 annually) In June 2009, ADAPs provided medications to 125,479 clients (14% increase over June 2008 and the largest increase since 1999 )

National ADAP Budget The national ADAP budget climbed to almost $1.6 billion in FY2009, a 5% increase from FY2008 The ADAP earmark comprised less than half (49%) of the total ADAP budget (first time less than 50% since 1997)

The National ADAP Budget, by Source, FY2003 and FY2009 The federal share of the national ADAP budget has decreased from 67 percent in FY2003 to 49 percent in FY2009.

National ADAP Budget

National ADAP Earmark

State Funding for ADAP

Drug Rebates

Current ADAP Crisis

ADAP Cost-containment, instituted since April 1, 2009 Arizona: reduced formulary Arkansas: reduced formulary, lowered financial eligibility to 200% FPL, disenrolled 99 clients in September 2009) Colorado: reduced formulary Florida: reduced formulary Georgia: reduced formulary, implemented medical criteria, continued participation in the Alternative Method Demonstration Project (AMDP) Idaho: capped enrollment Illinois: reduced formulary, instituted monthly expenditure cap Kentucky: reduced formulary Louisiana: discontinued reimbursement of laboratory assays New Jersey: reduced formulary North Carolina: reduced formulary North Dakota: capped enrollment, instituted annual expenditure cap, lowered financial eligibility to 300% FPL Ohio: reduced formulary, lowered financial eligibility to 300% FPL (disenrolled 257 clients in July 2010) Puerto Rico: reduced formulary South Carolina: lowered financial eligibility to 300% FPL Utah: reduced formulary, lowered financial eligibility to 250% FPL (disenrolled 89 clients in FY2010) Virginia: reduced formulary Washington: instituted client cost sharing, reduced formulary (for uninsured clients only) Wyoming: reduced formulary

Reduced Financial Eligibility, instituted since April 1, 2009 Arkansas: Lowered from 500% to 200% FPL North Dakota: Lowered from 400% to 300% FPL Ohio: Lowered from 500% to 300% FPL Rhode Island: Lowered from 400% to 200% FPL South Carolina: Lowered from 550% to 300% FPL Utah: Lowered from 400% to 250% FPL

ADAP Waiting Lists, as of January 20, ,779 individuals in 10 states*, as of January 27, 2011 Arkansas: 23 individuals Florida: 3,008 individuals Georgia: 879 individuals Louisiana: 621 individuals** Montana: 19 individuals North Carolina: 106 individuals Ohio: 368 individuals South Carolina: 359 individuals Virginia: 395 individuals Wyoming: 1 individual *As a result of ADAP emergency funding, Hawaii, Idaho, Iowa, Kentucky, South Dakota, and Utah eliminated their waiting lists. **Louisiana has a capped enrollment on their program. This number is a representation of their current unmet need.

ADAP Solutions

Funding Strategy Federal government State government Pharmaceutical partners

FY2010 Federal Funding On July 9, 2010, HHS announced the availability of $25 million in redirected funds for ADAPs. This money was intended for states with waiting lists and those that had put in place cost containment measures. Awards to 30 states and territories were announced on Aug. 24 th –Awards ranged from $38,111 in Alaska to $6.9 million in Florida. The $25 million, in combination with the Part B supplemental awards (totaling $17.5 million) allowed several states to clear their waiting lists. –However, was not enough for others.

State Funding State budget cuts have hit HIV/AIDS programs hard. In FY2009, states lost more than $167 million to HIV/AIDS programs. 153 open/unfilled positions, 66 positions eliminated in HIV/AIDS programs. 20 states report hiring freezes. 13 states have mandatory staff furloughs ranging from 1 to 36 days. Additional staff/capacity impacts: Pay cuts Pay freezes Freezes on promotions

State Funding In FY2010, states showed signs of prioritizing ADAP: –States contributed over $336 million in state general revenue funds: increase of $138.5 million from FY2009. –19 states provided increases to ADAPs (AL, CA, CO, GA, IL, IA, MT, NE, NV, NH, NJ, NY, NC, OH, PA, VA, WA, WV & WI). –12 states cut funding to ADAP (FL, ID, MN, MS, OK, OR, RI, SC, TN & TX). However, Center for Budget Policy & Priorities warns that 2012 could be most challenging year of recession for state budgets.

Pharmaceutical Response The ADAP Crisis Task Force reached agreements with 7 of the 8 HIV antiretroviral manufacturers to provide deeper discounts, increased rebates and price freezes to ADAP. Since the Task Force’s inception in 2003, agreements have provided concessions of over $1.1 billion to ADAPs. The Task Force also worked with companies to expand the reach of Patient Assistance Programs (PAPs). Six companies are also participating in Welvista, a unique PAP which provides coordinated access to medications for individuals on ADAP waiting lists.

Solutions to the ADAP Crisis Increase grassroots state and federal advocacy efforts! Develop new messages to speak to more conservative-leaning legislators. Continue to increase efficiencies in ADAP administration and ensure interface with other public payer systems. Continue working with Administration and Congress to increase funding. HIV/AIDS community looking at all options to address the crisis. A new version of the ACCESS ADAP Act (Addressing Cost Containment Measures to Ensure the Sustainability and Success of ADAP Act) introduced last year by Senators Burr (R-NC) and Coburn (R-OK)?

Federal Funding Outlook All ADAPs need increased funds to deal with increased demands. ADAPs must receive additional funding in FY2011 and FY2012. FY2011 funding is in jeopardy. –House Republicans have signaled a series of short-term resolutions funding the government for FY2011. –Harder lift to ensure ADAP increase. –Before holidays – Senate had included a $65 million increase for ADAPs in their Omnibus spending bill.

Federal Funding Outlook HIV/AIDS community regrouping after election to determine best strategy to work with new Republican-controlled House and tight fiscal environment. Conducting many meetings to gather intelligence and get advice from friendly offices (both Democrats and Republicans). Believe we need a shift in approach and cannot continue to advocate for huge increases. –One approach is to advocate for amount that ADAP was authorized for in the 2009 Ryan White reauthorization.

Contact Information National Alliance of State & Territorial AIDS Directors Murray Penner Deputy Executive Director