NASTAD Annual Meeting May 3, 2009

1. NASTAD Annual MeetingMay 3, 2009 National Policy Updates and Hill Visit Preparation Julie Scofield and Laura Hanen

2. Overview of Presentation • Landscape • Obama Administration • 111th Congress • AIDS Community • Hepatitis Community • Policy Updates & Key Messages • Ryan White Extension • Health Reform • National AIDS Strategy • FY2010 Funding

3. Landscape

4. Obama Administration • Jeff Crowley appointed National AIDS Coordinator • Member of the Domestic Policy Council and Nancy-Ann DeParle’s health reform team • Does not have deep knowledge of Ryan White, HIV prevention, or public health • Will hire a very small staff • Has not laid out plan for developing the National AIDS Strategy • Eric Goosby appointed Global AIDS Coordinator

5. Obama Administration • HHS Secretary Kathleen Sebelius sworn in last Tuesday • Need leadership at CDC, CMS and NIH and senior staff at HHS • Expect policy to be based on science not ideology • A number of former Hill staff in senior HHS positions • New HRSA Administrator Mary Wakefield pleasant departure from the past

6. 111th Congress • Overall, very partisan. Support for HIV & hepatitis more bi-partisan • House Speaker Nancy Pelosi (D-CA) and Energy and Commerce Committee Chair Henry Waxman (D-CA) • Long-time AIDS funding and policy advocates • Leadership roles in health reform debate • Fewer Republican moderates • House: Castle (DE), Bono, Mack (CA), Biggert (IL), Frelinghuysen (NJ), Kirk (IL), King (NY), Ros-Lehtinen (FL), Smith (NJ) • Senate: Collins (ME) and Snowe (ME) • House Labor-HHS-Education Appropriations Subcommittee • Minority members are very conservative • Given the Stimulus experience, a lot of basic education is needed on HIV and STDs

7. AIDS Community • Most of the community is participating in the Federal AIDS Policy Partnership (FAPP) • FAPP’s working groups are doing the policy work • Budget and Appropriations, Ryan White Program, Health Care Access, Prevention, and Research • Executive Directors and Policy Directors of national, regional, coalition organizations participate in AIDS in America • Strategic conversations and meetings with Feds • Limited national policy capacity

8. Hepatitis Community • Policy capacity of the community is limited • NASTAD provides leadership • Leads Hepatitis C Appropriations Partnership • Includes community and industry • Working to increase participation of B community • Chairs the National Viral Hepatitis Roundtable • Participates in Hepatitis C Advocates United • Grassroots listserv • Purpose is to build advocacy capacity

9. Public Health Community • Working with ASTHO Affiliate Council on collective voice for state-based public health • Sharing assessments of state budget cuts • Developing joint positions on health reform • Workforce and Health Equity committees • Communication on H1NI • Other players – Trust for America’s Health (TFAH), Campaign for Public Health, APHA, and National Association of County & City Health Officials (NACCHO)

10. Policy Updates & Key Messages

11. Overarching Message • Most staff know little about the disproportionate impact of the epidemic on gay men of all races and communities of color • Describe how programs are reaching gay men and racial and ethnic minority communities as well as challenges and unmet needs • Ryan White • HIV and hepatitis funding • Health Reform • Point to NASTAD website for more information

12. Ryan White Extension Action must be taken – current law “sunsets” in September 2009 “Community Consensus” for extension with “tweaks”, over 160 organizations signed-on Many competing priorities Little new information to inform 2009 process Client level data will be inaccurate & incomplete All HIV reporting systems nationwide are not mature Health reform outcome should inform next full Ryan White reauthorization

13. Ryan White Extension Waiting for Administration position National AIDS Coordinator in the mix New HRSA Administrator Mary Wakefield willing to engage and answer questions HRSA has internal white paper

14. Ryan White Extension Senate Health, Education, Labor and Pensions (HELP) Committee Democrats meeting with HRSA, asking questions, and assessing Senators’ needed fixes Kennedy will work with Enzi to prepare extension legislation Republicans have request into GAO on several RW issues Republicans support extension to maintain “important changes” made in 2006 House Energy and Commerce Committee Committee Chair Henry Waxman (D-CA) taking the lead and working with Health Subcommittee Chair Frank Pallone (D-NJ) Also meeting with HRSA and asking questions Carefully assessing community consensus document

15. Ryan White Extension Messages • ASK: Three-year extension of the Ryan White Program • “Community Consensus” with 165 organizations signed on • The Program will sunset on September 30, 2009 • Competing priorities in Congress, lack of full understanding of 2006 changes, and health reform discussion make extension prudent • May be asked about impact of 2006 reauthorization • May be asked to discuss Ryan White in a post health reform world • We need a sense of urgency for action!

16. Health Reform • 50 percent of people with HIV are NOT in regular care in the U.S. including: • 29 percent who are uninsured • 21 percent who don’t know they are infected • Also: • 29 percent simultaneously diagnosed with HIV & AIDS • 39 percent have an AIDS diagnosis within one year of diagnosis • Infection rate at 56,000 new cases per year (unchanged since 2001) Source: Kaiser and CDC

17. U.S.Population and People with HIV/AIDS Income & Unemployment Health Reform SOURCE: Kaiser Family Foundation based on US Census Bureau, 2006; Kaiser State Health Facts Online; Cunningham WE et al. “Health Services Utilization for People with HIV Infection Comparison of a Population Targeted for Outreach with the U.S. Population in Care.” Medical Care, Vol. 44, No. 11, November 2006. NOTE: US income data from 2005, US unemployment data from 2006. 1998 estimates were also 8% and 5%, respectively, rounded to nearest decimal; HCSUS data from 1998.

18. People with HIV/AIDS: Health Care Coverage of Those in Care General Population People with HIV/AIDS Population: 293 Million

19. Federal Funding for HIV/AIDS Care by Program, FY 2008 (in billions) Health Reform Total = $11.6 billion Sources: Kaiser Family Foundation based on OMB, CMS Office of the Actuary, HHS Office of Budget, 2008; CRS. AIDS Funding for Federal Government Programs: FY1981–FY2009, April 2008; KFF. Fact Sheet: U.S. Federal Funding for HIV/AIDS: The FY 2009 Budget Request; April 2008.

20. Health Reform • We have a disability care system, not a health system • The two primary publicly funded health care programs don’t provide care that meets the U.S. government’s own HIV treatment guidelines • To get access to almost ¾ of the pie chart -- you have to get so sick and disabled in order to get the care and medications that could have kept you healthy • This is the primary barrier

21. Health Reform • Ryan White Program • Serves over 500,000 people • Only health program for non-disabled people with HIV • Funding is not keeping up with need • Can’t meet all the health care needs of people with HIV/AIDS through an annual, discretionary funded program

22. Health Reform • Public Health and Prevention • Health system that is a sick care system with little focus on prevention • Public health infrastructure is crumbling • Federal investment in prevention is miniscule relative to care • Appropriators sought to provide significant resources through the stimulus and failed • Long-term savings of disease prevention and early intervention health care

23. Health Reform - Administration • President’s eight principles • Protect families’ financial health • Affordable coverage • Universality • Portability of coverage • Choice • Prevention and wellness • Patient safety and quality care • Long-term fiscal sustainability

24. Health Reform • Administration proposed down payment of $634 billion in reserve fund to finance health reform • By capping the deduction for charitable contributions and mortgage payments on households with incomes over $250,000 • By cost savings from changes to the Medicare and Medicaid programs • Reducing Medicare Advantage Plan overpayments • Increasing the Medicaid prescription drug price discount • Not paying for hospital readmissions for certain conditions

25. Health Reform - Senate • Finance Committee • Major Players: Max Baucus (D-MT), Jay Rockefeller (D-WV), Chuck Grassley (R-IA) and Orin Hatch (R-UT) • Other Key Players: Ron Wyden (D-OR) • HELP Committee • Major Players: Ted Kennedy (D-MA), Chris Dodd (D-CT), and Mike Enzi (R-WY) • Other Key Players: Barbara Mikulski (D-MD) and Tom Harkin (D-IA), Jeff Bingaman (D-NM)

26. Health Reform - House • Energy and Commerce Committee • Key Players: Henry Waxman (D-CA) and Frank Pallone (D-NJ) • Ways and Means Committee • Key Players: Charlie Rangel (D-NY) and Pete Stark (D-CA) • Education and Labor Committee • Key Players: George Miller (D-CA) and Rob Andrews (D-NJ) • House Whip Steny Hoyer (D-MD) has coordinating role

27. Health Reform - Congress • Senate Finance Committee is holding public roundtables and issuing papers for comment • Senate committees drafting separate bills to markup in June • Senate will merge bills after markups • House expects to have markups in July or September • Congress is taking the lead in close collaboration with the Administration • Can use “reconciliation” process if no bill by October 15 • How to pay the $1 trillion price tag is key

28. Health Reform Asks • Support creation of Prevention and Wellness Trust with dedicated funding of $20 billion a year • For state population based public health programs • Strengthen core disease surveillance and monitoring systems • Support a national electronic health information exchange system that integrates public health and clinical data • Address public health workforce shortages • Address the leading underlying causes of death, disability, and acute and chronic disease • Support coverage for comprehensive clinical preventive services

29. Health Reform Asks • Support HIV Health Care Access Working Group Platform • Strengthen Medicaid • Eliminate the disability requirement and expand access to all who are low income • Create a new national benefits package • Limit the amount low-income people pay • Cover voluntary, routine HIV testing • Create incentives to strengthen the HIV provider workforce • Support ETHA

30. Early Treatment for HIV Act(S 833/HR 1616) • ASK: Cosponsor bill and include in health reform legislation • Senators Chuck Schumer (D-NY) & Olympia Snowe (R-ME) • Representatives Eliot Engel (D-NY), Ileana Ros-Lehtinen (R-FL), and Speaker Nancy Pelosi (D-CA) • Allows states the option to expand Medicaid programs to cover HIV positive people, before they become disabled, without a waiver • Enhanced match rate maximizes state dollars already being spent • States can expand access to those with higher incomes • Brings Medicaid in line with Government’s own standards for treatment

31. Health Reform Asks • Strengthen Medicare • Allow ADAP to Count Towards TrOOP Under Medicare Part D • Eliminate the 2-year waiting period • Eliminate the “donut hole” and other cost sharing barriers • Continue to protect access to HIV meds • Continue Ryan White Program in order to fills gaps in care and essential support services not provided by other programs

32. National AIDS Strategy • Administration committed to development • Want federal agencies involved • Role of PACHA and CHAC is unknown • Seeking input from community on ideas • Congress provided $1.4 million for the NAS • National AIDS Strategy Coalition • Grassroots component wants regional meetings and Advisory Board • NASTAD supports NAS “lite” • Support focus on domestic crisis • Want few resources expended • Limited in scope • Not just another document to sit on a shelf • See great utility in leadership and getting the agencies to coordinate

33. FY2010 Funding • President to release his budget soon • House member request deadline has passed • House will begin marking up in June • Senate member request deadline May 15 • Senate hopes to mark up in July • Leadership is planning for regular order for bills with completion by October • Funding environment is tough

34. HIV, Hepatitis, and STD Funding Needs

35. HIV Care Funding Needs • Part B Base: • ASK: $113 million increase for a total of $514 million • Base is chronically underfunded and can’t keep up with need • Can’t routinize testing unless we can provide care • ADAP: • ASK: $269 million increase for total of $1 billion • Not keeping up with new clients and drug cost inflation • 62 people on waiting lists • ADAPs were staying afloat due to state resources, Medicare Part D savings and rebates/discounts from industry

36. HIV Prevention Funding Needs • ASK:$878 million increase for a total of $1.6 billion for CDC DHAP based on professional judgment • First step, $249 million increase to health department prevention and surveillance cooperative agreements • Expanded testing ETI grantees - describe success of new resources • Prevention co-ags have been cut by $21 million since FY2003 • Highlight NASTAD prevention policy agenda – we know what to do, we just need the resources to do it

37. Hepatitis Prevention Funding Needs • ASK: $32 million increase for a total of $50 million for hepatitis prevention • DVH receives $18.3 million • Seek to double Adult Viral Hepatitis Coordinator budget from $5 to $10 million (Avg. award $90,000) • Addressing outbreak by outbreak • No funding for public health services • Not building new silo, integrate into existing programs

38. STD and Other Funding Needs • STD prevention funding • ASK: $299 million increase for a total of $451 for • STD funding has decreased by $6 million since FY2006 • Alarming rates of new infection, particularly among young women • Cost effective: For every dollar spent on chlamydia control, $12 saved in future health costs • Minority AIDS Initiative • ASK: $200 million increase for a total of $610 million • HOPWA • ASK: $50 million increase for a total of $360 million

39. National Alliance of State & Territorial AIDS Directors 202.434.8090 www.NASTAD.org