1. AIDS Drug Assistance Programs: Utilization, Program Restrictions and Waiting Lists Ryan Clary & Michael Friedman, Project Inform Ann Lefert, National Alliance of State and Territorial AIDS Directors

2. Overview of Presentation Key ADAP terms Understanding ADAP statistics – how do they help tell the story? Current ADAP situation ADAP asks History of ADAP activism Current advocacy opportunities Small-group messaging work

3. What are ADAPs? All states receive Ryan White funds to provide FDA approved medications to low income individuals with HIV disease who have limited or no coverage to private insurance or Medicaid/Medicare. ADAPs may purchase insurance and wrap-around all other payers.

4. Key ADAP Terms Eligibility Criteria – ADAPs are allowed to set their own Federal Poverty Level (FPL) as their eligibility criteria. Current eligibility criteria range from 200% to 500% FPL. The bulk of ADAP clients have incomes at or below 200% FPL. Formulary – ADAP drug list that establishes the number of drugs available to ADAP clients. Each state sets their own formulary, but must have at least 1 drug from each therapeutic class.

5. Key ADAP Terms Cost-containment measure – blanket term used to describe access restrictions in an ADAP. Common cost- containment measures are: – Lowered financial eligiblity levels – Reduced formulary (taking drugs off the formulary) – Capped enrollment – no new clients can enter the program – ADAP waiting lists – clients have been placed on a waiting list to receive drugs through ADAP – Expenditure caps – a limit on monthly or annual spending on drugs per client – Client cost-sharing – a requirement that clients contribute a portion of their drug costs. In states that have this currently – it is only targeting the highest-income clients

6. Key ADAP Terms Coordination of Benefits – activities undertaken to ensure that the appropriate costs are paid for by the responsible payer when multiple payers exist. Payer of Last Resort – by law, Ryan White programs are the payer of last resort. They can only pay for services if no other payers are available

7. Key ADAP Terms Patient Assistance Programs – a program generally run through a pharmaceutical manufacturer to provide free or greatly subsidized medications to indigent patients.

8. ADAP Statistics Sources for ADAP Statistics: – NASTAD ADAP Watch: www.nastad.orgwww.nastad.org – NASTAD Annual ADAP Monitoring Report: – HIV/AIDS Bureau, Health Resources and Services Administration: www.hab.hrsa.govwww.hab.hrsa.gov – Specific State websites – database of state information can be found on NASTADs site: http://www.nastad.org/About/res_state_Director y.aspx http://www.nastad.org/About/res_state_Director y.aspx

9. ADAP Statistics ADAP Watch – Provides information on current cost-containment measures – ADAP Waiting Lists garner lots of attention, but any cost-containment measure has chilling affect on programs National ADAP Monitoring Report – Provides in-depth information on all 57 ADAPs including: funding, client demographics, client utilization, expenditure data, etc.

10. ADAP Statistics Client Demographics – Race/ethnicity – Age – Gender – Income Levels – Insurance Status

11. ADAP Clients Served, by Race/Ethnicity, June 2008

12. ADAP Clients Served, by Gender, June 2008

13. ADAP Clients Served, by Age, June 2008

14. ADAP Clients Served, by Income Level, June 2008

15. ADAP Clients Served, by Insurance Status, June 2008

16. ADAP Statistics The total ADAP budget in a state can be made up of many different components: – Federal ADAP earmark – ADAP supplemental funding (if eligible) – State general revenue – Part B base funding – Contributions from Part A grantees – Drug rebates

17. Part B ADAP Earmark FY2000 – FY2010

18. The National ADAP Budget, by Source, FY2003 and FY2008

19. Current ADAP Situation ADAPs are currently in crisis 15 states have implemented or are anticipating having to implement cost- containment measures other than waiting lists 10 states have ADAP waiting lists

20. ADAP Waiting Lists and Cost-Containment, as of April 15, 2010

21. Current ADAP Situation ADAP Waiting Lists, as of April 15, 2010 Total of 938 individuals in 10 states – Idaho: 26 individuals – Iowa: 69 individuals – Kentucky: 191 individuals – Montana: 17 individuals – North Carolina: 400 individuals – South Carolina: 48 individuals – South Dakota: 32 individuals – Tennessee: 61 individuals – Utah: 80 individuals – Wyoming: 14 individuals

22. Current ADAP Situation ADAPs with other cost-containment measures since April 1, 2009 – Arizona: reduced formulary – Arkansas: reduced formulary, lowered FPL to 200% – Colorado: reduced formulary – Hawaii: individuals with CD4>350 not currently on ARV therapy are not being enrolled (not pregnant women) – Iowa: reduced formulary – Kentucky: reduced formulary – Missouri: reduced formulary – North Carolina: reduced formulary – North Dakota: cap on Fuzeon – Utah: reduced formulary, lowered FPL to 250% – Washington: client cost sharing, reduced formulary (for uninsured clients only)

23. Current ADAP Situation ADAPs considering new/additional cost-containment measures – Arizona: waiting list – Hawaii: waiting list – Illinois: waiting list, reduced formulary, lowered FPL, capped enrollment, monthly expenditure cap – Kentucky: reduced formulary – Louisiana: capped enrollment – North Carolina: lowered FPL – North Dakota: waiting list, reduced formulary, capped enrollment, annual expenditure cap – Oregon: waiting list, reduced formulary – South Dakota: reduced formulary – Wyoming: lowered FPL, annual expenditure cap

24. Current ADAP Asks ADAPs are in need of additional federal funding: – ADAPs need an emergency appropriation of $126 million in FY2010 funds – In FY2011 ADAPS need $370 million (includes $126 m) ADAPs are currently funded at $835 m in FY10 Additional FY10 funding would allow states to eliminate waiting lists and other cost- containment measures and allow maintenance of programs.

25. Current ADAP Asks ADAPs are seeing a record number of people in need of their services due to the economic downturn. Individuals are losing their jobs, insurance and are increasingly in need of safety net services such as the Ryan White Program. In FY2009, ADAPs saw an average monthly growth of 1,271 clients. This is an increase of 80 percent from FY2008 when ADAPs experienced an average monthly growth of 706 clients.

26. ADAP activism: 15 years of fighting for lifesaving meds National ADAP Working Group ATACs SAVE ADAP Committee National ADAP Coalition aaa+ Numerous state-based efforts SAVE Californias ADAP SAVE Americas ADAPs – activism through social networking

27. Your voice is needed more than ever We cant let people fall through the cracks while we wait for health care reform Many ADAP advocates have burnt out/moved on. New leaders are needed Grassroots activism/personal stories have led to ADAP funding success in the past Obama Administration has said it needs to hear from community

28. SAVE CALIFORNIAS ADAP

29. Save Californias ADAP Facebook

30. Save Californias ADAP Rallies

31. Save Californias ADAP Action Alerts and Press Releases

32. SAVE AMERICAS ADAPs

33. Save Americas ADAPs Facebook

34. Save Americas ADAPs Change.org Petition to Obama

35. How you can make a difference Come to Save Americas ADAPs affinity session tomorrow Call, email, meet with your elected representatives Letters to editor Rallies, press conferences Join Save Americas ADAPs facebook page

36. More actions Send an email to President Obama through change.org petition: http://tinyurl.com/adapletter http://tinyurl.com/adapletter Sign your organization to a letter urging President Obama to provide emergency ADAP funding. Email rclary@projectinform.org for a copy.rclary@projectinform.org

37. Contact Information Ann LefertRyan Clary NASTADProject Inform P: 202.434.7138P: 415.558.8669 x224 alefert@nastad.orgrclary@projectinform.org Michael Friedman Project Inform mfriedman@projectinform.org