United We Stand Advocating for Ourselves

1. United We StandAdvocating for Ourselves Please take a few moments before this session to fill out the Survey in the front of your syllabus on pgs 3 & 4. Thank You for Your Participation Today!

2. United We Stand: SC HIV Task ForceAdvocating for Ourselves Michael Bivens Peer/Volunteer/Client Advocacy Coordinator Catawba Care Communications Chair SC HIV Task Force

3. United We StandAdvocating for Ourselves • Welcome • Advocacy: From Then To Now • Lobbying, Advocacy & Activism • Our Talking Points • Get To The Point • Look Right, Act Right, Speak Right • Practicing Advocacy • Uniting For Advocacy • Conclusion

4. Who is the Task Force? The SC HIV Task Force is a non-partisan advocacy coalition of individuals, non-profit organizations and allies committed to ensuring access to quality HIV prevention, treatment care and linkage to services.

5. Some History • Advocacy • From Then To Now

6. Some History – the early 80’s 1974 The Shanti Project 1981 June - CDC reports first cases of rare pneumonia in young gay men 1982 January - Gay Men's Health Crisis (GMHC) March - First AIDS Hotline July - CDC replaces the term GRID (Gay-Related Immune Deficiency) with AIDS (Acquired Immune Deficiency Syndrome) 1983 The Denver Principles 1985 HIV is determined to be the cause of AIDS

7. Some History – The Denver Principles (1983) We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS.“ RECOMMENDATIONS FOR ALL PEOPLE 1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

8. Some History – The Denver Principles RECOMMENDATIONS FOR PEOPLE WITH AIDS • Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies. • Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations. • Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

9. Some History – the late 80’s 1st International AIDS Conference held in Atlanta American Foundation for AIDS Research (amfAR) founded 1985 1986 “Surgeon General's Report on AIDS" calls for education and condom use April - National Minority AIDS Council (NMAC) formed 1987 1st antiretroviral drug (AZT ) approved by FDA March - AIDS Coalition to Unleash Power (ACT UP) established in New York ACT UP demonstrates at FDA headquarters in protest of slow pace of drug approval process FDA establishes Treatment Investigational New Drugs (IND) which accelerates drug approval NIAID established the AIDS Clinical Trials Group (ACTG) 1988 U.S. Surgeon General C Everett Koop mails brochure, "Understanding AIDS" First comprehensive needle exchange program (NEP) established 1989 ACT UP demonstrates calling for a significant change in AIDS treatment research ACT UP members invited to discuss Parallel Track with Anthony S. Fauci, M.D. ACT UP stops trading on the Stock Exchange floor AIDS activists protest at U.S. headquarters of Burroughs Wellcome Burroughs Wellcome lowers the price of AZT

10. Some History – the early 90’s May - Housing Opportunities for People with AIDS (HOPWA) Act August - Ryan White CARE Act in enacted by Congress 1990 1991 Treatment Action Group (TAG) 1993 The National Association of People With AIDS (NAPWA) convenes the first annual “AIDS Watch” to lobby for increased AIDS funding President Clinton establishes the White House Office of National AIDS Policy (ONAP) 1994 POZ, an award-winning print magazine, is established 1995 June - NAPWA launches the first National HIV Testing Day The Presidential Advisory Council on HIV/AIDS (PACHA) commission formed by President Bill Clinton 1996 The beginning of HARRT triple-drug therapy PLWHA diagnosed before this date would go on to be known as “Long Term Survivors”

11. Some History – the 2000’s 2000 aidsmeds.com ADAP funding crisis begins 2003 President's Emergency Plan for AIDS Relief (PEPFAR) under President George W. Bush National Alliance of State and Territorial AIDS Directors (NASTAD) forms the ADAP Crisis Task Force to negotiate with the drug industry for lower drug prices 2004 President George W. Bush increases emergency ADAP Funding December - President Bush signed the reauthorization of the Ryan White HIV/AIDS Program. There was also a shift of some funding to rural areas and the South, taking money away from areas where the epidemic began, such as San Francisco and New York. Creation of the SC HIV Task Force in response to the ADAP Funding Crisis 2006 July - the Senate Appropriations Committee passed the Financial Services appropriations bill for 2009, which included an allocation of $1.4 million to develop a National AIDS Strategy. 2008

12. Some History – the 2010’s January - travel ban, which had banned HIV positive people from entering the US since 1987, was lifted. July - President Obama released the National HIV/AIDS Strategy 2010 2012 SC State Legislature overrides Governor Halley’s veto and funds ADAP for $4.1 million dollars recurring for 4 years, with an additional $1 million for FY2012,2013,2014 June - National Federation of Independent Business v. Sebelius - Medicaid Expansion disconnected from Patient Protection and Affordable Care Act (ACA) September - FDA approves the first HIV home test President Barack Obama increases emergency ADAP funding to clear the Waiting List 2013 November - there were no HIV-positive people on ADAP waiting lists, as a result of a large-scale investment from the Obama Administration, which has sustained the funding levels to run ADAP Medicaid Expansion rejected by SC Governor Nikki Halley / SC State Legislature 2014 June – Atlanta Principles

13. Some History – The Atlanta Principles (2014) • Sexually Frank HIV Prevention Messaging • Treatment as Prevention (TasP) • Pharmaceutical Prophylaxes: PrEP & PEP • Funding HIV Prevention: Targeting Populations at Highest Risk, Funding New Prevention Efforts and Older Ones, Funding that Rewards Success • HIV Testing and Identifying Acute HIV Infection (Seroconversion Illness) • Need for More Sensitive HIV Epidemiology • Reforming National HIV Behavioral Surveillance (NHBS) • CDC and Sex Education • The Lives of People with HIV Inform Clinical Practice • CDC’s Ongoing Partnership with HIV-Affected Communities

14. Some Definitions Advocacy, Activism & Lobbying

15. Some Definitions Lobbying Attempting to influence legislators to support or oppose a particular issue or piece of legislation. There are two types of lobbying: Direct Lobbying and Grassroots Lobbying. Activism An intentional action to bring about social and/or political change. This action is in support of, or opposition to, one side of an often controversial argument. Often the word "activism" is used to mean "protest". However activism can be a wide range of actions. Advocacy Advocacy is educating and creating awareness among legislators and the general public about issues facing the community and the importance of aligning public policy to address the need. Advocacy does not endorse or oppose specific legislation, but rather informs the community at large how public policy impacts access to services.

16. Definitions of Advocacy • Advocating for Yourself • With your doctor – For services – For your future • Advocating for Others • Friends & Family – Chronic Illnesses – Other PLWH • Advocating is Education • Public – Legislators – Other PLWH

17. Some Definitions in the Survey • What is advocacy? A -- The act of supporting a cause • What is lobbying? A -- Supporting a specific piece of Legislature • To talk to a legislator you must… D -- Have something to say

18. Some Definitions in the Survey • Advocating for HIV means . . . D All of the above • Influencing decision makers by making them aware of the needs of HIV prevention, along with treatment and care of People Living with HIV (PLWH) • Supporting HIV service agencies by knowing where their strengths lie and being able to describe their services • Fostering advocacy in the HIV community by using Talking Points to educate others about the HIV epidemic • Where can you speak to a Legislator? E All of the Above • In their office in Columbia • In their home office back in their county • At a public event • Outside the Senate or House Chamber

19. Some Facts Our Talking Points

20. Some Facts The Talking Points of the SC HIV Task Force • ADAP Crisis • Medicaid Expansion • Healthy Outcomes Plan • PrEP

21. Some Direction Get to the Point

22. Some Direction About Disclosure Purpose/Benefits of Disclosure as an Advocacy Tool • Reduces Stigma • Bring Awareness • Need a Moral/Point • Play to the Audience • Form of Peer Counseling

23. Some Strength • Why is it important to share my story? • What do I say? • What is the goal of telling my story? • Demonstrate a need for funding • Change Attitudes • Educate • Things to include in your story • Structure your story with a beginning, middle, and an end Using Your Story for Advocacy

24. Some Strength Look Right, Act Right, Speak Right

25. Some Strength • Look Right • Your Clothes • Act Right • Showing Decorum • Speak Right • Saying the Right Words the Right Way

26. Some Strength • It’s about educating Politicians and Citizens • Know your facts and defend your facts • Be Polite and put it into Perspective • After all is said and done Tips for Talking with Your Legislator

27. Some Strength • What to take with you • Be Personal • Provide Data • Be Focused • Be Positive • Make the Ask • Follow-up Tips on “The Talk”

28. Some Practice • At it’s core, advocacy is simply Speaking Out about an issue that concerns you.

29. Some Practical Practice

30. Some Practice Using Speech and Writing as Advocacy Tools • Writing • Letters, Emails, Postcard, Letter to the Editor, Opinion Piece • Speech • Rallies, Chamber, Capital Office, Home Office, Training Others

31. Practice Makes Perfect Problem - the issue Solution - "values" message Action - call to action

32. Practice Makes Perfect Practicing Advocacy – Role Playing

33. Some Partnership Uniting For Advocacy

34. Who is the Task Force? I am the Task Force You are the Task Force We are the Task Force • Johanna Haynes • PreviousSCHTF Chair

35. Some Partnership Be the Task Force Become A Member Consumer Empowerment Committee

36. Uniting for Advocacy • Duties • complete the Membership Form • A yearly Membership of $5 • attend meetings • use talking points • advocacy events • with task force • and on your own • Benefits • ID card (check in at meetings, ID at events) • access to all website information • inclusion on Task Force emails • a vote on issues presented to the Task Force • access to • Executive Committee Members • all sponsored events • all promotional materials • and all social media

37. The Take-Away • You already have a seat at all the tables as both Citizen & Consumer • Be Positive, Polite, Proud and Particular

38. United We Stand: SC HIV Task ForceEnhancing Partnerships: Stronger Together Michael Bivens Peer/Volunteer/Client Advocacy Coordinator Catawba Care Communications Chair SC HIV Task Force

39. Answers to the Survey Multiple Choice Acronyms 1 a 2 b 3 d 4 c 5 b 6 b 7 a 8 d 9 c 10 c 11 a 12 d 13 c 14 d 15 e 09 10 07 04 02 08 03 06 01 05