Welcome!

1. Welcome! The NASTAD Webinar regarding ADAP Advocacy will begin shortly. We will begin roll call at 3:05pm ET.

2. Webinar and Conference Call Etiquette • To unmute your phone line • Press *7 to unmute • Questions • There will be dedicated time for questions • Please wait until the Q & A sections to ask Questions on the phone • Please identify yourself when asking question/comment • Written Questions • Participants using ReadyTalk have the ability to submit written questions during the webinar • Please feel free to use this feature to ask questions directly to the presenter

3. ADAP Advocacy WebinarJanuary 20, 2010

4. Agenda • Advocacy 101 • Building an Influential Coalition and Grassroots Infrastructure • Explaining the Cost-effectiveness of ADAP • Toolkit • State Examples • Resources

5. Advocacy 101

6. What is Advocacy? • Advocacy is targeted support directed at changing the policies, positions or programs at any type of institution and encompasses a broad range of activities • Advocacy can be as simple as educating someone on a certain issue • Advocacy is one of many strategies aimed at drawing attention to an issue and influencing decision-makers to work toward a shared goal • Effective advocacy can: • Educate leaders, policy makers or those who carry out policies • Reform existing policies, laws and budgets • Develop new programs • Create more open dialogue with decision-makers

7. Advocacy vs. Lobbying • Advocacy is the promotion of an idea, lobbying is the act of asking an elected official to take a particular position on a specific piece of legislation or rule • Advocacy can often be thought of as education with a targeted point, but it does not need to include a direct targeted ask • State employees may be prohibited from certain or all aspects of direct advocacy • There are many ways to advocate for state HIV/AIDS programs

8. Removing State Barriers • State rules must be followed, but many ADAP employees have found that they can find ways to advocate on behalf of their program • Restrictions commonly placed on state employees include: • Prohibition on direct contact with elected officials by any state employee • Prohibition on direct contact with elected officials by anyone other than the HIV/AIDS Director/Administrator • Constraints placed on methods of advocacy • If you have limitations on your ability to advocate for your program try to work with industry and community partners • The simple activity of providing partners with fact sheets or other specific information about the programs is an important aspect of advocacy. • Partners can use in their direct lobbying activities with legislators and others

9. Steps to Make Change Happen • Define the issue • Clearly articulate the issue or problem and the necessary solution • Take time to collect information about the issue • Gather relevant facts about current challenges and needs of your ADAP • Create simple fact sheets and informational pieces about your program its needs • Evaluate and gather resources • You are not alone in advocating for your program • Use the resources around you to get message to the public and to legislators • Grassroots organizations, community members, clients and other interested individuals can all be advocates • Use the media (newspapers, radio, television, and the Internet) to get the problem and the solution heard widely

10. Steps to Make Change Happen (continued) • Make a plan • Plan out your advocacy approach • Remember to clearly state: • Goals • Tasks and timeline • Partners • Resources • Take time to think through your approach • Consider: • What is the issue/problem? • What policy do you want to change? • Who are the decision-makers • Who do you get them to change the policy? • Who agrees with you and opposes you? • What are the action steps? • What resources are needed?

11. Building an Influential Coalition and Grassroots Infrastructure

12. Benefits of Coalition Work • Coalitions allow for creative strategies to address the current political and economic challenges • Forming coalitions allows organizations and individuals to share the workload and pool their expertise and resources • Cast a wide net to find interested coalition partners • A diverse coalition can tap into the strengths, resources, and skills of the many communities affected by HIV/AIDS • Elected representatives pay attention when they know they are being held accountable by several organizations and individuals

13. The Role of Public Health Officials in Coalitions • Public health officials, including ADAP Coordinators, can: • Identify and connect key organizations and individuals in the community who would make good coalition partners • Share vital data and policy information that coalitions can use to develop their advocacy agenda • Share information about the coalition’s work and encourage other individuals and organizations to get involved • Utilize existing community planning bodies and other advisory groups to gain new coalition members • Work with public officials outside of the HIV field to identify advocates in other disease/health areas to broaden coalition

14. Types of Coalitions • Advocacy coalitions take a variety of forms, with each having strengths and challenges. Determining the best model for a coalition requires answering a series of questions: • Who will be in the coalition? • How will the coalition be funded? • How will the coalition be staffed? • Will the coalition be ongoing or time-limited? • How will the coalition be structured?

15. Building a Successful Coalition • The success of a coalition depends on a variety of factors. Some of the elements that can help ensure a healthy and productive coalition include: • Organizational support • Geographical representation • Diverse membership • Variety of skills • Regular communication • Sharing the workload and credit • Agreed upon reasonable goals • Celebrating success

16. Role of Coalition Members • Every member can have a role that adds to the coalition’s success. Each role is equally valuable and an integral part of keeping the coalition viable and functional. Some of the roles found in a coalition include: • Leaders • Organizers • Policy experts • Political strategists • Communication experts • Grassroots communication experts • Grassroots advocates • Worker bees!

17. Coalition Activities • Coalition activities are designed to educate elected representatives and administrative officials about legislative and funding issues, and include: • Policy research and analysis • Proposing legislation and/or funding requests • Creating fact sheets and talking points on legislative issues • Writing and disseminating Action Alerts • Organizing call-in day • Circulating sign-on letters • Organizing lobby days, rallies, and legislative briefings • Providing public testimony at a legislative committee hearing • Designing media campaigns, including issuing press releases, holding press conferences, and writing letters to the editor and op-ed pieces

18. Establishing a Grassroots Network • Organize a grassroots advocacy network to ensure that people who are the most affected by an issue are communicating directly with their elected representatives • Grassroots networks should be separate from a policy coalition and focus exclusively on designing grassroots strategies. Activities for grassroots should be targeted and results oriented, such as: • Letter writing campaigns • Calls to legislators • Organizing district visits

19. Explaining the Cost-effectiveness of ADAP

20. Cost-effectiveness of ADAP • Financial forecasting can be used in advocacy efforts: • Determine what funding would be necessary to eliminate current cost-containment measures • Determine what funding would be necessary to expand the current program • Use general cost effectiveness of treatment arguments to rationalize the ADAP program in non-dollar terms • Cost-efficiency and effectiveness arguments for ADAPs nationwide is a good proxy for the cost-effectiveness of the program in your state • State-specific information is available in the National ADAP Monitoring Project Annual Report, released each spring, and can be used to compare programs of similar size, purchasing mechanism, and formulary composition • Please see cost-effectiveness factsheets in the Toolkit

21. Toolkit

22. Tools Included in ADAP Advocacy Guide • Included in the toolkit are examples of several of the documents referenced in this guide. These examples can be used as either a model for crafting your own documents (samples) or as a framework for inputting your information (templates). • Letter to a legislator • Legislative alert • Press release • Fact sheet • Testimony at a public hearing • Letter to the editor • Table of State Legislature Websites • Additional advocacy resources

23. State Examples

24. Iowa • What prompted your ADAP advocacy efforts? • In May 2004, Iowa closed the program to new enrollees and implemented a waiting list. Demand for the program had outpaced resources. After receiving our grant award in April 2004, it was clear that we wouldn’t make it through the federal fiscal year at the current rate of growth. At this point, Iowa did not receive state funding, nor were we drawing down ADAP supplemental due to the match requirement. • While the program was closed, we continued to receive 5-10 new applicants each month. • Our ADAP Crisis corresponded with the national crisis. • How did you engage your community to work with your ADAP? • Through the support of key partners in the pharmaceutical industry, local advocacy experts, and some community based organizations an educational “Day on the Hill” was planned for state legislators. It was scheduled in conjunction with the Community Planning Group meeting to help with attendance. • Community Planning Group was a key mechanism utilized to educate stakeholders on the issues affecting ADAP. Education of stakeholders resulted in a passionate group of advocates motivated to share their stories.

25. Iowa (continued) • What would you say was responsible for successfully getting funding from your state legislature? • The development of an informative, yet concise fact sheet for educational purposes. In 2004, our state legislature really wasn’t aware of the issues facing Iowans living with HIV. • Consistent and frequent messages from various community partners. • Key partnerships with state legislators. • Don’t assume who your allies will or won’t be. Found partnerships in unlikely places. • As a result of this initial advocacy push in 04/05, two important statewide groups formed: CHAIN and PITCH. One is an advocacy group for both HIV and Hepatitis issues and includes members from a variety of interests and disciplines. The other is for HIV positive Iowans. • How is the current economic downturn impacting your current and future advocacy efforts? • Once again, Iowa had to close the program to new enrollees in July 2009 due to increasing demand with inadequate resources. The increase in demand can anecdotally be attributed to the economic downturn as well as new diagnosis and former Iowans “coming home”. • Thanks to the 04/05 crisis, our advocacy network is firmly in place and mechanisms are in motion to advocate for the ADAP program. However, resources seem to be less than five years ago. It seems unlikely that we’ll receive additional resources, though we do have a “champion” who is looking. • Our pharmaceutical partners are less involved than in previous years. Their voice was important because they had firmly established relationships and were at the statehouse every day. 

26. South Carolina • What prompted your ADAP advocacy efforts? • In April 2006, the SC ADAP implemented a waiting list for direct dispensing services due to insufficient financial resources. • During the wait list we continued to receive an average of 60 applications for the program per month. • How did you engage your community to work with your ADAP? • In August 2006, community partners from all over South Carolina (ASOs, CBOs, state legislators, Medical Student Association, consumers) came together to form the SC HIV/AIDS Care Crisis Task Force. • The creation of the Task Force was initiated by the community in direct response to the ADAP waiting list.

27. South Carolina (continued) • What would you say was responsible for successfully getting funding from your state legislature? • Consistent and frequent messages from various community partners. • High-profile media coverage of the SC ADAP waiting list. • Key partnership with state legislator. • How is the current economic downturn impacting your current and future advocacy efforts? • Like most states, SC is in the midst of severe budget cuts with little hope of new funding being allocated for programs. However, the Task Force continues to function to ensure the state legislature knows the issue has not gone away.

28. Resources

29. Resources • For examples of ADAP advocacy documents, please reference the AIDS Drug Assistance Program (ADAP) Advocacy Training Guide: Developing State Grassroots and State Advocacy on the NASTAD website. • If you have questions regarding this TA call, please contact Britten Ginsburg (bginsburg@NASTAD.org) or Ann Lefert (alefert@NASTAD.org). • Please post any additional questions to the ADAP or Part B listservs at: • ADAP@critpath.org • TITLEIICOORDINATORS@critpath.org