Florida Statewide Advocacy: Lessons Learned

1. Florida Statewide Advocacy:Lessons Learned • Jesse Fry • jessefry@earthlink.net • Co-Chairman, Florida HIV/AIDS Advocacy Network • Member, AICP Statewide Technical Advisory Committee • Contract Lobbyist • Marketing Consultant

2. Lessons Learned in Florida: When you have a challenge facing you, remind people where we’ve been and what we’ve done … and how we accomplished it. Use the captive audience principle to maximize your attendance numbers. Empower patients to be leaders in the fight against HIV disease, not victims of it. Establish yourself as a credible source of information for policy makers. Cultivate one-to-one relationships with the people who represent you in government.

3. Lessons Learned in Florida: When you have a challenge facing you, remind people where we’ve been and what we’ve done … and how we accomplished it. Use the captive audience principle to maximize your attendance numbers. Empower patients to be leaders in the fight against HIV disease, not victims of it. Establish yourself as a credible source of information for policy makers. Cultivate one-to-one relationships with the people who represent you in government.

4. What advocacy has done for Floridians living with HIV and AIDS: Advocates played a pivotal role in shaping and advising Project AIDS Care (PAC) waiver program Convinced Florida Medicaid (AHCA),Governor, Florida Legislature that state-of-the-art HIV drug resistance testing is vital to care Preserved exemption of HIV drug class from Medicaid Preferred Drug List (PDL) management. Fended off Medicaid capitation rates for AIDS patients’ care and treatment

5. The Legacy of HIV/AIDS Advocacy: Changed the rules for drug discovery, development and approval for life-threatening illnesses Convinced researchers to provide early access to experimental drugs Empowered patient to be leaders in the fight against disease, not victims of it. Defined how to influence scientists, academics, bureaucrats, legislators and presidents without making them enemies. Source: Martin Delaney

6. Lessons Learned in Florida: When you have a challenge facing you, remind people where we’ve been and what we’ve done … and how we accomplished it. Use the captive audience principle to maximize your attendance numbers. Empower patients to be leaders in the fight against HIV disease, not victims of it. Establish yourself as a credible source of information for policy makers. Cultivate one-to-one relationships with the people who represent you in government.

8. Seven Activate U! Advocacy Academies From March 10, 2010 to January 28, 2011 Largest audience: 405 participants! Over 650 participants in total. Two were held during or in place of Ryan White Consortia meetings. One held at an AIDS Service Organization’s regular monthly luncheon. One full-day Activate! U the day before Positive Living 13 on Fort Walton Beach…

9. Positive Living 14Fort Walton Beach, Florida Register at: www.aidsoasis.org Click on “Events” Save the Date: March 11th, 12th and 13th

10. Lessons Learned in Florida: When you have a challenge facing you, remind people where we’ve been and what we’ve done … and how we accomplished it. Use the captive audience principle to maximize your attendance numbers. Empower patients to be leaders in the fight against HIV disease, not victims of it. Establish yourself as a credible source of information for policy makers. Cultivate one-to-one relationships with the people who represent you in government.

11. My favorite of Martin Delaney’s advocacy principles. One I carry around Florida, because it carried me. Empower everyone and your “Alphas” will emerge. Example: Jacksonville Activate! U Homogenized “Action Alert” documents and turn-key email campaigns are great, but highly engaged people will naturally emerge and advocate what they are passionate about.

12. Lessons Learned in Florida: When you have a challenge facing you, remind people where we’ve been and what we’ve done … and how we accomplished it. Use the captive audience principle to maximize your attendance numbers. Empower patients to be leaders in the fight against HIV disease, not victims of it. Establish yourself as a credible source of information for policy makers. Cultivate one-to-one relationships with the people who represent you in government.

13. Advocacy vs. Lobbying ACID TEST To be considered advocacy, and not lobbying, the answer must be “no” to both of the following questions: 1.Does this message ask for specific action, such as a certain vote on a bill or amendment? Bill numbers? SB 3401 for instance… 2.Does this message ask for support of a specific dollar amount, such as a budget increase or appropriation? Dollar signs? $$$

14. Education is not Lobbying Keeping a member informed about waiting lists and the consequences, opportunity costs? Comparing cost of care through AICP or ADAP to Florida Medicaid costs? Facts about HIV drug resistance and dangers of unplanned interruptions in treatment? Presenting cost/benefit analysis? Comparing past budgets to utilization data? Share news clippings with elected officials?

15. Jesse’s Tool of the Day • www.votesmart.org • Look up all of your elected officials • with your 9-digit Zip code. • Contact information, voting records, the works!

16. jessefry@earthlink.net • Co-Chairman, Florida HIV/AIDS Advocacy Network • Member, AICP Statewide Technical Advisory Committee • Contract Lobbyist • Marketing Consultant