A Rural State's Homegrown Solutions to Access to Care and Stigma Elimination. ELIZABETH SHEPHERD M.A. DEADRA
LAWSON -SMITH &
ELIZABETH MCLENDON M.A.
South Carolina South Carolina ranks number 1 among 50 states in heterosexual HIV transmission. South Carolina ranks 10 among 50 states in AIDS cases. 7th among the largest cities is Columbia
African Americans are nearly 7 times more likely to be impacted with HIV disease and 8 times more likely to be impacted by syphilis than white persons.
There are more than 4,200 women in South Carolina living with HIV/AIDS. • African American women in South Carolina account for an estimated 83% of new HIV infections among all women in the state.. Black women make up 17% of South Carolina’s total population, but they are 26% of all persons living with HIV/AIDS and 29% of all persons diagnosed with HIV-only in the state
As of December 2007, South Carolina ranked among the top states with the highest annual case rates for AIDS (8th), Chlamydia (4th), and Gonorrhea (4th). African Americans comprise 30% of the states population, but 73% of all cases of HIV/AIDS in South Carolina. South Carolina ranks 3rd in the nation for the proportion of Persons Living with AIDS who are African American.
DHEC Region ADAP Update Numbers Region 2=108
Region 3= 224
Region 1=53
Region 5=72 Region 8= 31-
Region 6 = 51 Region 7= 93
South Carolina ADAP Previous ADAP Waitlist April 2006 Enrolled 209 clients in September 2010 w/ 1 time
federal funding of $1.5 mil. ADAP waitlist has approx. doubled since February when it was 389 and last week it was 790
Funding Shortfalls SC ADAP state funding trend 2005 - $500,000 2006 - $800,000 2007 - $4,500,000 2008 - $5,900,000 2009 - $4,600,000 2010 - $1,870,000
Funding Continued SC is potentially facing a budget gap of $10 million in 2011 assuming level federal and state funding from last year.
SC will need an additional $10 million on top of the $1.87 million to remove folks off the waitlist for a period of one year. Funding required = 2,600 * $1000 * 12 = $31.2 million.
Promoting Statewide Waiver South Carolina needs to apply for the state waiver States can apply for the §1115 waiver from Center for Medicaid and Medicare to expand eligibility to individuals living with HIV. Under the §1115 waiver every state dollar would leverage $4 in federal funding for comprehensive care to enable HIV + individuals to remain in the workforce. Most importantly §1115 waiver are identified as priority in the new National HIV/AIDS Strategy Implementation Plan to secure comprehensive healthcare for individuals living with HIV prior to 2014 SHARP: State Summary. www.taepusa.org
End Geographic Disparities
End Geographic disparities in access to transportation. Lack of transportation in SC rural areas is the barrier of all barriers to healthcare 30% of South Carolina is rural transportation SC invests ZERO Dollars for in HIV/AIDS Prevention
Improving the Response Increase testing, linkage to care, and treatment adherence by combating HIV-related stigma. Stigma is a major barrier and challenge in rural South Carolina To address this barrier: Enforce South Carolina law and pursue federal funding and state funds to support comprehensive health education . Since the enactment of the Comprehensive Health Education School Act in 1988 it has been very lax, most middle and high schools do not teach sex education or HIV/AIDS education addressing stigma and medically updated HIV/STD information. SHARP: State Summary. www.taepusa.org
South Carolina Action Plan Objective A.1: By January 2011, the SCHACCTF
will have accurate state materials prepared, based on research, to use for advocacy activities related to ADAP funding. By February 2012, the SCHACCTF members will complete at least two (2) local community interface and three (3) targeted and coordinated state-level advocacy approaches to key committee leaders in the SC Legislature from their geographical areas to petition support for ADAP funding/HIV prevention in every area of the state through the end of this Session.
South Carolina Action Plan Objective A.3: During FY 2011 and 2012,
SCHACCTF will utilize the multi-faceted (e.g, media, community mobilization, social networks, consumers, etc) approach to keep the legislature and the general public aware of Task Force advocacy efforts and the need for ADAP, HIV/AIDS prevention, and Medicaid funding. The S.C.H.A.C.C.T.F. will work to enhance state HIV prevention funding for S.C.
South Carolina Action Plan Goal C: The S.C.H.A.C.C.T.F. will work to maintain or increase Medicaid funding in S.C., which could improve reimbursement rates to retain and recruit HIV and other health care providers expand eligibility for non-disabled, HIV positive individuals, and prepare SC for increased eligibility requirements with Healthcare Reform. C-1 By February 2011, the Task Force will maintain an ongoing priority of identifying new partners willing to join efforts with other stakeholders to improve access to and strengthen Medicaid and willing to incorporate HIV/AIDS advocacy into their agendas.
More Goals for Action Goal D: The S.C.H.A.C.C.T.F. will establish a
national voice for policy & advocacy for South Carolina. Goal E: Establish and link local community advocacy networks within and throughout fourteen (14) P.O.S.I.T.I.V.E. Voices (PV) counties (Richland, Sumter Clarendon, Greenville, Anderson, Pickens, Charleston, Orangeburg, Bamberg, Lexington, Hampton, Colleton, Jasper and Beaufort)
Action
Objective E.2 By February 2012, enhance media
exposure of PV HIV+ Women’s Health Advocacy Network throughout the state of South Carolina.
Next Advocacy Steps South Carolina is a Southern State with a long tradition of Health Disparities in the context of slave labor diseases were not acquired but brought to us by the slave ships on the voyage from Africa to America. South Carolina has made poverty its home not an issue to tackle SC has an idea that class is coupled with poverty, race, and culture SC people have a lack of empathy SC has a serious epidemic of Homophobia
Meet Jimmie
South Carolina Waitlist Man struggles for work and life and still empowers others
Deadra Lawson-Smith, Coordinator P.O.S.I.T.I.V.E. Voices South Carolina HIV/AIDS Council 1115 Calhoun Street Columbia, South Carolina
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South Carolina as number one (1) in the nation in heterosexual transmission (Kaiser Foundation, 2009). • Heterosexual transmission was the most common reported risk for all women and girls with over ninety percent of women contracting HIV from her male partner (South Carolina Department of Health, 2007). Eight (8) out of ten (10) children infected with HIV in South Carolina born to Black mothers (SCDHEC, 2007).
•Censorship of information, poverty, racism, and religious dogma compound efforts to intervene with sexually active women, youth, and higher risk populations that reside in our predominately rural and politically conservative community. •Systemic prejudices and apathy fuel HIV/AIDS stigma and exacerbate barriers within our already oppressed rural counties.
Examples of such barriers include: •
fear of knowing one’s HIV status,
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lack of access to help in small communities,
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managing local small-town “gossip,” lack of adequate transportation which access to HIV/AIDS health care.
impacts
WHAT IS POSITIVE VOICES? OUR NETWORK
HIV+ Women who are ready, willing and able to raise awareness of the impact that HIV/AIDS poses on individuals, communities and society.
WHAT IS POSITIVE VOICES?
Our Role and Responsibilities
• Leadership skills building training • Advocacy Training • Local resource guide development • Public Speaking- (media, community & faith-based events) • Creation of Legislative Advocacy Tool • Production of Public Service Announcements
WHAT IS POSITIVE VOICES? GEOGRAPHICAL REPRESENTATION
BEAUFORT GREENVILLE CHARLESTON ORANGEBURG LEXINGTON RICHLAND SUMTER
P.O.S.I.T.I.V.E VOICES PARTNERS
SOUTH CAROLINA HIV/AIDS COUNCIL SC HIV/AIDS CARE CRISIS TASK FORCE SOUTHERN REACH-(AIDS UNITED) TIBOTEC THERAPEUTICS
P.O.S.I.T.I.V.E. VOICES ACCOMPLISHMENTS Participated in Congressional Town Hall in Collaboration with the SC HIV/AIDS CARE CRISIS TASK FORCE with Congressman James E. Clyburn (August 18, 2009); Participated in SC HIV/AIDS CARE CRISIS TASK FORCE strategic planning meeting (August 19-20, 2009); Participated in community-level focus group with the Harvard Legal 10-26-2009, as part of an up-coming state-wide HIV/AIDS prevention, treatment, and care assessment scheduled for FY 2010.
Participated in Town Hall Discussion in Collaboration with National Office of AIDS Policy with AIDS Czar Jeff Crowley (October 26, 2009);
OTHER RECENT ACCOMPLISHMENTS •Completed Leadership Training(2 classes) •Completed “WE BELIEVE” Advocacy Tool for distribution to SC Legislators and Facilitating Community Level Workshops •PV Women are currently participating in Public Speaking Engagements (faith-based and community) radio television shows, and newspaper articles
OTHER RECENT ACCOMPLISHMENTS •Completed Logo Development •Received additional funding from Southern Reach to further P.O.S.I.T.I.V.E. Voices (National AIDS Fund) •Received funding from LINCC to develop an Empowerment Academy for HIV+ women living in South Carolina and devolpment of Public Service Announcements(Tibotec Therapeutics)
CONTACT US:
803-254-6644
Empowerment
HIV Patient Comes Forward To Help Others HIV and AIDS, there is a stigma around it. Some
people do not like talking about it, but it's an epidemic effecting many right here in the Midlands. http://www.wltx.com/video/default.aspx?bctid=1012176036001
The South Carolina HIV/AIDS Care Crisis Task Force 32
EMPOWERING THE ENERGY FOCUSING THE FIRE
The Ruby Slippers 33
The Story of the Ruby Slippers in L. Frank Baum’s
book, The Wizard of Oz. Their Significance to the HIV-infected and affected, plus the community at large The “All-Powerful Man Behind the Curtain.”
The South Carolina HIV/AIDS Care Crisis Task Force 34 A Brief History
“Yes, we can!” and “Yes, we have!”
The South Carolina HIV/AIDS Care Crisis Task Force 35 Overview
Formed in 2006 in response to South Carolina’s
First ADAP Wait List. Funded primarily by AIDS United (formerly the National AIDS Fund) Inconsistent and unstable funding continues to fuel South Carolina’s SECOND Wait List as the health of citizens unable to access life-saving medications threatens our state’s economic stability.
The South Carolina HIV/AIDS Care Crisis Task Force 36 Mission The South Carolina HIV/AIDS Care Crisis Task
Force is a non-partisan advocacy coalition of individuals, non-profit organizations, and allies from across South Carolina committed to improving the response to the HIV/AIDS epidemic in our state.
The South Carolina HIV/AIDS Care Crisis Task Force
Goals and37Objectives Our principal goal is to advocate for the preservation, expansion and
strengthening of HIV prevention, care, treatment, support and education services in South Carolina, as well as, the advancement of civil and human rights for people affected by HIV/AIDS. We pursue our goals by working on the following objectives: o o o o o
o o
Determine annual policy priorities monitoring and influencing public policy develop and implement advocacy plans raise public visibility for HIV/AIDS issues in South Carolina educate elected and appointed officials, key decision makers, the general public, and Task Force members about needed HIV/AIDS public policy conduct at least an annual legislative action event at the State Capitol develop and implement plans to increase Task Force membership that is diverse in geographic location and perspective and is representative of people living with HIV/AIDS.
The South Carolina HIV/AIDS Care Crisis Task Force
[email protected] Statewide Participation 38
All AIDS Service Organizations (ASOs) statewide
except one regularly participate in Task Force activities. The two major hospital systems with Ryan White Clinics actively participate. Non-Traditional Partners include the SC Hospital Association, SC NAMI, SC Campaign to Prevent Teen Pregnancy, members of Richland County Council and Sumter City and County Councils, Harvard Law School, faith groups, and many others.
Task Force
[email protected]
Structural Overview 39
Membership – currently 305 and growing… o o o
Individuals Groups Agencies/Organizations
Committees o
o o o o
Communications Consumer Action Policy and Research Legislative Strategy Stakeholder Engagement
Administrative o o
Chair and Executive Committee Advocacy Liaison
Relationship with key Legislative ally, SC State Representative Joseph Neal 40
“Show Your Face in this Place” National Volunteer Week Appreciation Event Rep. Joe Neal with members of the Masjid As-Salaam Project F.A.I.T.H. AIDS Care Team and Staff and Volunteers of SC 41 Council HIV/AIDS State House, Columbia, SC • April 23, 2009
Saving the Next Generation Statewide Community Action Town Hall Meeting 42 James E. Clyburn with SC Congressman Columbia, SC • August 18, 2009
Saving the Next Generation Statewide Community Action Town Hall Meeting with SC Congressman James E. Clyburn 43 and the Women of P.O.S.I.T.I.V.E. Voices Columbia, SC • August 18, 2009
Saving the Next Generation Statewide Community Action Town Hall Meeting with SC Congressman James E. Clyburn Deadra Lawson-Smith, Coordinator, P.O.S.I.T.I.V.E. Voices 44 Columbia, SC • August 18, 2009
White House Office of National AIDS Policy SC Town Hall Meeting with Jeffrey S. Crowley, Director Columbia, SC • October 26, 2009 45
White House Office of National AIDS Policy SC Town Hall Meeting with Jeffrey S. Crowley, Director 46 Columbia, SC • October 26, 2009
White House Office of National AIDS Policy SC/NC Town Hall Meeting with Jeffrey S. Crowley, Director Washington, NC • October 26, 2009 47
International Influence Congressional Delegation from Ghana invited by Rep. Joe Neal and Mildred Vanderpuije, Daughter of Mayor of Accra, Niece of Ghanaian President and volunteer at SC HIV/AIDS Council with Dr. Bambi Gaddist, SCHAC’s Executive Director Columbia, SC 48 • April 27, 2010
Rally to Save ADAP and HIV Prevention in SC State House, Columbia, SC • March 17, 2010 49
Task Force Volunteers meeting Senator John Scott Gressette Building, State House, Columbia, SC • March 23, 2010 50
Honoring Task Force Volunteers National Volunteer Week 2010 by Rep. Joe Neal in House51Chamber (then Sen. Hugh Leatherman in Senate Chamber) State House, Columbia, SC • April 22, 2010
Legislative HIV/AIDS Update and Country Breakfast Rep. Chip Limehouse (R-Charleston) 52 and Constituent, Virginia King, Low Country AIDS Access Blatt Building, State House, Columbia, SC • May 13, 2010
Stephanie Williams’ Memorial Rally for Life Mrs. Ione Dwyer, Sumter City Council State House, Columbia, SC • May 25, 2010 53
Stephanie Williams’ Memorial Rally for Life Elizabeth Shepherd, Advocate State House, Columbia, SC • May 25, 2010 54
Stephanie Williams’ Memorial Rally for Life Shirley Brown, Advocate and 17-Year HIV Survivor State House, Columbia, SC • May 25, 2010 55
Introduction of National AIDS Policy Press Conference and Reception Task Force Chair, 56 Dr. Bambi Gaddist, delivers 20 letters from statewide Consumers White House • July 15, 2010
Task Force’s Strategic Planning Meeting Dorothee Alsentzer, Sr. Clinical Fellow, and colleague from the 57 Harvard Law School WilmerHale Legal Services Center Charleston, SC • August 31 & September 1, 2010
Task Force Monthly Meeting Columbia, SC • December 14, 2010 58
University of SC’s MLK Day of Service Students researching their legislators, then handwriting letters to them about their concerns regarding HIV’s impact on 20-29 year olds59 in SC SC HIV/AIDS Council • Columbia, SC • January 17, 2011
Representative Christopher Hart presenting at USC’s MLK Day of Service SC HIV/AIDS Council, Columbia, SC • January 17, 2011 60
SHARP Report Release and Rally to Restore Funding for ADAP and HIV Prevention Representative Gilda Cobb-Hunter 61 State House, Columbia, SC • February 9, 2011
SHARP Report Release and Rally to Restore Funding for ADAP and HIV Prevention 62 SC ETV interviewing Representative Bakari Sellers State House Lobby, Columbia, SC • February 9, 2011
SC ETV Interview at Trinity Episcopal Cathedral Host of the SHARP Report and Rally Reception 63 Bolle, Acting Dean The Very Rev. Stephen Dorothee Alsentzer, Sr. Clinical Fellow, Harvard Law School WilmerHale Legal Services Center
Columbia, SC • February 9, 2011
Rally for a Moral Budget ADAP Banner on top tier of signs on steps Shamira Jones in lower front left, Nursing Student, Midlands Technical College, and 64 Volunteer
State House, Columbia, SC • March 12, 2011
“Your Voice Matters” Advocacy Training & “Visit Your Legislator” with Joey Terrill, Domestic Advocacy Manager, AIDS Healthcare 65 Foundation Columbia, SC • March 29, 2011
“Visit Your Legislator” Veronica Brisco, Newly Trained Advocate Still Smiling after distressing incident with her Representative 66Advocacy Manager, AIDS and Joey Terrill, Domestic Healthcare Foundation State House Lobby • Columbia, SC • March 29, 2011
Benedict College PLUS Day Advocacy Training 67 by Ali Shabazz Being “Fired Up” Peer Health Navigator and 28-Year HIV Survivor
SC HIV/AIDS Council, Columbia, SC • April 2, 2011
Training Researching their Legislators SC HIV/AIDS Council, Columbia, SC • April 2, 2011 68
Benedict College PLUS Day Advocacy Training 69 Writing their Legislators
SC HIV/AIDS Council, Columbia, SC • April 2, 2011
Debriefing after Visit to Sen. Jake Knotts Julia Craft, RN, and Chris Davis, Retired Firefighter with Volunteers Chaplain Camille Carpenter and Kojo DanquahDuah 70 SC HIV/AIDS Council • Columbia, SC • April 26, 2011
“SC State House and Medicaid Update “ Karen Gillespie, Associate Director, State Governmental Affairs Bristolwith Ted Riley,
Myers Squibb Attorney, and 71 Dr. Bambi
Gaddist, Task Force
Chair Task Force Monthly Meeting • Columbia, SC • May 10, 2011
“Developing Local Advocacy Strategies in Response to National AIDS Strategy” Patrick Packer, Executive Director, Southern AIDS Coalition Monthly Task Force Meeting • Columbia, SC • June 14, 2011 72
Empowering Youth Crystal Booker at work Volunteer and Winthrop University Journalism Student SC HIV/AIDS Council • Columbia, SC • June 22, 2011 73
Faith Leaders Academy with Metropolitan Interdenominational Church Technical Assistance Network 74 “Introducing Your Community Resources” Cameron Brisco, 16-Year-Old Advocate for his mother, Veronica Brisco
Columbia, SC • June 24, 2011
In Conclusion What the participants learned was an overview of the South Carolina Care Crisis Task Force, P.O.S.I.T.V.E Voices, Project Faith and what shape the face of our funding has upon the past, present, and future hopes. From the data collected it appears to be a bleak outlook for a newly positive individual in South Carolina with HIV/AIDS.
