elizabeth shepherd m.a. deadra lawson-smith & elizabeth mclendon m.a. a rural state's...

ELIZABETH SHEPHERD M.A.

DEADRA LAWSON-SMITH &

ELIZABETH MCLENDON M.A.

A Rural State's Homegrown Solutions to

Access to Care and Stigma Elimination.

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.

Region 2=108

Region 1=53

Region 3= 224 R

egion4=

141

Region 6 = 51

Region 7= 93

Region 5=72

Region 8= 31-

DHEC Region ADAP Update Numbers

South Carolina ADAP

Previous ADAP Waitlist April 2006Enrolled 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 - $500,0002006 - $800,0002007 - $4,500,0002008 - $5,900,0002009 - $4,600,0002010 - $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 2014SHARP: State Summary. www.taepusa.org

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.


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.


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.


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 on-going 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. VoicesSouth Carolina HIV/AIDS

Council1115 Calhoun Street

Columbia, South Carolina

• 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,

• lack of access to help in small communities,

• managing local small-town “gossip,” • lack of adequate transportation which

impacts access to HIV/AIDS health care.

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

BEAUFORTGREENVILLECHARLESTONORANGEBURG

LEXINGTONRICHLANDSUMTER

P.O.S.I.T.I.V.E VOICESPARTNERS

SOUTH CAROLINA HIV/AIDS COUNCIL

SC HIV/AIDS CARE CRISIS TASK FORCESOUTHERN REACH-(AIDS UNITED)

TIBOTEC THERAPEUTICS

P.O.S.I.T.I.V.E. VOICESACCOMPLISHMENTS

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

EMPOWERING THE ENERGYEMPOWERING THE ENERGYFOCUSING THE FIREFOCUSING THE FIRE

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The Ruby SlippersThe Ruby Slippers

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.”

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The South Carolina HIV/AIDS Care Crisis Task Force

A Brief History

“Yes, we can!” and

“Yes, we have!”

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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.

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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.

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Goals and Objectives 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 Determine annual policy prioritieso monitoring and influencing public policyo develop and implement advocacy planso raise public visibility for HIV/AIDS issues in South Carolinao educate elected and appointed officials, key decision makers, the

general public, and Task Force members about needed HIV/AIDS public policy

o conduct at least an annual legislative action event at the State Capitolo 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.

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The South Carolina HIV/AIDS Care Crisis Task [email protected]

Statewide Participation

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.

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[email protected]

Structural Overview

Membership – currently 305 and growing…o Individualso Groupso Agencies/Organizations

Committeeso Communicationso Consumer Actiono Policy and Researcho Legislative Strategyo Stakeholder Engagement

Administrativeo Chair and Executive Committeeo Advocacy Liaison

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Relationship with key Legislative ally,

SC State Representative Joseph Neal40

“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

HIV/AIDS CouncilState House, Columbia, SC • April 23, 2009

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Saving the Next GenerationStatewide Community Action Town Hall Meeting

with SC Congressman James E. ClyburnColumbia, SC • August 18, 2009

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with SC Congressman James E. Clyburnand the Women of P.O.S.I.T.I.V.E. Voices

Columbia, SC • August 18, 200943


with SC Congressman James E. ClyburnDeadra Lawson-Smith, Coordinator, P.O.S.I.T.I.V.E. Voices

Columbia, SC • August 18, 200944

White House Office of National AIDS Policy SC Town Hall Meeting with Jeffrey S. Crowley, Director

Columbia, SC • October 26, 2009

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White House Office of National AIDS Policy SC Town Hall Meeting with Jeffrey S. Crowley, Director

Columbia, SC • October 26, 200946

White House Office of National AIDS Policy SC/NC Town Hall Meeting with Jeffrey S. Crowley, Director

Washington, NC • October 26, 2009

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International InfluenceCongressional 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 DirectorColumbia, SC • April 27, 201048

Rally to Save ADAP and HIV Prevention in SCState House, Columbia, SC • March 17, 2010

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Task Force Volunteers meeting Senator John Scott Gressette Building, State House, Columbia, SC • March

23, 201050

Honoring Task Force Volunteers National Volunteer Week 2010

by Rep. Joe Neal in House Chamber (then Sen. Hugh Leatherman in Senate Chamber)

State House, Columbia, SC • April 22, 2010

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Legislative HIV/AIDS Update and Country BreakfastRep. Chip Limehouse (R-Charleston)

and Constituent, Virginia King, Low Country AIDS Access

Blatt Building, State House, Columbia, SC • May 13, 2010

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Stephanie Williams’ Memorial Rally for LifeMrs. Ione Dwyer, Sumter City Council

State House, Columbia, SC • May 25, 2010

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Stephanie Williams’ Memorial Rally for LifeElizabeth Shepherd, Advocate


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Stephanie Williams’ Memorial Rally for LifeShirley Brown, Advocate and 17-Year HIV Survivor


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Introduction of National AIDS Policy

Press Conference and ReceptionTask Force Chair, Dr. Bambi Gaddist,

delivers 20 letters from statewide Consumers White House • July 15, 2010

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Task Force’s Strategic Planning Meeting Dorothee Alsentzer, Sr. Clinical Fellow, and colleague

from theHarvard Law School WilmerHale Legal Services Center

Charleston, SC • August 31 & September 1, 2010

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Task Force Monthly MeetingColumbia, SC • December 14, 2010

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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 olds in SC

SC HIV/AIDS Council • Columbia, SC • January 17, 201159

Representative Christopher Hart presenting at USC’s MLK Day of Service

SC HIV/AIDS Council, Columbia, SC • January 17, 2011

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SHARP Report Release and Rally to Restore Funding for ADAP and HIV Prevention

Representative Gilda Cobb-HunterState House, Columbia, SC • February 9, 201161

SHARP Report Release and Rally to Restore Funding for ADAP and

HIV PreventionSC ETV interviewing Representative Bakari Sellers State House Lobby, Columbia, SC • February 9, 2011

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SC ETV Interview at Trinity Episcopal Cathedral

Host of the SHARP Report and Rally ReceptionThe Very Rev. Stephen Bolle, Acting Dean

Dorothee Alsentzer, Sr. Clinical Fellow, Harvard Law School WilmerHale Legal Services Center

Columbia, SC • February 9, 2011

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Rally for a Moral BudgetADAP Banner on top tier of signs on steps

Shamira Jones in lower front left, Nursing Student, Midlands Technical College,

and VolunteerState House, Columbia, SC • March 12, 2011

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“Your Voice Matters” Advocacy Training & “Visit Your Legislator”

with Joey Terrill, Domestic Advocacy Manager, AIDS Healthcare Foundation

Columbia, SC • March 29, 2011

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“Visit Your Legislator”Veronica Brisco, Newly Trained Advocate Still Smiling after distressing incident with her

Representativeand Joey Terrill, Domestic Advocacy Manager, AIDS

Healthcare FoundationState House Lobby • Columbia, SC • March 29, 2011

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Benedict College PLUS Day Advocacy Training

Being “Fired Up” by Ali ShabazzPeer Health Navigator and 28-Year HIV

SurvivorSC HIV/AIDS Council, Columbia, SC • April 2, 2011

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Benedict College PLUS Day Advocacy Training

Researching their LegislatorsSC HIV/AIDS Council, Columbia, SC • April 2, 2011

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Benedict College PLUS Day Advocacy TrainingWriting their Legislators

SC HIV/AIDS Council, Columbia, SC • April 2, 2011

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Debriefing after Visit to Sen. Jake KnottsJulia Craft, RN, and Chris Davis, Retired Firefighter

with Volunteers Chaplain Camille Carpenter and Kojo Danquah-Duah

SC HIV/AIDS Council • Columbia, SC • April 26, 201170

“SC State House and Medicaid Update “Karen Gillespie, Associate Director, State Governmental Affairs

Bristol-Myers Squibbwith Ted Riley, Attorney, and Dr. Bambi Gaddist, Task

Force ChairTask Force Monthly Meeting • Columbia, SC • May 10,

2011

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“Developing Local Advocacy Strategies in Response to National AIDS Strategy”

Patrick Packer, Executive Director, Southern AIDS CoalitionMonthly Task Force Meeting • Columbia, SC • June 14, 2011

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Empowering YouthCrystal Booker at work

Volunteer and Winthrop University Journalism StudentSC HIV/AIDS Council • Columbia, SC • June 22, 201173

Faith Leaders Academywith Metropolitan Interdenominational Church Technical

Assistance Network“Introducing Your Community Resources”

Cameron Brisco, 16-Year-Old Advocate for his mother, Veronica Brisco

Columbia, SC • June 24, 2011

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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.

elizabeth shepherd m.a. deadra lawson-smith & elizabeth mclendon m.a. a rural state's...

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