SASI at the US Conference on AIDS

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The Southern HIV/AIDS Strategy Initiative is excited to be working with the Southern AIDS Coalition to sponsor two events at this year’s US Conference on AIDS.

PLEASE JOIN US AT THESE EVENTS.

USCA Plenary:   HIV in the US South:

Saturday, September 12th at noon  

Saturday’s  Plenary is devoted to HIV in the US South with Dr. Shanell McGoy, Director of HIV/STD at the TN Department of Health as the Keynote Speaker. Additional speakers: Kathie Hiers (AIDS Alabama), Cedric Sturdevant (My Brother’s Keeper), Monica Johnson (HEROES), Robert Greenwald (TAEP) and Robert Suttle (SERO Project).

Community Village Affinity Session:

Friday, September 11th from 8 to 9 a.m.

Our Affinity Session, Women Living with HIV in the Deep South, will be held in the Community Village, Washington Convention Center, 801 Mt. Vernon Place. Speakers will look behind the statistics related to the HIV epidemic among women in the Deep South to look at factors that lead to the heavy HIV burden among women and will lead an audience discussion of possible solutions.  Speakers include Carolyn McAllaster (Southern HIV/AIDS Strategy Initiative), Sharon Decuir (HAART, Inc. in Baton Rouge), Cynthia Rodgers (The Family Clinic, University of Alabama at Birmingham), Kathie Hiers (AIDS Alabama), and Nic Carlisle (Southern AIDS Coalition).

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Deep South Needs Prevention Resources to Address High Prevalence of Undiagnosed HIV in the Region

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According to the recently released CDC Morbidity and Mortality Weekly Report (MMWR), Prevalence of Diagnosed and Undiagnosed HIV Infection – United States, 2008-2012persons who are unaware of their HIV+ status contribute to nearly one third of ongoing HIV transmission in the United States.[1]  “[The] data demonstrate[s] the need for interventions and public health strategies to reduce the prevalence of undiagnosed HIV infection.” The CDC reports that only 5 jurisdictions met the National HIV/AIDS Strategy objective of increasing the percentage of persons living with HIV who know their serostatus to ≥90% (Colorado, Connecticut, Delaware, Hawaii, and New York).  Only two jurisdictions met this goal for the important target population of MSM.

The data presented by the CDC underscores the need for effective prevention interventions and strategies to reduce the prevalence of undiagnosed HIV infection in the 9 Deep South states targeted by the Southern HIV/AIDS Strategy Initiative (AL, FL, GA, LA, MS, NC, SC, TN, TX). All 9 Deep South states are in the top 25 jurisdictions with the highest rates of persons living with diagnosed and undiagnosed HIV in 2012.  These same Deep South states are also in the top 25 jurisdictions with the highest numbers of persons living with undiagnosed HIV.[2] Focusing on the priority population of men who have sex with men (MSM), all of the Deep South states are also in the top 25 jurisdictions with the highest numbers of MSM with undiagnosed HIV and 8 of the Deep South states are in the top 25 jurisdictions with the highest percentages of MSM living with undiagnosed HIV.[3]

Many of the Deep South states have HIV epidemics that are dispersed outside of the large urban areas currently eligible for direct CBO (Community Based Organization) funding from the CDC.  See SASI’s report, ONE SIZE DOES NOT FIT ALL: What Does High Impact Prevention Funding Mean for Community-Based Organizations in the Deep South? In light of the recently released data from the CDC, we continue to call on the CDC to provide prevention funding that addresses the HIV epidemic in states with more dispersed epidemics, high diagnosis rates, high prevalence of undiagnosed HIV, and high death rates.

Persons aged 13 years living with diagnosed or undiagnosed HIV infection—US, 2012*

(Ranked by Rate per 100,000 population)

*Data from MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 1

Persons aged 13 years living with undiagnosed HIV infection—US, 2012*

(Ranked by number of persons living with undiagnosed HIV infection)

* Data from MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 1

Males 13 years with undiagnosed HIV infection attributed to male-to-male sexual contact—US, 2012 *

(Ranked by number of MSM living with undiagnosed HIV infection)

* Data from MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 2

Males 13 years with undiagnosed HIV infection attributed to male-to-male sexual contact—US, 2012 *

(Ranked by percentage of MSM living with undiagnosed HIV infection)

* Data from MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 2

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[1] MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24

[2] MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 1

[3] MMWR, Centers for Disease Control and Prevention, June 26, 2015/Vo. 64/ No. 24, Table 2

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Seventy-six organizations signed on to SASI’s letter to ONAP calling for increased HIV prevention funding to hard hit areas

May 7, 2015: Today, SASI and 75 national, regional, state and local organizations called on the White House Office of National AIDS Policy (ONAP) to expand the National HIV/AIDS Strategy (NHAS) to add the following critical actions necessary to further reduce HIV infections and to achieve an AIDS-free Generation in the United States:

  • Adopt a more effective and nuanced approach to HIV Prevention by ensuring that:
    • HIV prevention resources are also targeted to rural and suburban, under-served areas with high HIV diagnosis rates, high death rates, and low survival rates, among people diagnosed with HIV or AIDS;
    • HIV prevention efforts in rural and suburban areas are informed by the epidemic profile of each state and tailored geographically by the social and cultural context in each state;
    • HIV prevention efforts targeted to rural and suburban areas support and evaluate capacity to provide HIV prevention and care at the state, local and community-based organization levels.

Read SASI’s letter to ONAP here: Organizational Letter to Douglas Brooks, ONAP re NHAS.

Read SASI’s research report here: CDC CBO Funding Paper-One Size Does Not Fit All

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SASI Releases New Report: ONE SIZE DOES NOT FIT ALL: What Does High Impact Prevention Funding Mean for Community-Based Organizations in the Deep South?

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April 2015: Recent SASI  research, ONE SIZE DOES NOT FIT ALL: What Does High Impact Prevention Funding Mean for Community-Based Organizations in the Deep South?  underscores concerns that the Centers for Disease Control and Prevention’s (CDC’s) High Impact HIV Prevention funding policy creates a “one size fits all” approach that does not adequately address the HIV prevention needs in parts of the country with large rural (non-metropolitan) and suburban (metropolitan areas of 50,000 to 499,000 population) HIV epidemics.

The CDC recently decided to restrict eligibility for direct HIV prevention funding for community-based organizations (CBOs) to those located in designated metropolitan statistical areas (MSAs) removed crucial funding from the Deep South,[1] a region that has experienced disproportionately high HIV diagnosis and death rates and low survival rates.[2]

CDC’s recent funding announcement, PS15-1502, was designed to maximize funding effectiveness by “reach[ing] those areas with the greatest need for HIV prevention services targeting the selected population.”[3] While SASI supports the allocation of significant HIV prevention resources to the large urban areas where the HIV burden is highest, we are concerned about going too far in a one-size-fits-all approach that leaves insufficient funding to address critical prevention needs in other, less urban areas of our country.

When the data is examined on a state level, several Deep South States have a significantly higher percentage of their HIV burden in rural and suburban areas, as shown by the map below. Overwhelmingly, these are areas that are ineligible for direct CBO funding under PS15-1502. According to recent research by the Southern HIV/AIDS Strategy Initiative (SASI), PS15-1502 will have a disparate impact on prevention funding in the Deep South States, creating a funding shortfall that is not sufficiently counterbalanced by increased prevention funding to state health departments.

Percentage of HIV-Positive Individuals in the Deep South States Living Outside an MSA Eligible for CBO HIV Prevention Funding.[1]

Map of % of PLWHA in Deep South States Living outside MSA eligible for CBO funding

If the PS15-1502 MSA eligibility criteria had been applied to previous CBO funding announcements, southern CBOs would have lost out on a total of $3.8 million in 2004 and $2.5 million in 2010 in direct CDC HIV prevention funding.  Because the disease burden in several Deep South States is located outside eligible MSAs, many CBOs that had previously received direct prevention funding nationwide are currently barred from applying for funding under PS15-1502. Although CBOs may also receive some CDC funding indirectly through their state health departments, this funding does not make up for the shortfall created by PS15-1502.

Recent research by SASI and the CDC found that living outside a large urban area at the time of diagnosis significantly predicted greater death rates among persons living with HIV in the Deep South region.[2] Reduced prevention funding for CBOs, groups that are uniquely positioned to reach communities at risk for HIV, will only serve to increase the HIV burden in regions outside the large urban areas where the HIV diagnosis rates and death rates are high.

SASI calls on the CDC to allocate HIV prevention resources to address the HIV epidemic in suburban and rural regions where HIV diagnosis and death rates are high and survival rates after an HIV or AIDS diagnosis are low.

SASI calls on the CDC to provide targeted HIV prevention efforts in rural and suburban areas that are informed by the epidemic profile of each state and tailored geographically by the social and cultural context in each state. 

[1] Deep South is defined in research by the Southern HIV/AIDS Strategy Initiative (SASI) as including nine states: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas.

[2] Susan Reif, Brian Wells Pence, Irene Hall, Xiaohong Hu, Kathryn Wetten & Elena Wilson, HIV Diagnoses, Prevalence and Outcomes in Nine Southern States, 39(6) J. Comm. Health (Dec. 2014). (URL)

[3] Centers for Disease Control & Prevention, FOA PS15-1502, at 39.

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SASI Calls On HRSA to Review Ryan White Supplemental Funding

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February 2015:  SASI calls on HRSA to increase Ryan White Part B Supplemental funding to regions in most need.  Read the full  SASI Call to Action and consider signing on to the AIDS Institute’s Sign on Letter asking HRSA to Review Ryan White Part B Supplemental Grant Process.  Deadline is Tuesday, March 3rd

The nine-state Deep South region targeted by the Southern HIV/AIDS Strategy Initiative (SASI)[1] is one region in need of increased Ryan White Part B Supplemental funding to help address the significant HIV/AIDS burden and high death rates experienced by this region.

Significant HIV Burden faced by Targeted Deep South States:  SASI’s research team, in collaboration with authors from the Centers for Disease Control, recently published new research about the HIV burden and outcomes in nine Deep South states, including death rates and 5-year survival among persons living with HIV and AIDS in the targeted states region.

Researchers found that HIV positive people in the targeted states are dying at faster rates than in any other region of the country.  Twenty-seven percent of persons diagnosed with AIDS in the 9-state region had died within 5 years of diagnosis. In Louisiana, one-third of persons diagnosed with AIDS and 19% of those diagnosed with HIV had died within 5 years.

The death rate among persons living with HIV was higher in the targeted states than in any other US region, even after adjusting for age, sex, transmission category, and area population size. Living outside a large urban area at diagnosis significantly predicted greater death rates among persons living with HIV in the 9-state region, suggesting “..a disconnect between diagnosis and maintenance of HIV care in this region…”

In 2011, 38% of those diagnosed with HIV in the United States lived in the 9-state Deep South region. This region also has the highest number of persons living with HIV of any region in the US. More people diagnosed in this region are black/African American, female and aged 13-24 than in other US regions, and a higher percentage reported heterosexual contact as the transmission category. Living in the rural and suburban areas of the Deep South at the time of diagnosis significantly predicted higher death rates among persons living with HIV in the Deep South region when compared to urban residence. The Deep South Region also has high rates of uninsured compared to the US average.

Identifying effective prevention and care services to address common barriers to care such as geographic access and pervasive stigma is critical to improving HIV outcomes in the Deep South region.

Impact of State Decisions on Medicaid Expansion:  In 2015, adequacy of insurance will become more important than ever to people living with HIV.

  • In states that expand Medicaid, whole new classes of people with HIV will gain coverage, allowing use of Ryan White dollars for other services that identify people with HIV, keep them in care, enable them to live healthy, productive lives, and prevent transmission of HIV.
  • In states that do not expand Medicaid, some of the lowest-income people with HIV will be left out, risking even higher death rates and lower survival rates for HIV positive persons.

Call to Action:  If we are to achieve the goals of the National HIV/AIDS Strategy, federal and state public health officials and policy makers must focus attention and resources on this 9-state region where HIV diagnosis rates are highest, uninsured rates are highest, and more people are living and dying with HIV.  SASI’s research findings give us a deeper understanding of the dire consequences that having an HIV diagnosis in the Deep South has for too many. Without appropriate care, HIV is still deadly.  Increasing Part B funds, placing special emphasis on factors that limit access to health care, and studying the current utilization of funds can help provide needed services for people with HIV in a post-health-reform world.

SASI calls on:

  1. HRSA to re-examine how Ryan White Part B Supplemental funding is being allocated to ensure that funds are given to states where the need is greatest in order to improve health outcomes..
  2. HRSA to take into account when distributing Ryan White Part B Supplemental funds the demonstrated need as evidenced by high HIV incidence and prevalence, high uninsured rates, high death rates and low 5-year survival rates among persons living with HIV in the targeted Southern region.

[1] AL, FL, GA, LA, MS, NC, SC, TN, TX.

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#RyanWhiteWorks. Ryan White. Real Lives. Meet Jean B.

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Florida ranks 2nd in the nation in deaths among adults with an HIV diagnosis. The State of Florida has not yet expanded Medicaid under the Affordable Care Act.  As a result, an estimated 16,500 of the lowest-income people with HIV have been left out of coverage available in other states.  They must rely on Ryan White for crucial medical care and supportive services.  In 2011, an estimated 53,337 Floridians received services through the Ryan White program.

Jean B.
Gainesville, FL

When I was diagnosed with HIV, I was overwhelmed. I live in a rural area where the stigma meant I was going to have to find a provider outside of my community for my safety. I didn’t know where to start. I can tell you that the case management aspect of the program has played a huge role in my health. The Ryan White case manager was there to guide me through the paperwork and the healthcare and Medicaid systems so I’d get the care I needed with a provider outside my rural county.

I drive nearly 120 miles round trip to get to my doctor’s appointments. The gas cards provided to me through the Ryan White program have helped tremendously, reducing the financial struggle for my husband and me.

Since being diagnosed and in Ryan White care, I have had access to critical immunizations that until recently
were not covered through Medicaid. These immunizations reduce my chances of hospitalization or other complications due to my positive status.

I can’t imagine what sort of services would fall through the cracks if the Ryan White program were to no longer exist. Losing access to dental and mental health services for positive individuals would be dire. I know that many of my peers depend on these services as part of their holistic care. Ryan White services are critical to my health, and to the health of thousands of other people living with HIV in the state of Florida.

Read other stories of people impacted by Ryan White Care Act.

Take action now!

Co-sponsors: AIDS United, Southern AIDS Strategy Initiative, Southern AIDS Coalition, Center for Health Law and Policy Innovation at Harvard Law School, HIVHealthReform.org, HIV Prevention Justice Alliance, and the AIDS Foundation of Chicago.

This campaign has been made possible by the generous support of the Elton John AIDS Foundation.

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#RyanWhiteWorks. Ryan White. Real Lives: Meet Edwin Brandon from Tennessee

Edwin Brandon photo

Meet Edwin Brandon

“It’s not just me and my doctor involved with my care, but also Ryan White and my support system. It’s like a puzzle — when all those pieces are put together, I can stay alive and be a productive member of society.”

In 2011, an estimated 12,336 Tennessee residents received services through Ryan White. Edwin Brandon is one of those Tennesseans. He considers himself a long-term survivor, having lived with HIV for 31 years. Living 140 miles round-trip from his primary care physician, Edwin relies on the Ryan White transportation assistance to get him to the life-saving care he needs.

Read Edwin’s full story.

Read other stories of people impacted by Ryan White Care Act.

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#Ryan White Works. Ryan White. Real Lives. Meet Robin J. of Charlotte, NC

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Ryan White. Real Lives – Stories on the real impact of the Ryan White Care Act

Ryan White. Real Lives. is a national campaign presenting narratives on the importance of the Ryan White Care Act among communities impacted by HIV, particularly states in the Deep South that have not expanded Medicaid. The stories provide personal perspective on the need for the continuance of the Ryan White Care Act as a key policy critical to the domestic HIV response.

Meet Robin J.

“Ryan White saved my life, and I thank God for the program. I don’t cry anymore, and I do want to live again. I don’t know what else I would do if there wasn’t the Ryan White Program.”

In 2011, an estimated 14,731 North Carolinians received services through the Ryan White program. Charlotte resident Robin J. is one of those North Carolinians. Robin was diagnosed with HIV during a routine check-up three years ago. After a struggle with depression, she praises the Ryan White Program for allowing her to get the help she needed and keeping her on her feet.

Read Robin’s full story.

Read other stories of people impacted by Ryan White Care Act.

We invite you to read and share Robin’s story and:

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RYAN WHITE. REAL LIVES. #RYANWHITEWORKS

#RyanWhiteWorks logosRyan White. Real Lives. is a national campaign presenting narratives on the importance of the Ryan White Care Act among communities impacted by HIV, particularly states in the Deep South that have not expanded Medicaid. The stories provide personal perspective on the need for the continuance of the Ryan White Care Act as a key policy critical to the domestic HIV response.

Meet Angela

“I have no insurance at all, and I wouldn’t be able to get anything without Ryan White. This is my life—y’all tell Congress that we need this! Or maybe I will go to Washington and tell them myself!”

An estimated 1,900 lowest-income HIV+ residents of Alabama must rely on Ryan White funding for crucial medical care services. After being diagnosed with HIV at 49-years-old, outspoken Alabama resident Angela discusses how the Ryan White Program helped her to find a support network and afford her medication.

Read Angela’s full story.

Read other stories of people impacted by Ryan White Care Act.

We invite you to read and share Angela’s story and:

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RYAN WHITE. REAL LIVES. #RYANWHITEWORKS

Meet Andrew Ballard and Take Action!  

Alabamians are being diagnosed with HIV#RyanWhiteWorks logos at the 13th highest rate in the nation. The State of Alabama has not yet expanded Medicaid under the Affordable Care Act.  As a result, an estimated 1,900 of the lowest-income HIV+ residents of Alabama have been left out of coverage available in other states. They must rely on Ryan White funding for crucial medical care and other supportive services. In 2011, an estimated 7,133 Alabamians received services through the Ryan White program.

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