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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RYAN WHITE. REAL LIVES. #RYANWHITEWORKS

#RyanWhiteWorks logosMeet Tony Franco and Take Action!

Tony Franco

North Carolina ranks 8th in the nation in deaths among adults with an HIV diagnosis. The State of North Carolina has not yet expanded Medicaid under the Affordable Care Act. As a result, an estimated 4,100 of the lowest-income HIV+ residents of North Carolina 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 14,731 North Carolinians received services through the Ryan White program.

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RYAN WHITE. REAL LIVES. #RYANWHITEWORKS

#RyanWhiteWorks logos

Meet Alicia Diggs and Take Action!   Ryan White. Real Lives. Meet Alicia Diggs

North Carolina ranks 8th in the nation in deaths among adults with an HIV diagnosis. The State of North Carolina has not yet expanded Medicaid under the Affordable Care Act. As a result, an estimated 4,100 of the lowest-income HIV+ residents of North Carolina 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 14,731 North Carolinians received services through the Ryan White program.

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SASI Research Team and CDC Publish New Findings about the HIV burden and Deaths in 9 Deep South States

December, 2014: SASI research team collaborates with the Centers for Disease Control to publish new article in the Journal of Community Health: HIV Diagnoses, Prevalence and Outcomes in Nine Southern States , Reif, Pence, Hall, Hu, Whetten & Wilson, Journal of Community Health, 19 December 2014, DOI: 10.1007/s10900-014-9979-7.

SASI researchers have previously documented the high burden of HIV in SASI’s targeted deep south states: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas.  In 2011, 38% of those diagnosed with HIV in the United States were in the targeted states region; the targeted state region also had the highest number of persons living with HIV of any region in the US.

In this article, researchers analyze the characteristics of people diagnosed with HIV in the targeted states.  They also examine 5-year HIV and AIDS survival and deaths among persons living with HIV.

Key Demographic Findings:

  • More people diagnosed with HIV and living with HIV in the targeted states are black/African American, female and aged 13-24 than in any US region.
  • More than a quarter of persons diagnosed with and living with HIV in the targeted states region live outside of urban areas (population 500,000 or greater)highest of any US region.
  • As a region, the targeted states had a higher percentage of HIV transmissions attributed to heterosexual contact and a lower percentage due to injection drug use of any US region.
  • The targeted states region has a higher percentage of both males and females living with HIV with heterosexual contact as the reported transmission category than any US region.

Five-year Survival among persons diagnosed with HIV and AIDS:

  • Overall, 5-year survival among persons diagnosed with HIV or AIDS was lower in the targeted state region than in any other US region.
  • 15% of persons diagnosed with HIV in the region had died within 5 years of diagnosis.
  • 27% of persons diagnosed with AIDS in the region had died within 5 years of diagnosis.
  • In the region, Louisiana had the lowest survival rates after a diagnosis of HIV or AIDS, followed by Mississippi.
  • In Louisiana, 19% of persons diagnosed with HIV had died within 5 years and one-third of persons diagnosed with AIDS had died within 5 years.
  • 5-year survival after a diagnosis with HIV or AIDS was lower in the rural and suburban areas of the region than in the urban areas.
  • 29% of females diagnosed with AIDS and 26% of males in the targeted states had died within 5 years of diagnosis.
  • Blacks had the lowest 5-year HIV and AIDS survival of any race/ethnicity in the region.

Deaths Among Persons Living with HIV (rate of deaths among 1,000 PLWH in 2010):

  • 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).
  • Blacks had a higher death rate among persons living with HIV in the region than whites.
  • Women had a higher death rate among persons living with HIV in the region than males.
  • Suburban and rural residence at diagnosis significantly predicted greater death rates among persons living with HIV in the region compared to urban residence at diagnosis.
  • Louisiana had the highest death rate among persons living with HIV followed by Alabama, South Carolina and Florida.

Connections and Recommendations:

  • Characteristics of persons diagnosed with HIV in the targeted states differ from the US overall.
  • “These differences are crucial to consider, as are other factors prominent in the targeted states including poverty and stigma, when creating strategies to address HIV in this region.”
  • Higher death rates among persons living with HIV in the targeted states
  • “…contributing factors likely include characteristics of the targeted states such as lower levels of income, education, and insurance coverage and higher levels of HIV stigma and racism.”
  • “An additional contributing factor may be the social class system unique to the US South that has traditionally allowed for little social mobility, along with marginalization of, and discrimination against certain groups and often resulting in distrust of systems of care among those in a lower social strata.”
  • Additional research is needed to better determine and understand the factors that influence the higher death rate among persons living with HIV in the targeted states and to identify effective mechanisms to address known barriers including HIV stigma.”
  • The targeted states with the most concerning mortality statistics, particularly Louisiana, may especially be in need of focused attention on addressing the factors contributing to these concerning statistics.” 
  • Higher death rates in the suburban and rural areas
  • “Identifying effective ways to structure prevention and care services so that they address common barriers to care such as accessibility and pervasive stigma will be critical to improving HIV outcomes in rural and suburban areas of the targeted states.”
  • “suggests a disconnect between diagnosis and maintenance of HIV care in this region—particularly in non-urban areas.”
  • Higher diagnosis rates among youth
  • Could be attributed, in part, to: lack of education about HIV transmission; less gravity placed on HIV infection due to improvements in available drug regimens.
  • “Development and implementation of effective prevention and treatment strategies for the younger population will be critical to stemming HIV transmission in the targeted Southern states.”

If we are to achieve the goals of the National HIV/AIDS Strategy, federal and state public health officials and policy makers must direct a laser focus on the deep south region of the US where HIV diagnosis rates are highest and more people are living and dying with HIV.  This article gives us a deeper understanding of the characteristics of those most affected by HIV in our region and documents the dire consequences that having an HIV diagnosis in the deep south has for too many in our region.

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Second SASI Infrastructure Study released: Columbia, South Carolina

November, 2014: HIV Infrastructure Study: Columbia, SC Susan S. Reif, Elena Wilson, & Carolyn McAllaster.

The latest SASI Infrastructure Study, HIV Infrastructure Study: Columbia, SC was released at the annual South Carolina HIV/STD and Viral Hepatitis Conference in Columbia, SC.

Columbia is the largest city and the capital of South Carolina.

According to the Report  and despite the fact that South Carolina has a robust AIDS Drug Assistance Program that pays for medications for uninsured HIV+ persons earning up to 300% of the federal poverty level AND reimburses for insurance premiums, copays, and deductibles for insured HIV+ persons earning up to 550% of the federal poverty level,

  •  36% of persons living with HIV/AIDS in South Carolina were  not in care. (2013 HIV Epidemiological Profile of South Carolina)
  • Columbia had the 10th highest death rates for HIV+ men and women in the United States in 2011.
  • In 2011, Columbia ranked 7th in the country in HIV diagnoses among 13-24 year old males.

The Report identifies the following as some of the barriers to HIV Care & Prevention in Columbia:

  • Lack of transportation
  • Pervasive Stigma
  • Few trained HIV medical providers in the more remotes areas of the Columbia Metropolitan Area
  • Lack of political will
  • Inadequate funding for prevention.

Some suggested strategies identified in the Report for addressing the HIV epidemic in Columbia include:

  • Establishment of a telemedicine program to address lack of transportation and medical care in more remote areas;
  • Co-location of HIV care with other services to combat stigma;’
  • Increased educational efforts for PLWHA, health care professionals, churches, and community to address stigma.
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New SASI Report: HIV Infrastructure Study: Baton Rouge

September 18, 2014: SASI HIV Infrastructure Study: Baton Rouge, Susan S. Reif, Elena Wilson, Carolyn McAllaster, & Casteel Scherger.

SASI researcher, Kristen Sullivan, and SASI Steering Committee member, Sharon Decuir (of Baton Rouge, LA) released and discussed the SASI HIV Infrastructure Study: Baton Rouge at the SPEAK UP! National Summit for Women Living with HIV in Ft. Walton Beach, Florida.

According to the Report:

  • Baton Rouge had the highest AIDS diagnosis rate of any US metropolitan area in 2011;
  • Baton Rouge had the highest HIV diagnosis rate among females overall of any US metropolitan area in 2010;
  • 34.5% of new diagnoses occurred among women in Baton Rouge in 2010;
  • Only 70% of those diagnosed with AIDS in Baton Rouge survived for 3 years after diagnosis in the years 2002-2006.

Despite community strengths that include generally available HIV medical care, committed HIV advocates and service providers, new funding for programs focused on the epidemic among people of color, and the use of Ryan White funds to purchase insurance for PLWHA through the Affordable Care Act, significant barriers to prevention and care remain:

  • Pervasive stigma and discrimination that drives the epidemic into the shadows and leads to reluctance for HIV testing, prevention and treatment;
  • Lack of state prevention funding accompanied by the lack of comprehensive and highly visible prevention efforts;
  • Lack of tranportation options;
  • Limited mental health and substance abuse treatment options;
  • Lack of affordable housing.

The Report identifies the following strategies needed to address the epidemic in Baton Rouge: Additional resources for prevention and comprehensive prevention efforts that raise the visibility of the disease and address stigma as well as greater interagency collaboration, consumer participation in prevention and care planning, and greater resources for HIV case management, transportation, mental health, housing, and legal services.

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State decisions not to Expand Medicaid have a Significant Impact on the Deep South.

The White House Council of Economic Advisers has released a report, Missed Opportunities: The Consequences of State Decisions not to Expand Medicaid, analyzing several consequences of States’ decisions not to expand Medicaid. None of the nine deep south states (AL, GA, FL, LA, MS, NC, SC, TN, TX) targeted by the Southern HIV/AIDS Strategy Initiative (SASI) have expanded Medicaid despite having the highest rates of new HIV and AIDS diagnoses and the highest HIV case related fatality rates in the country.  See:  HIV/AIDS in the Southern US: Trends from 2008-2011 Show a Consistent Disproportionate Epidemic

If all states expanded Medicaid, the Report finds that people would have improved access to care, better health outcomes, and greater financial security.  States would receive the economic benefits of addtional federal funds, more job creation and greater overall economic activity.

Impact on 9 deep south states:  According to the White House report, if the nine deep south states expanded Medicaid, by 2016:

  • More than $65 billion in increased Federal spending would come to the deep south states alone;
  • Four million additional people in the deep south states would have insurance coverage;
  • More than 153,000 women would get mammograms and more than 245,000 women would get pap smears in a 12-month period;
  • Deep south residents would have more than 10 million additional physician visits each year;
  • More than 950,000 additional deep south residents would have a regular doctor; and
  • Almost 180,000 fewer people in the deep south would face catastrophic medical costs in a typical year.

The White House report provides further compelling evidence that State decisions not to expand Medicaid are significant contributors to the widening disparities in health care access, health care outcomes, and financial security faced by those in the deep south and other non-Medicaid expansion states.

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White House Meeting on HIV in the Southern United States

On June 18, 2014, the White House Office of National AIDS Policy, under the leadership of new Director, Douglas M. Brooks, MSW, held its first ever meeting focused on HIV in the Southern United States.  Southerners living with HIV, their advocacy partners, and representatives from several federal agencies gathered at the White House Executive Office Building to hear about the regional challenges the South faces in its fight against HIV and to ask questions.  Douglas Brooks, who is living with HIV himself and who grew up in Georgia, kicked off the meeting by letting participants know that one of his top priorities  is assuring that resources follow the epidemic.

White House Meeting on HIV in the Southern United States Agenda

The South has Poorer Health Outcomes: The HIV death rates are striking in the South. Amy Lansky, with the Centers for Disease Control, highlighted the facts that the Southern region has the highest HIV case fatality rates of any US region and the lowest 3-year HIV survival rates. Case fatality rates in many southern states were twice as great as those in other states. Previous research has documented that 8 of the 10 states with the highest HIV case fatality rates in the US were in SASI’s targeted 9-state region.

Voices of People Living with HIV: Moderated by Joseph Interrante, CEO of Nashville Cares and SASI Steering Committee member.  One panelist talked about the pervasive stigma that prevents positive people from seeking care.  She talked about those who struggle to come out of the HIV closet in the rural South and the layered stigma based on race, sexual orientation and HIV status. Venton Jones, of the National Black Justice Coalition, speaking on the same Voices of People Living with HIV panel, called on policy makers to align resources and research to the populations at risk and highlighted the need to train positive leadership–particularly among young African-American men who have sex with men. 

Challenges: Throughout the day, panelists raised the challenges faced by the south in HIV Prevention and Care.  A major concern that permeated the questions from the audience is the fear that the failure of most Southern States to expand Medicaid will result in ever increasing health disparities between Medicaid expansion and non-expansion states.  Jennifer Kates of the Kaiser Family Foundation illustrated how the southern states that are not expanding Medicaid also have higher than average uninsured rates.   Thirty-six percent of PLWHA (people living with HIV/AIDS) live in the 11 Southern States that are not expanding Medicaid. Because 51% of these PLWHA have incomes below 100% of the federal poverty level, they are ineligible for subsidies in the insurance marketplace and therefore fall in the “coverage gap” if they live in a non-Medicaid expansion state.

Jennifer Kates presentation-Regional Challenges and Opportunities

We also discussed challenges raised by the more rural and mid-sized city nature of the Southern Epidemic including pervasive stigma, the lack of an adequate network of medical providers and the lack of adequate transportation and housing resources.

Megan McLemore of Human Rights Watch urged policy makers to develop comprehensive services for injection drug users and other vulnerable populations that include safe non-judgmental spaces, health and harm reduction information, testing for HIV and Hepatitis C and linkage to care services.  Injection drug use is a significant contributor to both new HIV infection rates and death rates in several Southern states, especially Louisiana, Florida, and Georgia.

Federal Efforts: Federal policy makers across government were in attendance and listening for the entire session.  When it was their turn to speak, they highlighted on-going efforts and commitments to address funding inequities, to initiate innovative programs and to partner with community based organizations throughout the South. The Center for Disease Control is in the midst of five-year plan to re-align funding to align with the number of persons living with HIV/AIDS, for example.  The Department of Housing and Urban Development has proposed legislation that would modernize the funding formula for the distribution of Housing Opportunities for Persons with AIDS (HOPWA) funds to also count living HIV/AIDS cases rather than cumulative AIDS cases. The Department of Justice is working on guidance to states that currently criminalize HIV through their HIV-specific criminal laws, laws that exist in many of our Southern States.

Local Level Impact: In a final panel, skillfully moderated by SASI Steering Committee member Linda Rigsby of the Mississippi Center for Justice, state health department officials and representatives of community-based organizations talked about successful state and local strategies–everything from Tennessee’s program to use Ryan White funds to wrap around marketplace insurance, to Louisiana’s use of data alerts to re-engage people in care to the Whitman-Walker Health Clinic’s successes in retaining people in care.

Linda Rigsby, Mississippi Center for Justice

Moving Forward: The White House Meeting was an energetic and thoughtful exchange among those present and a good first step.  Going forward we must continue to insist on increased resources to provide high-quality HIV care and prevention services to people living in non-Medicaid expansion states.  We cannot meet the goals of the National HIV/AIDS Strategy until we meet the challenge of making sure that everyone has access to high-quality HIV care and prevention services, no matter where they live.

Resources must be targeted.  The Southern epidemic is similar to the US in that it is centered in the urban areas and among young African American MSM (men who have sex with men).  The South differs from the rest of the US, however, in that a higher proportion of the epidemic is in rural and mid-sized cities; among African American Women and, in some Southern States, among injecting drug users. These differences must be recognized when initiatives are funded and funds are distributed.

SASI (Southern HIV/AIDS Strategy Initiative) applauds the prompt steps taken by ONAP Director Douglas Brooks to recognize the Southern epidemic.  The White House Meeting and the Listening Sessions held by ONAP in Jackson, MS; Columbia, SC; and Atlanta, GA are great first steps.  Southern PLWHA and their advocates look forward to continuing to work together with ONAP on next steps.

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Disproportionate Impact of HIV in the South has been Consistent from 2008 – 2011

4/23/2014: SASI Trends Report expanded: HIV/AIDS in the Southern US: Trends from 2008-2011 Show a Consistent Disproportionate Epidemic. The SASI research team has expanded its analysis of the CDC HIV surveillance data over a four year period (2008-2011) and today released their updated report.  SASI’s analysis shows that black/African-American MSM and women remain the hardest hit in the deep south southern region.  The percentage increase of new HIV and AIDS diagnoses that were black/African American MSM was the largest in the South.  In the targeted deep south region, the percentage of new HIV diagnoses among black/African American MSM increased from 26% in 2008 to 29.9% in 2011.

For black/African-American women, the large disparity in rates with those of white women remain in the targeted deep south region.  In 2011 the HIV diagnosis rate for black/African-American women in the targeted region was 42.8/100,000 white the rate for white women was 3.2/100,000.                                                                        

Figure 4–Percent of HIV Diagnoses that are black-African American MSM

3/11/14:  New SASI ReportHIV/AIDS in the Southern US: Trends from 2008-2011 Show a Consistent Dispropotionate Epidemic.  The SASI research team analysis of CDC HIV surveillance data over a four year period (2008-2011) shows that the deep south region (AL, FL, GA, LA, MS, NC, SC, TN, TX) has had the highest HIV and AIDS diagnosis rates as well as the highest HIV and AIDS case fatality rates for each year during this time period. These states also had the highest number of people living with HIV of any region in 2011. In 2011, 40% of new HIV diagnoses were in the targeted deep south states, a region that contains only 28% of the US population.

Figure 1: Regional HIV Diagnosis Rates 2008-2011

Figure 4- Regional AIDS Diagnosis Rates 2008-2011

Figure 1A-Number of HIV Diagnoses by Region and Year

Figure 2A-Number of AIDS Diagnoses by Region and Year

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