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.

#RyanWhiteWorks logosJean-B-photo

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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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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