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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SASI Article published in the Journal, AIDS Care, highlights continued disproportionate epidemic in the US South

January 17, 2014:  SASI publishes article in AIDS Care: HIV/AIDS in the Southern United States: A Disproportionate Epidemic. Abstract available here.

Using 2011 CDC data, SASI researchers have documented the continuing disproportionate epidemic in the Southern United States and particularly in 9 targeted deep south states, Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and East Texas.

New HIV Diagnosis Rate Map

2011 data re: HIV/AIDS in the Southern Region

  • 49% of new HIV diagnoses and 49% of new AIDS diagnoses in 2011 were located in the South, a region that accounts for only 37% of the US population.
  • The South had the highest HIV diagnosis rate in the US.
  • The South had the highest HIV diagnosis rate and the highest AIDS diagnosis rate in the US in 2011.
  • All 10 metropolitan areas with the highest AIDS diagnosis rates in 2011 were in the South.

2011 data re: HIV/AIDS in the targeted Deep South

 (AL, FL, GA, LA, MS, NC, SC, TN and East Texas)

  • 32% of new HIV diagnoses in 2011 were located in 9 targeted deep south states that account for 22% of the US population.
  • The targeted deep south states, when considered as a geographic region, had the highest HIV diagnosis rate and the highest AIDS diagnosis rate in the US in 2011.
  • Nine of the 10 metropolitan areas with the highest AIDS diagnosis rates in 2011 were in the targeted deep south states. 

Southern States had some of the worst HIV Death rates 

  • The Southern US had significantly lower 3-year HIV survival rates than the US average.*
  • Nine of the 10 states with the highest HIV case fatality rates were in the South; 8 were in targeted deep south states.**

The article highlights social determinants of health that may contribute to the Southern HIV epidemic, including high rates of sexually transmitted diseases, high poverty rates, stigma, the disproportionate impact of HIV on racial minorities in the South, state geography and culture, and the lack of adequate health care financing.

* Hanna, D., Selik, R., Tang, T., & Gange, S. (2011). Disparities among states in hiv-related mortality in persons with hiv infection, 37 U.S. STATES, 2001-2007. AIDS, Early Release.

** Prejean, J., Tang, T., & Hall, I. (2012). HIV diagnoses and prevalence in the southern region of the United States, 2007-2010. Journal of Community Health, Epub.

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South Carolina ends Segregation of HIV+ Inmates

July 10, 2013:  The ACLU announced today that South Carolina, the last state to segregate HIV+ inmates, has agreed to end that practice.

“Ending a long out-dated policy that stigmatized human beings and ignored modern medical information is a tremendous victory for human rights,” said Susan K. Dunn, legal director of the ACLU of South Carolina and SASI Steering Committee member.  “While the segregation of HIV-positive prisoners has long been an unnecessary and ineffective tool for preventing the transmission of HIV, it has had the profound effect of humiliating and isolating prisoners living with the disease.”

Alabama ended a similar segregation policy last year after the policy was held to violate the Americans with Disabilities Act by a United States District Judge in response to ACLU litigation.

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April 24, 2013: Mississippi Bureau Director for HIV/AIDS Care promises that its suspended HOPWA program will be up and running soon

The U.S. Department of Housing & Urban Development (HUD), which grants funds to cities and states for Housing Opportunities for Persons with AIDS (HOPWA),  suspended Mississippi’s program in August 2012 for noncompliance with federal regulations. The suspension abruptly cut off all HOPWA funding for persons living with HIV/AIDS (PLWHA), except in limited amounts for emergency situations, and left pending applications in limbo.  Initially, the Mississippi Department of Health (MSDH) said the suspension would only last until November 2012.  But as of this month, HOPWA applications are still pending and PLWHA are still not receiving the housing aid they need.

In February 2013, the MSDH sent a memo to State HIV Case Managers, AIDS Service Organizations, and Ryan White Grantee Programs explaining that HUD suspended the program for noncompliance with the Short-term Rent, Mortgage, and Utility (STRMU) federal requirements for documenting client eligibility based on housing need and planning for permanent housing.  In addition to giving these reasons, the memo said that the STRMU program was “operating as a continuous rental assistance solution” whereas the HUD regulations intended for STRMU to provide only “short-term interventions.”

Last week, SASI convened a call and invited Dr. James Stewart, interim director of the Mississippi HIV/STD Office, to discuss the status of the HOPWA program with representatives from the community, academia, and non-profit and community-based organizations.  Dr. Stewart stated that MSDH is working with consultants from HUD to reinstate the HOPWA program as soon as practicable.  He  assured the group that his office would release the new HOPWA policies and program details within a few weeks.

The anticipated changes include:

  • Increased communication between MSDH and PLWHA about the HOPWA program;
  • Increased eligibility for STRMU Assistance to 80% of the federal poverty level;
  • Reinstated STRMU program and expanded Tenant-based Rental Assistance (TBRA) program to  address a wider array of housing needs; and
  • Increased collaboration with community partners.

Although the Mississippi HOPWA program clearly needed fixing, many PLWHAs and their advocates felt that the way the program suspension was handled was a disservice to PLWHA.  The program was abruptly suspended with little explanation and without putting a temporary program in place, leaving HOPWA applicants without the resources to meet their housing needs.  Eight months after the initial suspension, applications are still pending and PLWHA are not receiving the aid they need.  However, it is encouraging that Dr. Stewart has now pledged to work with Mississippi housing advocates to find resources for PLWHA whose HOPWA applications are still pending.

If other states are at risk for similar suspensions, the state and HUD must work together to prioritize communication with PLWHA and to create temporary programs so that PLWHA do not needlessly suffer from bureaucratic red tape.

Find out more about STRMU eligibility.

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SASI at AIDS Watch

February 25, 2013: 

SASI (Southern HIV/AIDS Strategy Initiative) was well-represented at AIDS Watch 2013!  We had delegates from all of the Deep South states except Mississippi.  Our advocacy is important in light of the fact that the South has 46% of new HIV diagnosis while representing only 37% of the US population. We held a SASI meeting to talk about how the AIDS Watch policy agenda affects our regions—the refusal of some Southern states to expand Medicaid, the continuing need for Ryan White funding and for all the funding streams identified by AIDS United.  And we added to our legislative agenda the need to change the HOPWA funding formula so that cumulative AIDS cases are no longer in the mix.

SASI delegation meets with White House Director of the Office of National HIV/AIDS Policy, Dr. Grant Colfax

SASI representatives also met with Dr. Grant Colfax, director of the White House Office of National HIV/AIDS Policy and with Dr. Ron Valdiserri, Office of HIV/AIDS and Infectious Disease Policy, to first thank them for the new CDC CAPUS grants focused on the South and to urge the creation of a convening to bring together federal, state, local and community experts to discuss interventions for the HIV crisis in the South.

AIDS Watch is always a powerful experience for me.  Watching the energy that builds as we get our training, meet with our state colleagues to formulate our visit strategy, and then actually making the visits is impressive.  I also love watching first time attendees realize the advocacy power they can have by just telling their stories.  Thanks to TAEP and AIDS United for a well-run AIDS Watch and for bringing us together once again to hold our elected representatives accountable!

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Sequestration’s Impact on PLWHA in the South

“While sequestration will have an impact on all ADAPs…it will have a significant impact on individuals living in the South. As of June 2012, southern states accounted for 33 percent of all ADAP clients served; through sequestration, up to half of the clients that will loss ADAP services reside in southern states.”

Budget sequestration is scheduled for today.  In other words, “a series of automatic, across-the-board cuts to government agencies, totaling $1.2 trillion over 10 years,” and split evenly between defense and domestic discretionary spending, will take effect. (Source)

Overall, budget sequestration will reduce funding for HIV/AIDS programs, “greatly compromise state health departments’ ability to implement programs,” and “erode the nation’s ability to meet the goals of the National HIV/AIDS Strategy (NHAS).”  (Source) Specifically, the National Alliance of State & Territorial AIDS Directors (NASTAD) estimates in The Impact of Budge Sequestration on Federal Funding for State HIV/AIDS and Viral Hepatitis Programs in FY2012 that, if sequestration occurs:

  • ADAP will face an estimated $77 million in cuts, impacting 15,708 clients.
  • Ryan White Part B to state health departments will face cuts of approximately $25 million.
  • Funding for enhanced HIV testing will face approximately $5.4 million in cuts, which will lead to an estimated 412 HIV+ individuals not being identified each fiscal year.
  • Health departments’ HIV surveillance efforts will face approximately $9.7 million in cuts.

Additionally, a new report, The Effect of Budget Sequestration on HIV/AIDS in the United States: Protecting the Human Impact in Fiscal Year 2013, by The Foundation for AIDS Research (amfAR) and the National Minority AIDS Council (NMAC), estimates that:

  • Over 6,760 PLWHA of color will loss access to ADAP (of the approximately 10,130 PLWHA that amfAR and NMAC estimate will loss access to ADAP).
  • Under the Housing Opportunities for Persons with AIDS Program (HOPWA), an estimated 1,360 fewer households will receive permanent housing and 1,780 fewer will receive short-term assistance.  Notably, “1,920 households that include at least one person of color [will] lose HOPWA housing services; 580 households that include at least one Hispanic person [will] lose housing services.”
  • The National Institutes of Health (NIH) will face approximately $163 million in cuts to AIDS research funding. Specifically, “297 AIDS research grants [will] go unfunded, including 32 specifically funding AIDS vaccine research.”
  • CDC-funded state and local prevention efforts will face more than $41.7 million in cuts.

Additionally, the impact of ADAP cuts will be disproportionately felt by the South. NASTAD recently released a one-page fact sheet entitled, The Devastating Impact of Sequestration on ADAP in the South: Sequestration Would Leave Thousands of People without Access to Life-saving Medications.  This fact sheet highlights that, of the approximately 15,000 clients losing access to ADAP, “[a]lmost half of the people that will be disenrolled live in the South, which as of 2010 accounted for 45 percent of all new AIDS diagnoses in the U.S.”  (Source)  Specifically:

  • In Florida, it is anticipated that more than 1,000 clients will be impacted.
  • In North Carolina and Texas, it is anticipated that 301-1,000 clients will be impacted.
  • In Georgia, South Carolina, and Tennessee, it is anticipated that 201-300 clients will be impacted.
  • In Alabama, Louisiana, Kentucky, Oklahoma, and Virginia, it is estimated that 101-200 clients will be impacted.
  • In Arkansas, Mississippi, and West Virginia, it is estimated that less than 100 clients will be impacted.

Many southern states will also not be expanding Medicaid (Source), which would “provide coverage for the many people living with HIV in South who are currently uninsured.”  (Source)  ADAP underfunding will thus have far reaching consequences, including the exacerbation of existing structural barriers to health, as well as an increase in new infections, “particularly in the South and among people of color who are already disproportionately impacted by the HIV epidemic.”  (Source)

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New SASI Report analyzes HOPWA funding formula and concludes that the South Receives Disproportionately Lower HOPWA Funding Than Other Regions

Housing Opportunities for Persons with AIDS (HOPWA) is a HUD program that provides States and cities with approximately $330 million in funding for the housing needs of persons with AIDS (~$300,000,000 for entitlement grants and ~$30,000,000 for competitive grants).  HUD uses a formula based on cumulative AIDS cases to distribute approximately $225 million of the $300 million entitlement grants to cities and states for short-term and long-term housing for over 61,000 households.  Because over half of the individuals included in cumulative AIDS cases are deceased individuals, the distribution is not representative of the current state of the disease.  If HUD used a formula based on the number of persons living with HIV/AIDS instead of a formula based on cumulative AIDS cases, the south would receive 4.1% more funding, or ~$9.23 million.

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“Everyone has role to play in ending HIV epidemic in America.”

February 22, 2012: Today, a few members of SASI, including SASI Director Carolyn McAllaster, attended the National HIV/AIDS Strategy (NHAS) Implementation Assessment meeting in Chapel Hill, North Carolina. At this meeting, Dr. Grant Colfax, Director of the Office of National AIDS Policy (ONAP) and Dr. Ron Valdiserri, Director of the Office of HIV/AIDS and Infectious Disease Policy at the U.S. Department of Health and Human Services (HHS), addressed steps taken to fulfill the goals of the NHAS, as well as next steps and challenges. 

Screen shot 2013-02-21 at 11.29.05 PM

An Update on the National HIV/AIDS Strategy

“Don’t Get Mad, Get Data”: Dr. Grant Colfax emphasized that the NHAS is an evidence-driven strategy that has galvanized the national response to the HIV epidemic. ONAP advises President Obama on domestic HIV issues, while a wide range of federal partners, including the Department of Justice, implement various aspects of the strategy.

The NHAS aims to achieve a more coordinated response to the HIV epidemic among federal agencies, and between federal, state, and local stakeholders. ONAP has been focusing on both (1) areas with high AIDS concentrations and (2) communities most impacted by health disparities, including gay men, MSMs, and people of color. Specifically, MSM and gay men account for 2/3 of all new infections, and in 2010, 44% of new infections were among Black individuals and 21% were among Latinos. Black women account for half of new infections among all women. And, according to the CDC’s Greg Millett, “[a]lthough black MSM account for less than 1% of the U.S. population, they comprise one in four of new infections every year.” [Source]

Screen shot 2013-02-21 at 11.30.23 PM

The 12 Cities Project: Dr. Colfax discussed the 12 Cities Project, which focused on U.S. urban areas with the highest AIDS prevalence, including Atlanta, Dallas, Houston, Miami, and Washington, DC. Highlights of the 12 Cities Project discussed today included communication and collaboration between federal, state, and local entities; an alignment of data collection; and an enhanced focus on outcomes, as opposed to process. Now one of the project’s primary focuses is sustainability. The full 12 Cities Project evaluation can be found here.

12CitiesMapv5

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NHAS Next Steps: A Focus on HIV/AIDS among Minorities; CAPUS Grants

While the 12 Cities Project focused on areas of high AIDS prevalence, the Care and Prevention in the United States (CAPUS) grants, part of the Secretary’s Minority AIDS Initiative, focus on enhancing HIV/AIDS diagnosis, and linkage to and retention in care, among minority communities most impacted by the epidemic. Eight grants were awarded–six to Southern states, including Georgia, Louisiana, Mississippi, North Carolina, Tennessee, and Virginia. Illinois and Missouri also received CAPUS funding.

The HIV/AIDS Treatment Cascade: “We can’t treat our way out of the epidemic, but we must treat to end epidemic.” (Dr. Colfax)

Both Dr. Colfax and Dr. Valdiserri emphasized the HIV/AIDS treatment cascade, which illustrates the stark gaps between those diagnosed with HIV and those who have a suppressed viral load. Overall, it is estimated that 82% of people know their status; 66% of those who know their status are linked to care; 37% of those are retained in care; 33% receive ART; and 25% have undetectable viral loads. [Source]

These numbers become even more stark in reference to communities that are disproportionately impacted by HIV/AIDS.

stagesofcare_race

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stagesofcare_risk

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stagesofcare_gender

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Dr. Valdiserri emphasized that the CAPUS grants are aimed at identifying and implementing local solutions to combat those disadvantageous determinants of health which lead to the disproportionate impact of HIV/AIDS among minority groups.

An Update on the Affordable Care Act (ACA)

Dr. Colfax also discussed ACA, particularly its expansion of coverage, increased prevention services, and the fact that—starting in 2014—no one living with HIV/AIDS can be denied health insurance for having a pre-existing condition. Additionally, HIV/AIDS will be included on the list of chronic conditions for Medicaid health homes, which approximately half of states are implementing.

North Carolina

For more information about what North Carolina is doing to combat HIV/AIDS, and a recap of stakeholder participation in today’s National HIV/AIDS Strategy Implementation Assessment meeting, please check out my  blog post on the Duke AIDS Policy Project website.

Conclusion

Overall, while we have made much progress combatting HIV/AIDS, there is still much work to be done. In the words of Dr. Ron Valdiserri: “Everyone has role to play in ending HIV epidemic in America.”

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