Combatting HIV/HCV Co-Infection

Earlier this year on March 19th when the ADAP Advocacy Association and Community Access National Network (CANN) announced that they were co-hosting an HIV/HCV Co-Infection ADAP Summit, Bill Arnold said, "CANN has long been recognized for its commitment to promoting patient access to timely care and treatment, and we need to educate consumers, community partners, as well as congressional staff here in Washington, DC about the fastest growing public health epidemic since AIDS: Viral Hepatitis C infection. We have learned many valuable lessons from the HIV/AIDS advocacy community over the last three decades, and CANN will now apply those lessons to ensuring access to effective HCV treatments."

The Summit convened in Las Vegas, NV on April 25th-26th and various stakeholder groups participated in the conversation (only the federal government agencies were not represented because Sequestration restricted agency travel budgets). By all accounts the Summit achieved the objective laid out in Arnold's statement, but unfortunately there are some very sobering statistics behind the need for the event being held in the first place, among them:

• About 25% of people infected with HIV in the U.S. are also infected with HCV.
• About 80% of injection drug users (IDUs) with HIV infection also have HCV.
• HIV/HCV co-infection more than triples the risk for liver disease, liver failure, and liver-related death from HCV.
• Compared with other age groups, a greater proportion (about 1 in 33) of people aged 46–64 years are infected with HCV.
• Chronic HCV is often "silent," and many people can have the infection for 20 to 30 years without having symptoms or feeling sick.
• In the U.S., HCV is twice as prevalent among blacks as among whites.
• New data suggest that sexual transmission of HCV between MSM living with HIV occurs more commonly than previously believed and that sexual transmission can occur undetected between HIV-infected MSM in the absence of injection drug use.[1]

Some public health experts predict that the HIV/AIDS epidemic of the 1980s will pale in comparison to what is likely to happen with the onslaught of new HCV infections. Fortunately, there is a cure for HCV infection.

Several pharmaceutical companies -- including AbbVie, Boehringer-Ingelheim, Bristol-Myers Squibb, Genentech, Gilead Sciences, GlaxoSmithKline, Janssen Therapeutics, Merck, and Vertex -- have numerous new HCV treatments on the market, or in the pipeline, which are much improved over the initial treatments that won approval by the U.S. Food & Drug Administration (FDA). The marvels of modern medicine means that many of these new treatments come with far fewer side effects, better resistance profiles, and in some cases, patients will be on the treatments for less time before achieving optimal results. But at what cost?

According to the Fair Pricing Coalition (FPC), FDA-approved HCV treatments have been extremely expensive, coupled with double digit price increases accompanying some of these drugs since 2011. The FPC has released statements on the cost of the new drugs. The debate over drug pricing will surely continue to ignite emotions once the newer treatments gain FDA approval, and at a much higher cost. In all fairness to the pharmaceutical companies, they have also expanded access...or plan to expand access...to their patient assistance and co-payment assistance programs.

The aforementioned discussion led to what amounted to be the most interesting idea accepted at the Summit: A Pharmaceutical Industry Access to Care Report Card. The "report card" idea was among the recommendations included in the HIV/HCV Co-Infection ADAP Summit Final Report, which was released last week and included both short-term and long-term recommendations.

The short-term recommendations included:

1. Identify national coalitions (i.e., Federal AIDS Policy Partnership, National ADAP Working Group, HCV Coalition for the Cure) and their respective partners, and develop strategic objectives to advance the treatment of HIV/HCV Co-Infection, as well as access to them.
2. Develop universal messaging campaign surrounding access to care under the AIDS Drug Assistance Programs, using “success stories” from co-infected patients. (Editor’s Note: Some of this is already being done by the Campaign to End AIDS).
3. Analyze existing ADAPs covering HCV treatments to determine the pros/cons of recommending other ADAPs covering HCV treatments for co-infected patients. Using a mathematical model, establish guidelines and tiers for co-infected treatment options.
4. Determine feasibility of ADAPs purchasing insurance continuation plans that cover HCV treatments.
5. Ensure that ACA Essential Health Benefits include benchmarks for treatment guidelines, as well as sufficient appeals process.
6. Establish emerging treatment guidelines using existing medical data and consumer experience. It is premature to evaluate “gold standard” for treatment because too many HCV treatments are in the development pipeline, including some already being evaluated by the Food & Drug Administration (FDA).
7. Develop “Fact Sheets” on existing plans for treatment for co-infected patients, including “navigator” information and resources.
8. Expand testing.

The long-term recommendations included:

1. Commission study to identify the potential treatment gaps for HIV/HCV Co-Infection.
2. Develop pharmaceutical industry “Report Card” to evaluate access to timely and appropriate care of people living with HIV/HCV Co-Infection; grading new should take into consideration drug pricing, patient assistance programs, drug rebates (if available), community education/participation initiatives, and accessibility of user-friendly product information (aside from what is legally required by the FDA).
3. Implement “Common Portal” for ADAP.
4. Evaluate adding a new Part under the Ryan White CARE Act, specifically addressing HIV/HCV Co-Infection modeling after the Minority AIDS Initiative.

Whereas the Summit's Final Report is not necessary endorsed by the HIV/HCV Co-Infection ADAP Summit’s sponsors, panelists or participating organizations, it does represent a significant step in ensuring that the effort to combat HCV infections learns from the ongoing struggle against HIV infections.

CLICK HERE to download the HIV/HCV Co-Infection ADAP Summit Final Report.

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[1] Centers for Disease Control & Prevention, HIV and Viral Hepatitis Fact Sheet, November 2011.

Better Linkages to Healthcare Needed for Ex-Offenders

For the past few decades, the direction and focus of corrections policy has been impacted by scholarly research, evidence-based practices, and a focus on improved outcomes in public safety and reduced recidivism.

On the correctional healthcare front, better linkages to community care for ex-offenders to improve continuity of care and personal and public health outcomes have grown considerably.  Costs associated with providing constitutionally mandated healthcare for an increasingly aging inmate population with prevalence rates of chronic diseases often 3 or 4 times the rate seen in the general public reach as high as $10 billion a year.

The national economic slump and sluggish recovery caused state and local governments to adapt to cuts in funding and resources. As a result, elected officials, voters and of course corrections professionals also had to adapt by setting their priorities, identifying efficiencies, improving outcomes and reducing duplication and redundancy of services.  This trend in reductions in correctional budgets has offered a unique opportunity to rethink how we “do” corrections and correctional healthcare.  This has opened a door of opportunity to re-imagine how to better serve inmate populations living with HIV/AIDS.

More than 2.5 million individuals are correctional inmates in the United States.  1 out of 100 adults are behind bars in our country. Over 700,000 prisoners return to the community every year.

Each year, an estimated 1 in 7 persons living with HIV pass through a correctional facility. A reported 20,093 inmates with HIV/AIDS were in custody in state or federal prison at year end 2010. These figures do not include numbers from local/county jail facilities.

On any given day, one-third of America’s inmates are in jails, but nine million individuals pass through jails in any given year. A jail is a facility in which the inmate is held for a shorter period of time, serving a sentence that is usually less than 1 year, or awaiting transfer to other facilities after conviction.  Inmates remain in jails for much shorter stays than in prisons, which results in significantly greater turnover in jail populations.

The costs, both in terms of human suffering and quality of life as well as in impact on strained public resources, is immense:

• Future treatment for the 40,000 people infected with HIV in the United States every year will cost $12.1 billion annually.
• The drug mix that an HIV patient must take can cost between $15,000 to $30,000 a year. The average price is about $20,000.
• Discontinuation of antiretroviral therapy (ART) that is often associated with poor linkages to care for formerly incarcerated individuals returning home to their communities may result in viral rebound, immune decompensation, and clinical progression, resulting in higher costs of care and treatment

These circumstances pose important opportunities and challenges for arranging for HIV testing in jails and linking inmates living with HIV/AIDS with services both while they are incarcerated and after release.

Assisting more individuals in these high-risk jail populations represents an important public health opportunity; learning their HIV status, assuring that they are linked to any needed care, and tracking and reporting outcomes are key factors to success.

Recent demonstration projects funded by the Centers for Disease Control and Prevention (CDC) establish the feasibility of rapid HIV testing in jail settings and its acceptability to inmates and jail administrators.  Models for linking HIV-positive jail inmates to HIV care while incarcerated and upon release to the community have been cropping up all over the country, and important issues for crafting the models have become apparent:

• Linkage procedures vary across different jail systems and jurisdictions;
• Coordination among project partners (e.g., jails, community medical providers) is essential to any success;
• Secure and innovative technology and mechanisms for linkage need to be in place;
• Scopes of services need to be well defined;
• Understanding inmate characteristics, eligibility for public services and holistic needs (not just medical diagnoses, lab results, CD4 count, but also criminogenic needs profile based on validated needs assessment tools);
• Secure, HIPAA-compliant and appropriate information sharing needs have to be well-defined; and 
• Administration and implementation issues need to be addressed

A critically important benefit of focusing on not only linkages to care for HIV/AIDS treatment and services, but the holistic needs of offenders and ex-offender is improved public safety and fewer individuals returning to incarceration.  Closely following evidence-based practices and providing coordinated linkages to appropriate levels and types of care and services has a proven impact on reducing recidivism. The extent to which these principles are followed and treatment integrity is practiced correlates highly with client outcomes as measured by recidivism.

The National Council on Crime and Delinquency in 2006 stated, “Offenders returning to their communities bring with them a host of problems including physical and mental health and substance abuse issues, literacy, few job skills, and minimal work history. These deficits contribute directly to continuing patterns of crime, and unless they are addressed in a comprehensive and consistent fashion-both in the institutions and in the community-parolees will continue to fail.”

Underscoring the nexus of public health, public safety and taxpayer value benefits of improved linkages to care is a vital component of “selling” this approach to elected officials, voters and critical decision makers.

States across the country like Texas, North Carolina, Ohio and California are taking the lead in addressing the decades-long problems they have struggled with in corrections.  Applying evidence-based approaches, connecting offenders with appropriate levels of service and supervision, and being able to monitor, measure and report on outcomes in a timely fashion using secure, cutting edge technology is the future of Corrections.

RECOMMENDATIONS:
Linkage programs need to be tailored to fit the characteristics, culture and policies/practices of particular jails and jurisdictions including their inmate populations. Linkage models vary. Linkage to care may take place within the jail, from jail to prison or, upon release, from jail to the community. Successful strategies for linking HIV-infected inmates to outside services may include:

• Face-to-Face discharge planning (Correctional Healthcare Physicians, Nurses, or dedicated Discharge Case Planners);
• Making every effort to obtain accurate information on release dates;
• Making appointments for releasees with community-based service providers; and
• Meeting releasees at the gate (“warm hand-off”) and transporting them to their initial critical   service appointments.

Some considerations for what types and levels of services should linkage models offer:

• Should programs focus on just the diagnosis and the initial linkage to post-release care and treatment (i.e., making the linkage and getting people to their first appointments)?
• Should programs have the broader goal of making and maintaining the linkage to care and treatment for an extended period after release?
• Should programs be ambitious and comprehensive, addressing a wider range of needs such as housing, employment and family stability?
• Should programs provide full-scale case management or just focus on referrals?

Author:

David Manson

David Manson is Product Manager for Ramsell Correctional Application (RCA) at Ramsell Corporation (www.ramsellcorp.com). RCA is a web based system that solves the problem of coordination of care and benefits for ex-offenders who are in need of any of a number of different paths of assistance to successful reentry into society from state and city/county correctional facilities with the available programs and resources within a community.

David presented at the ADAP Advocacy Association's 2012 and 2013 Annual Conferences in Washington, DC. This year's presentation is available online.

Is it time to Reauthorize the Ryan White CARE Act?

On September 30th, some HIV/AIDS advocates have pontificated that the world will end with respect to supports and services afforded to people living with HIV/AIDS...but that simply isn't true. That is the date when the current Ryan White CARE Act -- which was reauthorized by Congress in 2009 as the "Ryan White HIV/AIDS Treatment Extension Act" -- is set to expire. Maybe federal lawmakers anticipated four years ago that the partisan gridlock would only worsen by today, but interestingly enough the law doesn't include language that is fairly common in reauthorizing legislation: a sunset provision.

What does that mean? In legislative terms, it means that the current law is likely (as in, very likely) to continue under the current law's framework and structure -- including appropriation levels. Putting the hysteria aside, it is nonetheless important for Ryan White stakeholders remain engaged to ensure that the "payor of last resort" safety net that the law provides remains intact, and robust funding accompanies it. Fortunately, coalitions such as the Ryan White Work Group, ADAP Coalition and the National ADAP Working Group (all of which the ADAP Advocacy Association is a member organization), are working to monitor this situation and propose meaningful advocacy strategies.

Of particular interest to most Ryan White stakeholders is the fate of the current law's "Hold Harmless" provision, which was added during a previous reauthorization. The Hold Harmless provision initially continued the previous 95% rate for the first two fiscal years, but increased to 100% of fiscal year 2010 funding for each of the fiscal years 2011 and 2012. For fiscal year 2013, the amount will be 92.5% of the previous fiscal year’s grant. This hold harmless continues to apply to both Part A and Part B grants.[1]

On July 16th, Rep. Frank Pallone (D-NJ) introduced H.R.2699. The legislation would "extend the hold harmless provisions of the Ryan White HIV/AIDS Program pending reauthorization of the overall program." The legislation has no co-sponsors and it also reportedly doesn't have the support of the majority staff on the House Committee on Energy & Commerce, Subcommittee on Health. In other words, Rep. Pallone's legislation probably isn't going anywhere in the Congress.

According to Bill McColl of AIDS United and Co-Chair of the Ryan White Work Group, "We are aware that hold harmless will be a major issue for many people in the HIV community and will be trying to develop points of agreement as the Congress works on a continuing resolution or appropriations bill in FY 2014."

Meanwhile, ADAPs have already experienced a major systemic shock between the changes in the funding formula, and the pending cuts from Sequestration. Data from the Health Resources & Services Administration (HRSA) demonstrates the changes between this year's number with last year's totals.

(Editor's Note: The totals are calculated from the actual reduction from last year per locality after subtracting accounting adjustments and carryovers from prior years). The numbers paint a picture that should keep Ryan White stakeholders on the edge of their seats.

PART A FUNDING: (Avg. Cut  7.12%)
The Part A spreadsheet encompasses all Part A areas in the country. This section of funding had experienced a few changes, including:
1) There was a new TGA in the Part A funding stream (i.e., Columbus, Ohio) , As a result, the EMA/TGA pie had to be divided up with one more additional locality.
2) Sequester had played a varying effect per locality as reflected by the percentages.
3) Shifting trends in epidemiology and formulas towards the South; therefore the cuts were somewhat cushioned and less drastic.

PART B FUNDING: (Avg. Cut  5.61%) 
The Part B Basic Earmark spreadsheet is the bulk (90-95%) of the Federal Grant to the States for ADAPs.
1) The Part B Grant for Medical Services has not been broken out yet as that will take some time to separate and compile that data as the Part B grants are multi-layered.
2) Again, Sequester had played a big factor in the reduction but the Southern States were saved the brunt of the Sequester because of a new formula change.

Eddie Hamilton, who heads up the ADAP Educational Initiative, summarized it best: "The grassroots do need to be afraid of sequester 2.0 coming up as it looks like Congress won’t be able to change that anytime soon."

In light of the current political climate on Capitol Hill, practically everyone with an interest in protecting HIV/AIDS supports and services is taking nothing to chance. Considering that the Ryan White law -- and especially the AIDS Drug Assistance Program (ADAP) -- has long enjoyed bipartisan support, education efforts to remind lawmakers of its importance are ongoing, including a new web video released by the AIDS Healthcare Foundation.

[Photo: AHF Ryan White Video]

One thing is for certain, prematurely opening up a popular law that doesn't require reauthorization could prove disastrous in the hyper-partisan, hyper-political environment that has consumed the current Congress.  Any suggestion to the contrary simply ignores the political realities that exist today. A more cautious approach might be pursuing a legislative technical fix.

The reality of the situation is best summarized by Bill Arnold, President & CEO of the Community Access National Network (CANN): "The issue boils down to congressional staff has no appetite to enter the debate over a full reauthorization until they have data after Affordable Care Act implementation, and can assess the impacts nationally, as well as locally."

Arnold suggests that the data won’t be available until well after “opening day” on January 1, 2014, and it will likely take all of that same year to clean and sort through the data. "That argues for a serious attempt to reauthorize in 2015, especially since it will also be past congressional election," Arnold said.

The bottom line is Ryan White stakeholders must remain vigilant in their efforts to maintain the nation's oldest and only law solely dedicated to providing life-sustaining supports and services to people living with HIV/AIDS in the United States. No one could disagree that the need exists. How the "community" achieves that objective is open to interpretation.

Stay tuned.

[1] Department of Public Health, Los Angeles County, California, "SECTION-BY-SECTION DESCRIPTION OF RYAN WHITE HIV/AIDS TREATMENT EXTENSION ACT OF 2009,” December 2009.

Profiles in ADAP Leadership

The ADAP Advocacy Association hosted its 3rd Annual ADAP Leadership Awards Dinner on Monday, July 8th in Washington, DC. The event marked an opportunity for stakeholders invested in the AIDS Drug Assistance Program (ADAP) -- most notably people living with HIV-infection -- to celebrate the accomplishments achieved and leadership demonstrated by individual, community, government, media and corporate leaders who are working to improve access to care and treatment. It was headlined by the Honorable Tommy G. Thompson, former Governor of Wisconsin and former Secretary of the U.S. Department of Health & Human Services.

Thompson's keynote provided a reflective glimpse into all that the HIV/AIDS community has achieved over the last several decades, both domestically and abroad. It also showed that HIV/AIDS transcends partisan politics.

His understanding of the unique challenges facing people living with HIV-infection dated back to his tenure as Wisconsin's 42nd Governor, and it continued into his service at the federal level. While serving as the Secretary at HHS, ADAP federal appropriations increased from $571 million in 2001 to $787 million in 2005. He also oversaw the $20 million in emergency ADAP funding that was released during the first ADAP waiting list crisis nearly a decade ago. Working alongside Secretary of State Colin Powell, Thompson was instrumental in developing President George W. Bush's PEPFAR initiative and chaired the Global Fund to Fight AIDS, Tuberculosis, and Malaria, a worldwide effort that focused on the problem around the world, with annual trips to Africa. 

Thompson was presented with the ADAP Advocacy Association's first-ever "ADAP Lifetime Achievement Award" as a 'thank you' for his decades of public service commitment to people living with HIV-infection.

Following the keynote, Brandon M. Macsata, CEO of the ADAP Advocacy Association, presented the ADAP Leadership Awards.  The 2012-2013 award recipients included:

• ADAP Champion of the Year (individual): 
• President Barack Obama
• ADAP Emerging Leader of the Year (individual): 
• Julio Fonseca, HealthHIV (Wash-DC)
• ADAP Corporate Partner of the Year: 
• HarborPath
• ADAP Community Organization of the Year: 
• AIDS Foundation of Chicago
• ADAP Lawmaker of the Year: 
• The Honorable Tom Coburn, M.D., U.S. Senate (OK), The Honorable Donna Christensen, M.D., M.C. (Virgin Islands)
• ADAP Social Media Campaign of the Year: 
• My HIV Journey by Aaron Laxton
• ADAP Grassroots Campaign of the Year: 
• Syringe Decriminalization Campaign by the North Carolina Harm Reduction Coalition
• ADAP Media Story of the Year: 
• Why Some with HIV Still Can’t Access Treatment by Sarah Childress, PBS Frontline

Upon announcing the 2012-2013 awardees earlier this year, Macsata stated, “The ADAP Advocacy Association is pleased to present this year’s recipients of its annual leadership awards, as we recognize a truly distinguishable group of awardees who have demonstrated a keen interest in preserving access to care under the AIDS Drug Assistance Program...thousands of underserved people living with HIV/AIDS have gained access to care and treatment, thanks to this year’s awardees."

The significance of the combined commitment to excellence displayed by the 2012-2013 awardees cannot be understated. According to the National Alliance of State & Territorial AIDS Directors (NASTAD), there were 4,717 people in 12 states on ADAP waiting lists, as of January 12, 2012. As a result of FY2011 ADAP emergency funding, Alabama, Florida, Georgia, Idaho, Louisiana, Montana, North Carolina, Ohio, South Carolina, Utah, and Virginia were able to reduce the overall number of people on their waiting lists.  As of April 19, 2012, that number had decreased 3,079 people on ADAP waiting lists in 10 states.  By mid-year, there are 2,170 people on ADAP waiting lists in 9 states. The total number of people on waiting lists had decreased 77 percent since a high of 9,298 individuals on September 1, 2011.  The most dramatic decrease occurred in the latter part of the year when NASTAD reported only 58 people on ADAP waiting lists in four (4) states, as of December 13, 2012.

The bar this year was set very high starting with President Obama's budget including additional federal appropriations for the cash-strapped ADAPs, as well as his numerous unilateral attempts to funnel more funding into the program via intra-department transfers. The latter action, first announced on Worlds AIDS Day in late 2011, led to the dramatic decrease in the number of people living with HIV-infection languishing on ADAP waiting lists.

Additionally, Julio Fonseca's efforts at HealthHIV with its Workforce Capacity Building have led to greater awareness within the medical community and elsewhere by matching physicians, nurse practitioners, and physician assistants to HIV clinical experts who provide one-on-one coaching, education, and training. Sarah Childress' reporting at PBS Frontline showed that some in the news media not only haven't turned a blind eye to HIV/AIDS in America, but truly understand the negative consequences of restricting access to care. Her story, "Why Some with HIV Still Can’t Access Treatment," represented one of the most comprehensive analysis of the problem facing thousands of people living with HIV-infection in the United States, especially those on ADAP waiting lists.

Senator Tom Coburn (R-OK) and Rep. Donna Christensen (D-Virgin Islands) reassured ADAP stakeholders that bi-partisan, bi-cameral support for Ryan White CARE Act programs still exists in the U.S. Congress. Rep. Christensen was in attendance to accept the Lawmaker of the Year Award, sharing her past experiences as a physician in the Virgin Islands trying to treat patients with virtually no medical treatment options available on the island.

The awards also reminded ADAP stakeholders that traditional grassroots advocacy is alive and well today, and so is the emerging advocacy platform of social media. The North Carolina Harm Reduction Coalition was represented by its Executive Director, Robert Childs, who accepted the Grassroots Campaign of the Year Award for their Syringe Exchange Decriminalization Campaign. Whereas Aaron Laxton could not attend the event in person, he posted a video on his YouTube page accepting the Social Media Campaign of the Year Award for his My HIV Journey vlog.

Finally, nonprofit community organizations and corporations also proved that their contributions remain invaluable. The AIDS Foundation of Chicago's efforts in Illinois prevented a potentially devastating cut to that state's ADAP, thus keeping hundreds of patients actively in care and treatment. HarborPath's new patient assistance portal links patients, who would otherwise not be receiving care and treatment, with life-saving medications donated by pharmaceutical companies. Their combined efforts earned them the Community Organization and Corporate Partner awards, respectively.

For three years running, even if just for a few hours, ADAP stakeholders came together in celebration...and appreciation. The evening ended with countless hugs, congratulatory salutes and a renewed sense of purpose. Much work remains to be done!

[Event Photos]

Brandon M. Macsata presents Tommy G. Thompson with the ADAP Lifetime Achievement Award

Brandon M. Macsata (left), Rep. Donna Christensen (center), Bill Arnold (right)

Brandon M. Macsata (left) presents Dr. Grant Colfax with the ADAP Champion of the Year Award, which was awarded to President Barack Obama

 

Personal Perspective: Impact of HIV Criminalization

By Robert Suttle

The talk about curing AIDS is rhetoric, unless one also includes curing injustice in our criminal justice system and curing stigmatization of people with HIV and others society sets apart, making them "the other,” like positive women, sex workers, men who have sex with men, drug users, transgendered persons, migrants, and our LGBTQ youth. We can’t cure HIV/AIDS until we address the whole host of public health issues that exacerbate the epidemic.

I am not a criminal. I am not a sex offender, but the state of Louisiana says that I am.  A former partner, with whom I had a contentious relationship, filed charges against me for not having initially disclosed my HIV-positive status when we first met. This was not about transmitting HIV - I wasn't accused of that - just about whether or not I shared my HIV status. I spent my savings to hire a lawyer and ultimately accepted a plea bargain, rather than risk a 10-year sentence. I served six months in prison for a conviction under Louisiana's so called "Intentional Exposure to the AIDS Virus" statute. Now I am obligated to register as a sex offender for 15 years. On my Louisiana driver's license, underneath my photograph, it says in large red capital letters "SEX OFFENDER". 

When I was released from prison, in January 2011, I knew that I needed a new life plan. I was now not only a gay black man with HIV, but also a convicted felon and registered sex offender. My career had been in the state appellate court system, but they could not hire a convicted felon. My employment options were limited. I also knew that I had suffered a terrible injustice, although I did not know it had a name: "HIV Criminalization"

So, as I contemplated rebuilding my life, I remembered this saying: "your misery is your ministry" meaning that which pains you, that which causes you discomfort, that which has been burdened upon you is exactly that which can be your salvation, that which can be your calling, that which can be the way you become of service to your fellow man…. and woman.  This lesson has given me the courage to become an advocate to combat stigma, discrimination and criminalization. 

What is HIV Criminalization?

• HIV criminalization is the inappropriate use of one’s HIV status in a criminal proceeding
• “HIV-specific” statutes that punish the failure to disclose one’s HIV+ status prior to sex
• “HIV-specific” statutes that enhances sentencing for HIV+ people charged with certain crimes
• About 2/3 of U.S. States and Territories have such “HIV-specific” statutes

Today

• More than 1,000 instances when HIV-specific charges have been filed
• HIV transmission rarely a factor (<10%)
• 25% of recent cases are for spitting, scratching and biting
• Condom or low viral load not a defense
• Every person with HIV one disgruntled ex-partner away from a courtroom

What We Now Know

• Discourages testing and cooperation with public health, does not reduce risky behavior (O’Bryne)
• Undercuts personal responsibility message, tells HIV negative people that HIV prevention isn’t their job
• Creates an illusion of safety for those negative or untested and encourages blame
• Reinforces stigma and misconceptions about real routes, risks and consequences of HIV transmission

Public health and the criminal justice system aren't coordinated. If our goal is to improve public health, then we need the law to reflect good public health practice and not contribute to the stigmatization of people with HIV as viral vectors, potential infectors and inherently dangerous.

www.seroproject.com

Today, I am assistant director of the Sero Project, a national organization founded by people with HIV combating stigma, discrimination and criminalization while supporting efforts to empower people with HIV to become meaningfully engaged in policy making and service delivery and leaders in the fight against HIV/AIDS.  We work with a large national network of activists and advocates, particularly others with HIV, as well as public health, criminal justice, medical and scientific professionals, political and public policy leaders, the media and other not-for-profit and grassroots organizations. Our work to date has included documentation of the HIV criminalization phenomenon, outreach to engage and empower those who have been prosecuted or are at greatest risk of prosecution and community education and advocacy mobilization.

In the past year we have spoken at or participated in more than 60 public events, ranging from professional conferences to community forums, worked with scores of journalists, created a support and advocacy network of people who have been prosecuted for HIV crimes, undertaken original research and supported local and statewide advocacy efforts. We see HIV criminalization as a public health concern, as well as an injustice to people with HIV, and to counteract or prevent the characterization of the issue as one defined by a liberal/conservative or partisan divide. 

We have made significant progress in educating communities on how HIV criminalization, as a most extreme manifestation of stigma, is creating, not preventing, new HIV infections.  We also have helped create tools and provide inspiration and guidance for the mobilization necessary to modernize statutes, combat stigma and discrimination and create an environment where it is safer for people with HIV to disclose their status.

This message, however, isn't about what happened to me. It is about how easily it could happen to any of you. It is about what is happening right now to increasing number of men and women with HIV all over this country and all over the world. The only people who will stop this epidemic of injustice are those of us who understand how insidious and destructive HIV stigma can be. If we do not make this issue a priority, if we do not lead, and if we do not demand change, it will never happen.

Support the REPEAL HIV Discrimination Act (H.R. 1843)

For more information, email us at info@seroproject.com or visit seroproject.com, LIKE us on Facebook and Follow us on Twitter @TheSeroProject

ADAPs Under the Gun with Federal Funding Cuts

The AIDS Drug Assistance Programs (ADAPs) have had a rocky start in 2013. Initially, sequestration -- which are the budgets cuts to particular categories of federal spending that began on March 1, 2013 as an austerity fiscal policy that were enacted by the Budget Control Act of 2011 [1] -- is reportedly going to result in up to 15,700 people living with HIV/AIDS losing their access to treatment. As if the sequestration wasn't bad enough, ADAPs took another blow later that month when President Obama signed into law the Consolidated and Further Continuing Appropriates Act of 2013 on March 26, 2013. [2]  The CR failed to include the $50 million that was announced on World AIDS Day last year by the president ($35 million for ADAPs; $15 million for Part C clinical care).

It remains unclear how sequestration will impact ADAPs, but reports indicate that the funding could be cut by as much as 5.2%. The combined impact of the federal funding cuts under sequestration and the CR will likely result in ADAP waiting lists.

As of April 11th, three states still had waiting lists left over from the "Perfect Storm" that ravaged ADAPs for several years, resulting in nearly 10,000 people living with HIV/AIDS being denied access to treatment. According to the National Alliance of State & Territorial AIDS Directors (NASTAD), Idaho has 14 people on its waiting list, South Dakota has 17 people on its waiting list and Florida currently has a waiting list, although no one is on it. [3]

NASTAD also reports the following cost containment measures: [4]

• Florida: Formulary reduction 
• Idaho: Enrollment cap 
• Illinois: Formulary reduction, expenditure cap (monthly) 
• Indiana: Enrollment cap 
• Kentucky: Expenditure cap (annual) 
• Montana: Elimination of all support services 
• New Mexico: Expenditure cap (monthly) 
• Puerto Rico: Formulary reduction 
• South Dakota: Expenditure cap (annual) 
• Tennessee: Formulary reduction 
• Utah: Formulary reduction, enrollment cap 
• Virgin Island (U.S.): Formulary reduction 
• Washington: Pay insurance premiums only if client is prescribed and taking ARVs
• Wyoming: Enrollment cap

Whereas there is an advocacy effort underway to convince The White House to re-program the funding that was lost under the CR back into ADAPs, there is no certainty that it will occur. And it most certainly will not occur unless the HIV/AIDS community is vocal about it.

To that end, 169 organizations endorsed a national sign-on letter that was spearheaded by the ADAP Coalition and sent to President Obama on April 8th. The letter, in part, reads: "We greatly appreciate your leadership on the domestic HIV epidemic. Your prioritization of addressing the ADAP crisis by providing $70 million in emergency funding over the course of 2010 – 2012 and an additional $15 million for Part C programs during FY2012 demonstrates your deep commitment to individuals living with HIV/AIDS. On behalf of these individuals, we hope that you continue your steadfast leadership by authorizing again this transfer of $45 million as soon as possible in FY2013."

Numerous organizations are also coordinating various advocacy efforts. The ADAP Advocacy Association will be dedicating a significant portion of its 2013 Annual Conference to this issue when it convenes in Washington, DC this summer.

In the meantime, ADAP stakeholders should be aware that The ADAP Coalition has published its ADAP Need Number for fiscal years 2013 and 2014:

"FY2013 and FY2014 – Based on the model, in order to maintain the program and allow for new enrollment, there is a need for an additional $54 million in revenues for ADAPs in FY2013, and $134 million in revenues in FY2014. These amounts have been divided into a federal and state share based upon historical data and the current fiscal situation in states. Historically, the federal share was 80 percent and the state share was 20 percent. Due to the current fiscal crisis among states the split has been adjusted to an 85 percent federal share and a 15 percent state share. The state share of the increase is based upon the current portion (13 percent) of total ADAP revenues that derive from state appropriations and a recognition of the severe fiscal constraints facing states at this time. The 85/15 percent split is applied to the overall ADAP revenue. The final projected additional remaining federal need for FY2013 is $46 million and the increased need for FY2014 is $114 million for a total of $160 million."[5]

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[1] Wikipedia, "Budget sequestration in 2013," 2013.
[2] Public Law, 113-6.
[3] National Alliance of State & Territorial AIDS Directors, "The ADAP Watch," April 11, 2013.
[4] National Alliance of State & Territorial AIDS Directors, "The ADAP Watch," April 11, 2013.
[5] The ADAP Coalition, "ADAP Budget Projection - Fiscal Years 2013 and 2014," January 2013.