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.

HealthHIV State of HIV Primary Care Survey

HealthHIV is assessing the impact of the rapidly changing healthcare environment on HIV primary care providers.  They once again partnered with Medscape to conduct the 3rd annual "HealthHIV State of HIV Primary Care Survey" of healthcare providers.  This survey explores the latest issues in HIV service delivery including linkage and retention, reimbursement and readiness for health reform.  These data will help to identify how service delivery approaches can be conceptualized and implemented in this rapidly changing landscape, while addressing the rising demand for quality HIV primary care nationwide. 

If you are a prescribing provider, your perspective on the current HIV landscape is extremely valuable and your input would be greatly appreciated.  To take the 10-15 minute survey, please click the link below. Please share the link with providers that you know as well.

Click the following link to complete the survey:

https://www.surveymonkey.com/s/LTWGBY7

A Two-Front Battle Facing ADAP: HIV/HCV Co-Infection

Despite very little news coverage, there is a storm brewing that will have a serious impact on the nation's already-strained public health system.

People living with HIV infection are disproportionately affected by viral hepatitis; about one-third of HIV-infected people are co-infected with Hepatitis C, which can cause long-term (chronic) illness and death. Hepatitis C progresses faster among people living with HIV infection and people who are infected with both viruses experience greater liver-related health problems than those who do not have HIV infection. Although antiretroviral therapy has extended the life expectancy of people living with HIV infection, liver disease—much of which is related to Hepatitis C has become the leading cause of non-AIDS-related deaths among this population.

ADAP Coverage of Hepatitis C Treatment, June 2011

Here are some sobering important facts about HIV/HCV co-infection:

• 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]

Undoubtably, public health systems are facing a grim reality as more people are co-infected with HIV/HCV.  Currently, there are twenty-eight (28) states that have Hepatitis C treatment as part of their drug formulary under the AIDS Drug Assistance Program (ADAP).[2]  It is therefore important to examine relevant cross-section between HIV/HCV with respect to ADAPs.

HIV/HCV co-infection remains a growing and evolving epidemic. Advances in HIV medication since the introduction of HAART in 1996 has increased a detection of sexually transmitted HCV infection. Sexual transmission of HCV is becoming a growing concern amongst MSM as discussed in an MMWR report released July 22, 2011.[3]

ADAPs provide HIV-related prescription drugs to low-income people with HIV/AIDS who have limited or no prescription drug coverage. With nearly 200,000 enrollees, ADAPs reach approximately one-third of people with HIV estimated to be receiving care nationally. In June 2008 alone, ADAPs provided medications to about 110,000 clients and insurance coverage to thousands more. 

HCV is a common co-infection in people living with HIV/AIDS. An estimated 200,000-300,000 people in the United States are co-infected with both HIV and HCV infections. Experts believe that about 25% - 30% of Americans living with HIV are also co-infected with HCV; conversely some 10% of people with HCV are thought to also have HIV infection.  Currently specific ADAP funding does not exist to support treatment for Hepatitis C. However, some states with robust ADAP budgets use Part B money to pay for HCV treatment for co-infected clients.

The Community Access National Network (CANN) has recognized this emerging public health concern, and recently announced the formation of its new hepatitis initiative.  The “HEPATITIS: Education, Advocacy & Leadership” Project also known as HEAL, will participate in various hepatitis stakeholder groups to map out strategies on prevention, education, treatment and access to care, with a particular focus on HIV and Hepatitis C (HCV) co-infection.

“CANN has long been recognized for its commitment to promoting patient access to timely care and treatment, and the HEAL project will educate consumers, community partners, as well as congressional staff here in Washington, D.C. about the fastest growing public health epidemic since AIDS: HCV infection,” summarized Bill Arnold, President & CEO of the Community Access National Network.  “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.” 

To that end, HEAL will be collaborating with the ADAP Advocacy Association in April to host an HIV/HCV Co-Infection ADAP Summit in Las Vegas, NV.  The purpose of the HIV/HCV Co-Infection ADAP Summit is to provide the latest information to appropriate ADAP stakeholders on Hepatitis C drug development, patient assistance programs, and other updates about HIV/HCV co-infection; identify funding shortfalls within ADAP, and bring to the forefront dialogue and a strategy to attain more funding for ADAP to treat co-infected clients; identify potential HCV rebate dollars available using ADAP rebate methodology; and facilitate ongoing dialogue between ADAP stakeholders, pharmaceutical industry and other applicable entities in order to collectively identify practical strategies to improve access to care for people co-infected with HIV/HCV. 

Interested parties should inquire at info@adapadvocacyassociation.org.

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

[2] National Alliance for State and Territorial AIDS Directors (NASTAD), National ADAP Monitoring Project Annual Report, 2011.

[3] U.S. Centers for Disease Control & Prevention, MMWR Vol. 60 No.28, July 22, 2011.

Vigilance on World AIDS Day

The ADAP Advocacy Association, also known as aaa+, encourages people living with HIV/AIDS, their families and supporters to remain vigilant on World AIDS Day.  Despite the tremendous progress achieved over the last year to eliminate waiting lists under AIDS Drug Assistance Programs, there remain nearly one hundred people living with HIV/AIDS being denied access to appropriate, timely care and treatment.  Celebrating World AIDS Day should represent an important first step in the coming year to completely eliminate ADAP waiting lists nationwide.

“World AIDS Day is a time to reflect on the struggles, challenges, as well as accomplishments achieved over the decades-long fight against HIV/AIDS,” said Brandon M. Macsata, CEO of the ADAP Advocacy Association.  “There is no better example in recent times than what we’ve witnessed over the last 10 years with literally thousands of people living with HIV/AIDS being denied access to the care and treatment in the United States, that we know will keep them healthy, productive members of their communities.  The fight over eliminating ADAP waiting lists has experienced some highs, and lows, but moving forward we need to remain focused on ensuring that not one single person is refused life-saving medication under the AIDS Drug Assistance Program.”

aaa+ and ADAP stakeholders are grateful for the additional $48.3 million appropriated toward the cash-strapped ADAPs this year – which includes the $35.0 million in additional funding announced by President Obama on December 1, 2011.  According to Macsata, however, ADAPs need approximately $190 million in additional funding over current levels to eliminate the years of structural funding deficits, as well as keep pace with current demand.[1]

As of November 15th, there were 87 individuals in 5 states on ADAP waiting lists, including 8 people in Idaho, 58 people in Louisiana and 21 people in South Dakota.

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[1] AIDS BUDGET AND APPROPRIATIONS COALITION, “FY 2013 Appropriations for Federal HIV/AIDS Programs,” October 19, 2012.