Reflections from an HIV Advocate's Journey: Kamaria Laffrey

By: Kamaria Laffrey, Co-Executive Director at The Sero Project

Coming up on recognizing my 20th year of living with HIV in September, I have taken time to anchor myself in gratitude for the life I get to live. When I chose to be public about my status, I wasn’t seeking visibility to propel myself into any position in life, I simply didn’t want another Black, young mother like myself to go through what I went through. Educating about prevention is what started out my advocacy as I was called on to share my story at various events. I was always grateful to be with youth especially and keep up with many of those that I educated as they are adults and have families now. 

The more I told my story over the years, re-disclosing and living through various levels of grief, shame, and trauma, I had to recognize I didn’t live in that space anymore. At 27, I realized I wasn’t the sheltered, scared, insecure, college girl that didn’t know she had a voice. That meant, my narrative had to shift. That meant, I no longer wanted to position myself in prevention education as a cautionary tale. That meant I finally saw my humanity on the level that I wanted others to see me, without the veil of stigma. That was key. 

Then, I doubled down on learning as much about HIV beyond prevention as I could. I focused on treatment adherence and began hearing about undetectable equals untransmittable. I signed up for mailing lists and participated in any free webinar I could to hear folks with years of experience talk about emerging issues and innovative ideas. I found myself showing up at local health events and if sexual health was on the agenda, I made sure to insert HIV. I took up space so that I could learn. 

It opened my eyes to intersectionality and bodily autonomy and I give credit to Positive Women’s Network and The Well Project for introducing me to building this framework in my advocacy. All of this eventually built the path that I am now in serving as the co-executive director of The Sero Project where we center PLHIV leadership to end the criminalization of HIV, mass incarceration, and racial and social injustice by supporting inclusive PLHIV networks to improve policy outcomes, advance human rights and promote healing justice.

When I hear people talk about ending the HIV epidemic, I pause and look for the words between the lines. Twenty years of living with anything can mold you, shape you and form your identity. I have spent 20 years advocating to be heard, valued, healthy, and sustained in my life and that takes a firm place in acknowledging a collective identity. Part of battling the stigma of HIV for me is to never forget who I was before my diagnosis, not just in remembering where I come from but remembering my dreams and goals, aspirations and hopes. I have always been an introspective person, so in my reflection, in my gratitude, I am always assessing, who is Kamaria when HIV ends?  

And that thought never terrifies me, but I am deeply concerned for my community because so many of us have our identities anchored to this diagnosis. I am concerned that when we cling to that, we sometimes get in our own way or jump on a hamster wheel of validation because we are afraid to step into a bold imagination of our future, a real-world and place where HIV doesn’t exist. Public health in concept should be forever, HIV shouldn’t be. 

So, for me, 20 years of living with HIV could have been done in secret and my life would not be what it is today. I am grateful to have met and worked alongside so many courageous people over the years. People who love to and are incredibly talented in their passion to cook, foster pets, braid hair, rock climb, collect Funko pop, create fashion lines, raise their children, garden, knit, and perform spoken word - vastly beautiful beings that have shown me living beyond a diagnosis of HIV and stigma is not just possible, but my right. Liberation is our right. Right?

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Linkages to Care During Post-Incarceration

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

The ADAP Advocacy Association late last year announced its Correctional Health Project, which aims to raise awareness about issues confronting formerly incarcerated populations living with HIV/AIDS (and/or Hepatitis C) who also access care and treatment (or whom could benefit from such care and treatment) under the AIDS Drug Assistance Program ("ADAP"), as well as provide useful resources and tools to the communities serving them. A subsequent blog also focused on the issue. While this approach is an effort to sharpen the scope and need for access to care and treatment for HIV-infection (and/or HCV) among formally incarcerated populations, it is equally important to widen to the lens just for a minute in order to see where we stand globally on the issue of incarceration.

Incarceration rates are highest in the United States out of any country, which translates to 910 per 100,000 adults.[1] When you factor in the 1.2 million people living with HIV in the U.S, a sixth of this population are entering prisons and jails and also transitioning back into their communities.[2] This sets the stage for an enormous request to address the needs of these populations so that the public health system may begin to seal the cracks that they fall through by utilizing accurate assessments and combining it with proactive case management in order to link them to care.

Programs do exist, such as State ADAPs, which are designed to assist these individuals. But the most recent National ADAP Monitoring Project demonstrates that ADAPs are assisting some of these individuals, it is also clear more can be done to assist them. The National AIDS Strategy also provides some guidance to help formerly incarcerated populations achieve viral suppression.

Viral suppression is crucial for HIV-positive ex-offenders during post-incarceration but the challenges that they face can seem monstrous and when faced with so many immediate competing needs like housing, food and transportation, continuity of viral suppression may fall by the waste side. Very often the linkage to care is lost for these populations due to poor discharge planning and thus limited access to quality based community programs. As a result the natural onset of vulnerability that is placed on an HIV-positive ex-offender is amplified when re-entering their communities that the possibility for them to engage in risky behavior like drug use, and transactional unprotect sex to maintain goods increases. These negative affects of poor discharge planning not only hurts the ex-offender but also hurts those within their community with other possible new cases of infection if they are not adherent to their medication.

Photo Source: SERO

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Jails and prison systems are such dynamic institutions that they face additional compounding challenges to providing heath services other than HIV. With such a revolving door, these institutions have to tackle issues like addiction and mental illness. However, what seems to be alarming is the rate of HCV infections. A team of researchers at the National Drug and Alcohol Research Centre at the University of New South Wales in Sydney pooled together a series of data from 196 countries spanning from 2005 through 2015 that aimed at determining the number of inmates with HIV, hepatitis B virus, hepatitis C virus, and TB. This data indicated that out of 10 million inmates, HCV ranked at the top with 15.1% of infections and with HIV estimated at 3.8% of infections.[3]

As the ADAP Advocacy Association's Correctional Health Project continues to take shape, it is important to convey some of the needs driving our interest behind it. Important community resources will be made available in a few months.

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[1]  The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from: https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(17)30209-6/fulltext?code=lancet-site
[2] The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from: https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(17)30209-6/fulltext?code=lancet-site
[3] HIVandHepatitis. (2016, September 07). AIDS 2016: Neglect of Infectious Disease in Prisons Highlighted at Conference. Retrieved from: http://www.hivandhepatitis.com/hiv-epidemiology/5845-aids-2016-neglect-of-infectious-disease-in-prisons-highlighted-at-conference

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Would You Like Some Carolina Sweet Tea with Your Felony Charge?

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

When the time came to move out of New York City, I set my sites on moving down South. I have always heard that the South was very welcoming and full of charm, so I was naturally very exited to replant my roots in North Carolina. The southern charm of being in North Carolina was short lived because up until recently the state had an outdated HIV criminalization laws that required individuals living with HIV to disclose their HIV status to any sexual partners.

Failure to do so, among other requirements under the law, would result in serious consequences like prosecution and jail time. According to the Sero Project, in North Carolina the maximum penalty for violation is two years in prison if convicted.[1] There are numerous and various cases of this including a man living with HIV being convicted and then sentenced to 35 years in prison for using a deadly weapon on a police officer… his saliva.[2]

As a man living with HIV it sets off all my alarm bells for various reasons. The first is that much of driving force behind the adoption of the HIV criminalization laws was the fear that surfaced during the early years of the epidemic. Thirty years ago, it was certainly a death sentence but modern medicine has changed that diagnosis with the great leaps in antiretroviral therapy. According to the Centers for Disease Control & Prevention, anyone living with HIV who takes anti-retroviral medication as prescribed, and who have an undetectable viral load, presents no risk of transmitting the virus to an HIV-negative person.[3]

Unfortunately, many things have not changed along side modern medicine, such as fear, misconceptions and uninformed beliefs and thought processes regarding HIV. Additionally what concerns me with HIV criminalization laws is that it continues to keep the stigma that is attached to being HIV-positive in place. There are numerous forces that put in enormous effort to diminish or eradicate stigma but these laws set back all of the progress that has been made over the years. What these laws ultimately do is create a level of fear that is dangerous for those who are HIV-negative and HIV-positive. For those who are HIV-negative the fear of prosecution from an HIV diagnosis keeps them from being tested when the real fear is not knowing or infecting others unknowingly. For those who are HIV-positive the stigma and fear of prosecution pulls them away from seeking treatment or continuing their care. The end result is detrimental to those in and out of the HIV community and completely counterproductive.

Luckily, the recent change to the HIV-criminalization law in North Carolina has changed the steering for us as a collective society to head in a different direction.[4] Under the new law those living with HIV no longer have to disclose their HIV status to sexual partners if they are virally suppressed for six months or longer. Along side these changes, the revised law also reflects a change in language, which replaces “a person infected with AIDS” with “a person living with HIV”. While these changes are small they have huge impacts in the fight against HIV and the stigma that is attached to it. This revision is aligned with the changes that have occurred since the beginning of the epidemic and reflect more accurately the realities of living with HIV and the consciousness that is needed in order to ensure that we, as a collective society, are informed appropriately and accurately. If we continue this upward pace then things will definitely start getting a little sweeter down here.

Photo Source: Western North Carolina AIDS Project

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[1]  The Sero Project. North Carolina. Data from the GNP+ Global Criminalization Scan. Retrieved from: http://www.seroproject.com/states/north-carolina/
[2] New York Times. (2008, May 16). Prison for Man With H.I.V Who Spit on a Police Officer. Retrieved from: https://www.nytimes.com/2008/05/16/us/16spit.html
[3] HIV Plus Magazine. (2017, October 22). CDC Officially Admits People With HIV Who Are Undetectable Can’t Transmit HIV. Retrieved from https://www.hivplusmag.com/undetectable/2017/9/27/breaking-cdc-officially-recognizes-undetectableuntransmittable-hiv-prevention
[4] Western North Carolina AIDS Project. (2018, Feb 20). HIV Criminalization Laws Change in North Carolina. Retrieved from: https://wncap.org/2018/02/20/hiv-criminalization-laws-change-north-carolina/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Thank You, Ryan White; ADAP Saves Lives

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The more things change, the more they stay the same.

In 1984, during the midst of the public hysteria over the emergence of AIDS in the United States, it was a 13-year old boy from Indiana who defined the courage of a nation. That young boy's name was Ryan White.

(To learn more about Ryan's story, click here)

Decades later, we honor that young boy from Indiana by celebrating the passage of the law named after him: Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. As the nation's only public healthcare program specifically designed to provide supports and services for people living with HIV/AIDS, it is hard to truly measure the impact it has had in linking patients to timely, appropriate care and treatment. Simply put; it has saved hundreds of thousands of lives since 1990!

A key component of the Ryan White CARE Act is the AIDS Drug Assistance Program (ADAP), which funds access to medications for the treatment of HIV-infection. Amendments to the law over the years have added additional language allowing ADAP funds to be used to purchase health insurance for eligible clients, as well as to pay for services that enhance access, adherence, and monitoring of drug treatments. Today, ADAP serves as model government program.

ADAP enjoys broad bi-partisan support. The program continues to receive more federal dollars annually (albeit far less than what is needed) despite budget austerity in Congress. It is routinely recognized as a cost-efficient, taxpayer-funded program. As recent as last month, we learned that ADAPs have also assisted in the success of the Affordable Care Act's implementation (Editor's Note: read our last blog, 68,000 Patients Obtained ACA Insurance Coverage, Thanks to ADAP).

The virtue's of the law were spelled out in an Op-Ed penned by Sean Cahill, PhD and Kenneth Mayer, MD. They call for additional federal and state funding, more front-line public health training, better culturally competent and nondiscriminatory care, and increased program coordination. The ADAP Advocacy Association agrees!

Yet, despite the progress of the last few decades there still remains an underlying barrier preventing access to care for far too many. That barrier is stigma. It is the very same stigma that Ryan White confronted while attending Western Middle School in Indiana some 31 years ago.

According to the SERO Project, currently there are over thirty States across the nation with "HIV-specific" statutes criminalizing some aspect of HIV/AIDS. Even in States without an HIV-specific statute, people living with HIV/AIDS are still at risk of prosecution under other criminal statutes.

Source: SERO Project

As we celebrate the extraordinary life of a 13-year boy who won over the hearts of a nation (and helped to educate them, too), as well as the law named after him to help the people living with the same disease, let's remember there is much more work to be done!

Thank you, Ryan White!