Category: Positive Thoughts

By Porchia Dees

I am a Beautiful Black Queen Living with HIV. It has taken a long time for me to come to terms with that statement because the concepts of beauty and HIV don’t usually go together. Growing up poz and trying to cope with the stigma surrounding my experience has been challenging, to say the least. I am a part of the first generation of children who were born positive. I was born on Dec. 5, 1986. At the time, my biological mother was using drugs and heavy in her addiction. If it weren’t for my aunt, who I call mom and who took legal guardianship of me, I don’t think I would be here today.

My pediatrician told my parents that he didn’t think I’d live to see my 5th birthday, but clearly God had other plans. As a kid living with HIV, I was assigned a social worker who kept me involved in lots of events for children battling different life-threatening diseases. I attended camp every summer, which gave me the chance to be around other kids who understood what I was going through. We all had our camp “crushes.” But I would soon find out that dating at camp was a lot different from dating in the real world, and that the dating and hook-up guidelines we follow as a society are not inclusive of someone living with HIV – someone like me. My parents are old-school, African-American, super-religious types, so I never had the sex talk. My social worker at the hospital didn’t say this to me directly, but in her attempt to educate me on HIV transmission, without realizing it, she led me to believe that I would never be able to have sex or have babies. And there was one huge thing she forgot to prepare me for: stigma.

The next time I learned about HIV, I was a seventh-grader in Sex Ed. It terrified me. I remember sitting in a classroom of about 30 kids, with the health educator showing us all these disgusting pictures of sexually transmitted diseases, and listening to how grossed out everybody was. When she started talking about my experience, I got really quiet. The pictures she showed didn’t look anything like me. Instead, they were pictures of middle-aged, white, gay men or Africans wasting away. They were all pictures of people who were really sick or dying; there were no pictures of people who were healthy and living. Everyone left class believing that if you have sex, you could get HIV. And that if you get HIV, you are going to die. It made me even more afraid to have sex, and it further deepened the notion in my mind that someone with HIV wouldn’t be able to have a normal, healthy sex life.

Throughout the years, I had to learn how to navigate dating and sex with HIV on my own. The only thing I ever learned about disclosure was from my mom, who told me to be careful who I shared my business with because people in this world could be cruel.

Although my mother didn’t mean to, her advice, along with the isolation I was already feeling, further perpetuated stigma. She made me feel like I had something to hide, which in turn created more feelings of fear and shame. I struggled the hardest with stigma in my adolescent years. When I was younger and trying to fit in with the rest of society, it was hard for me to accept my HIV status, because it came with so many different misconceptions.

Dating and maintaining a social life became difficult for me, because of all the ignorance surrounding my experience. I dealt with many fake friends and lovers who would gossip about me and disclose my status to people, with the intent of making me look less attractive. I started to internalize all of the negative things that were being said.

I never thought I’d be able to have kids; I didn’t know what I could do sexually; I didn’t think I would be able to find someone open-minded enough to want to date me. I watched my mom pass away from AIDS-related illnesses during my junior year of high school, so I never really planned for a future, because I didn’t think I’d live to be the age I am today (33 years strong). I went through this really dark stage in my early 20s, and I almost died from rebelling and not adhering to my medication.

Stigma is killing people more than the actual disease now. Treatment adherence is greatly affected by the stigma. The treatment has come such a long way, and people are able to live long and healthy lives with HIV – if they can get connected to care and stay adherent to HIV medication. It is no longer a death sentence. It is a chronic, manageable illness.

I see it happen often. When someone is newly diagnosed, they internalize that stigma, which can lead to deep depression. They believe their lives are over and they will never be able to lead a normal, healthy life or find love. In my opinion, it’s because they struggle with this sort of pre- and post-diagnosis identity crisis, and being positive becomes hard to accept. I don’t have a pre-diagnosis identity to refer to, but I do know what it’s like to internalize the stigma that has been programmed into our minds.

The stigma has never sat well with me. Living with HIV is my normal, and I didn’t die. I am still thriving. I had to grow to understand that the insults, judgments, and shade that people attempted to throw were actually projections of their own fear, misconceptions, pain, and insecurities and that it had absolutely nothing to do with me.

For so long, I just let people gossip about their perceptions of my reality. Even today, every time I get up and share my story, I am extremely nervous, and my anxiety starts to kick in. I think it’s because I am experiencing PTSD from all of the stuff that I went through growing up, and remembering all the things people said about me. But then, as I push through that fear, I experience this sort of liberating sensation. I get to portray my experience in the way that I want to, and I get to change the narrative.

In hindsight, I can’t believe I let stigma keep me silent for so long. Now that I have embarked on this advocacy journey, it is like I am seeing things through a new lens. I have discovered this new world full of people who can either relate to living with HIV or with other parts of my story. By remaining silent, I was unconsciously allowing that stigma to thrive in the silence.

Disclosure has been one of the scariest, most difficult things to deal with in my experience. Yes, I have encountered a lot of ignorance and hate, but I have also found a lot of people who understand me, like me, and love me regardless. Contrary to what people believe about my experience, it has been a blessing in disguise, and I know now that this is a gift. I believe God created me specifically for this purpose: to change people’s perspective on what it means to live with HIV. To know me is to love me, and the beauty in that lies in the fact that my whole being dispels the stigma.

I am a Beautiful Black Queen, and my status doesn’t change that.

_Porchia Dees was born HIV positive in 1986 and is from San Bernardino, California. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBT wire service. Visit their websites – http://thebody.com, http://hivplusmag.com, http://positivelyaware.com, and http://poz.com – for the latest updates on HIV/AIDS.

| The lead organizer of the first National Trans Visibility March on DC urges action by HIV advocates in 2020.

By Oriol R. Gutierrez Jr.

Marissa Miller was the lead organizer of the first National Trans Visibility March on DC, which took place Saturday, September 28, in the nation’s capital. Thousands attended the march down Pennsylvania Avenue, which was preceded by a rally at Freedom Plaza.

Miller is currently the CEO of Transsolutions Consulting, a global resource center that advocates for the safety and universal health access for transgender, gender-nonconforming and nonbinary people across the country. For more than a decade, she has worked in public health with a focus on HIV.

As a Black transgender woman living with HIV, Miller has both personal and professional experience with the virus. She has worked with such groups as Howard Brown Health, AIDS United, Positively Trans and the Transgender Law Center.

Most recently, Miller was a program coordinator in the leading division of the National Minority AIDS Council (NMAC). She stepped away from that role just before the 2019 march to focus on planning the 2020 march.

How did the idea for the trans march originate?

In 2018, the Positive Women’s Network–USA had its third National Leadership Summit in Myrtle Beach, South Carolina. There was tension between some cisgender women and some trans women. It got rowdy, and it kind of scared me because I’d never been in a setting where people who were fighting for the same cause were so able to let words separate us.

As a result, Lynn Morrison, a trans advocate from Atlanta, suggested during the summit that we needed a trans march. About six months after that, Dejanay Stanton, a trans woman from Chicago, was killed. She died three days before she was supposed to start a class that I and my business partner, Tatyana Moaton, who has a consulting business in Chicago, were conducting. We were going to mentor 10 Black trans women from the sex industry.

Out of emotion—very disappointed at the system and at myself for not getting to Dejanay a little bit sooner—I posted on Facebook that we should have a trans march in 2019. The idea caught fire with tons of likes and shares.

Why was 2019 the time for the march?  

The Trump administration has made it abundantly clear that trans, gender-nonconforming and nonbinary people are not included in their narrative of who we are as a country.

They’ve made it difficult for trans people to access medical care. They’ve begun making it possible for folks to tell us that we can’t have jobs or access businesses and other services because we’re not really protected under the law.

We wanted to let them know that we have a right to exist. They are trying to erase us, so increasing the visibility of trans people right now was important. If they were not going to count us in the U.S. census, then at least they were going to count us in the streets.

Tell us about the rally and the march.

We originally wanted the march to take place on National Trans Visibility Day, which is March 31. As a result of underestimating the costs—as well as having the original date coincide with April Fool’s Day—we delayed. In the end, postponing the march helped us raise additional funds and bring in support to make it the best event that we could.

People from across the country attended both the rally and the march. Our opening reception was hosted the night before in DC by the National LGBT Chamber of Commerce, where we honored 16 advocates at our Torch Awards.

One of the people we honored was actress and activist Angelica Ross (from Pose on FX) for the work that she’s done as founder and CEO of TransTech Social Enterprises over the past decade, including sponsoring our virtual march. She wanted the trans march to reach everybody, so the virtual march made that possible.

The day before the march, we held workshops for march participants at our official hotel. Subjects ranged from financial equity and social media to health and wellness. They were designed to support participants in their advocacy.

The rally motivated the participants to get energized for taking our call to action to the streets. In addition to several musical performances, Angelica Ross and Lynn Morrison were among the many amazing speakers. The march itself saw thousands of participants walk down Pennsylvania Avenue, right past the Trump Hotel, all the way up to the Capitol Building.

Both at the rally and at the end of the march, you urged participants to get involved with the 2020 march. Why?

The 2019 march was a great start for our trans advocacy, but since 2020 is a crucial election year, the next march will be even more important. Our community partners—such as Rock the Vote, Human Rights Campaign and GLAAD—as well as our trans march ambassadors nationwide, will be spreading the word about the importance of voting in 2020. Get out the vote efforts will be happening from now through 2020, up to and including election day. The details of the next march haven’t been finalized, but we are confident it will take place in September 2020.

In addition to the next march, please tell us about your other efforts. 

I left NMAC to focus on the next march, but I am working on more projects. There is just so much work to do when it comes to trans advocacy in general. One of those projects is working as a consultant to TransTech Social Enterprises. I’ll be assisting Angelica Ross to build their conference.

I’m also working with TransTech to develop a safety device. For transgender, gender-nonconforming and nonbinary people, the issue of safety is a primary concern. We’re going to pilot the device in 10 major U.S. cities. We talk about HIV prevention and adherence to treatment for the virus. We know that equity and opportunity are part of the formula for ending the HIV epidemic by 2030. However, if we’re not safe, or don’t feel safe, all the other discussions become secondary. 

The device is not an app on a smartphone. It is a separate device that can be carried or worn discreetly. When activated, which will be as simple as pressing a button, someone the device owner preprogrammed into it will be notified that their friend needs assistance.

One of the things that we realized from having conversations about the device is that we didn’t want it to police the people who were using it. So that is why we envision it as a buddy plan.

All the hate crimes and murders affecting not only the trans community but also the LGBT community at large have made prioritizing safety a must.

You tested HIV positive in 1990. As a long-term survivor, please share your insights on living with the virus.

After I tested positive in the prison system, I just laid in my cell. At that time, I didn’t have a whole lot of information about HIV, and I certainly didn’t think that I would be celebrating my 50th birthday in 2020. I thought that I would be dead before I was 30.

Some of the cis-masculine individuals that I had in my life back then were always connected to HIV. They pushed me to be better. They pushed me to embrace living with HIV and to not let the virus tear me up.

Their encouragement led to my being put in positions of decision-making at the table. In turn, that allowed me to have broader conversations about transgender people and HIV.

From my perspective, leadership was never about others following me. Leadership was always about me taking people on a journey with me.

My advice to folks living with HIV is to keep living. Stay at the table—and if there is no table, create a table.

Oriol R. Gutierrez Jr. is the editor-in-chief of POZ magazine. Find him on Twitter @oriolgutierrez. This column is a project of Plus, Positively Aware, POZ, The Body and Q Syndicate, the LGBT wire service. Visit their websites — http://hivplusmag.com, http://positivelyaware.com, http://poz.com, and http://thebody.com — for the latest updates on HIV/AIDS.

By Jeff Berry

Dear Jeff,

It’s 1989, you’re 30 years old, and you are about to hear the most terrifying words you’ll ever hear in your entire life: You are HIV positive. Your world will come crashing down around you, and you’ll feel alone and full of shame.

I want you to know that you’re going to be OK.

I know it doesn’t seem this way right now, but you’ll be all right. Telling the people closest to you, your partner, your family and your friends, will be difficult and emotional for you. But they will still love you, just the same. They’ll support and lift you up, in good times and bad, even when things seem darkest and you are forced to face your demons.

You’ll find a good doctor, but right now there is only one drug to treat HIV, AZT, and it doesn’t really work when taken by itself. So your doctor will refer you to a therapist to help you deal with your diagnosis. While in therapy, you’ll reveal to another human for the first time that you were abused as a child by your father, a secret that you swore you would take to your grave. You won’t be able to even look the therapist in the eye, and your own eyes will be full of tears and sadness. But he will comfort and guide you, and from there you will embark on a lifelong journey of healing and forgiveness.

You’ll continue with your college education in the midst of your diagnosis, and finally get that degree that seemed so elusive right out of high school. The joy you will feel at this accomplishment will be like no other. _You did it!_ And your family and friends will celebrate this life achievement with you. You will be happy.

When you go to an HIV support group for help, you’ll be put on a mailing list to receive Positively Aware magazine, where you’ll read and learn about the virus. You’ll start volunteering for TPAN, the agency that produces the magazine, and eventually be hired to answer phones and perform data entry, and one day become editor.

It will become your life’s work, and your proudest achievement.

Your partner Jim will propose to you, and you will say, â€œYes!†You’ll have a commitment ceremony and buy a condo together. Eventually your 16-year relationship will end, but you will remain friends for life. But life will once again turn dark and scary.

Soon after you and Jim break up, Mom’s long fight with cancer will come to an end, and you and your family will be by her side as she draws her last breath at home in bed, her final wish. While your biggest fan and one of your greatest teachers in life will be physically gone, she will live on in your heart and your memories. Her love and her grace will continue to guide you throughout your life.

Your future husband, Stephen, you’ll meet at a bar not long after you move out to live on your own. You’ll fall madly in love and eventually move in and build a life together, and will one day legally marry (yes, you will be able to do that!).

You’ll live long enough to take advantage of effective antiretroviral therapy, unlike many of your friends. Warning: those early drugs have some pretty severe side effects. Hang in there! The kidney stones from Crixivan and diarrhea from Viracept will eventually be replaced by medications that are easier to take with fewer and fewer side effects, until one day, decades later, you’ll be on one pill, once a day.

The greatest gift and opportunity in life is when you will be given a platform to share your story, and help others share their own stories, of survival. It is not something that you will take lightly. You understand that you have a responsibility to get the facts right, and to be willing to admit when you are wrong or have made a mistake. You will be given great license to be creative in the work you do, and you’ll travel around the world and meet amazing advocates and researchers who are working to end the epidemic.

While there will certainly be bumps along the way, know that you’re not alone on this journey. Don’t be afraid to ask for help, and when you give back and help others along the way, you’ll get so much back in return.

The world will be very different in 30 years, but hope has sustained you this far, and so it will continue to do so. Don’t ever give up hope.

Take care of yourself.

Jeff Berry is the editor-in-chief of Positively Aware magazine, and Director of Publications at Test Positive Aware Network in Chicago. Find him on Twitter @PAEditor. This column is a project of Plus, Positively Aware, POZ, The Body and Q Syndicate, the LGBT wire service. Visit their websites â€“ http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com â€“ for the latest updates on HIV/AIDS.

By Toraje Heyward

How I contracted HIV is none of your damn business. I’m going to tell you what happened, but not because I owe you an explanation. Here goes.

My friend with benefits at the time casually suggested that he should get tested because he knew that he “messed around with several different people.” As he made this suggestion, it forced me to think on the last time that I was tested for HIV, which was a shaky “a year and some months ago.” The fact that I could not pinpoint the exact date of my last negative test result really bothered me, and the butterflies in my stomach began to swirl around like a storm. If thunder strikes, I thought, the lightning should be obvious to see. After all, I knew that with this particular partner, we always used a condom, and I couldn’t recall a “slip-up” of raw sex with any other partner within the last year within my memory. My body count (the number of partners a person has had sex with) was “average” in my opinion, based on a review of my peers’ social media posts that included both personal anecdotes and barebacking escapades with people they met online.

The friend with benefits, however, unintentionally saved my life.

“Your diagnosis is HIV positive” were the only words that resonated within me – everything else was a blur. I felt overwhelming relief and pain – I knew that something did not feel right with my body, but apprehension about knowing my health status with certainty manifested into feelings of silent despair. I had to be honest with myself. I knew that I was not proactively visiting health care providers to receive routine check-ups or following up with comprehensive services. I did not prioritize HIV and sexually transmitted infections (STI) testing every three months, because as long as I used a condom most of the time, I felt content. Even though I did not engage in any other behaviors like injecting drugs, there were some symptoms that I tried to overlook but could no longer.

My first defining moment was when I visited a female barber in Hampton, Georgia. While she was shaving the hair under my neck, she touched a swollen lymph node on my chin, and then my Adam’s apple. And then she felt it again. It was extremely tender to the touch. I felt and saw her facial expression change, as if she knew something that I didn’t. “You need to go get that checked” were the words that followed as she continued to cut my hair. I thought back to when I was hospitalized for proctitis, and the excruciating pain that felt like a thousand knives stabbing me in the stomach from every direction. Could the swollen lymph nodes have been related somehow? Some weeks after, I noticed that I also had swollen lymph nodes under my armpits, but that was dismissed as an adverse reaction to chemicals in the deodorant that I was using. These all were thoughts that raced through my head – I wanted to replay the situation in which the scenario could have resulted in a negative status instead.

The next day, I accepted my fate and my status. I took a photo of my results and threw the testing kit in the trash. At that moment, I chose life over death.

So when I tell you how I contracted HIV is none of your damn business, I don’t come from a place of arrogance or conceit. The disclosure of one’s health status is a privilege for some, and depending on what state you live in, can be a legal matter that brings jail time if someone says you didn’t disclose. Even if there are no official laws criminalizing HIV non-disclosure, people still face stigma and discrimination that can make it nearly impossible to talk about. Instead of focusing on the policing of marginalized bodies and values, efforts should be directed toward education, increasing access to health care for vulnerable communities, and eliminating problematic beliefs and stereotypes surrounding the HIV virus itself as well as the people living with it.

You shouldn’t feel compelled to ask someone living with HIV how they contracted the virus. If you are unaware of the various routes of transmission, a simple Google search can provide you with answers. If I have no intentions of being in a relationship with you, or if I do not have any inclinations to have sex with you, then why should my health status be any of your business? Would you ever ask a cancer survivor, “Did you get cancer from smoking too many cigarettes?”

From my experience, many people honestly feel that HIV is something that only promiscuous people receive as a punishment for their actions. Many people feel that if they live a “righteous” lifestyle, then they will be excused from becoming a host to the virus. Many people feel as long as they’re not one of those people – gay, transgender, promiscuous, etc. – they will be safe. You see, HIV does not define my dignity or character. HIV does not distinguish my humanity, nor can it verify the expression of my gender or sexuality. HIV is a virus that invades my immune cells in order to survive. But with the help of HIV treatment, I know that I can be a winner every day. I owe it to my loved ones, who are counting on me to thrive. I owe it to you, as you continue to live your story. You have a right to comprehensive care and education, but you are not entitled to the same access to my personal health.

If you are HIV positive, strive to find comprehensive care that suits your needs and identity, which includes antiretroviral therapy and mental health and any other related services needed to suppress your viral load and increase immune system health. Advocate for those who don’t have the same health care access, regardless of your status.

If you are HIV negative, discuss options and talk to your health care provider about pre-exposure prophylaxis (PrEP), a daily pill taken to prevent and control the spread of HIV.

If you are reading this and are still unaware of your HIV status, go get tested now.

Whatever you do after reading this, don’t ask the next person you meet who is living with HIV to tell you how they contracted it. e

Toraje Howard is a contributing writer for TheBody and a member of Engaging Communities Around HIV Organizing (ECHO), a leadership development program established by the sexual health advocacy organization Advocates for Youth. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBT wire service. Visit their websites – http://thebody.com, http://hivplusmag.com, http://positivelyaware.com and http://poz.com – for the latest updates on HIV/AIDS.

| Sure most HIV advocates have heard of U=U, but how do we get the rest of the world to listen?

By Desiree Guerrero

For about the past decade, activists and advocates have been working hard to educate the world on a very important scientific fact about living with HIV: that undetectable equals untransmittable (U=U). U=U is a now globally accepted scientific consensus that simply means when a person living with HIV reaches an undetectable viral load (also sometimes called virally suppressed) for six months or longer, they are virtually unable to transmit the virus to a sexual partner — even without the use of condoms.

Not only is this vital, life-changing information for those living with HIV, but certainly could be the key to ending HIV once and for all. Just think about it. If everyone on the planet currently living with HIV had access to today’s highly effective antiretroviral drugs that can quickly get you to undetectable — and were aware that being undetectable means they _cannot_ pass along the virus — would HIV continue to spread as it does?

Bruce Richman, executive director of the Prevention Access Campaign, says of course not. Richman has fought relentlessly for nearly a decade now to share this groundbreaking, stigma-shattering evidence. He founded the U=U consensus campaign after discovering the little-known science after fearing he’d exposed a partner to HIV around 2010. “I learned from my doctor that because I was undetectable, I couldn’t transmit HIV,†he told Plus magazine last year. “I couldn’t pass it on. I was elated!â€

His excitement soon turned to outrage when he realized “every HIV treatment site, media outlet, HIV/AIDS service organization, federal and state health department — just about everywhere — was saying that I was still a risk. And millions of people with HIV were still a risk.â€

“To clear up the confusion,†Richman added, “a group of us living with HIV collaborated with researchers on a [U=U] consensus statement and advocacy campaign.â€

The simple, catchy and game-changing U=U campaign launched in July 2016. Within record time, the campaign has become a global movement lead by people living with HIV. Today, 500 organizations from 65 countries have signed the U=U Consensus Statement, which has been translated into 15 different languages and is endorsed by the principal investigators of the leading studies that proved the statement true.

The biggest breakthroughs for U=U came when the U.S. Centers for Disease Control and Prevention (CDC) confirmed that the consensus was “backed by science.â€

Dr. Carrie Foote agrees and adds that U=U is also a human rights issue, as she recently stated at the Conference on Retroviruses and Opportunistic Infections (CROI 2019) in Seattle earlier this year: “All people living with HIV have a right to accurate information about their social, sexual and reproductive health.â€

Foote has been living with HIV since 1988, is a founding member of the U=U campaign and is an Associate Professor of Sociology in the School of Liberal Arts at Indiana University-Purdue.

“Stigma is killing us,†she added. “HIV stigma is a public health emergency and U=U is an immediate and effective response to begin to dismantle stigma.â€

Dr. Foote said that U=U is an incredibly significant finding, but this “amazing science†is not as well-known as it should be. Millions of people living with HIV are still unaware of the facts and implications of U=U and what it means for their lives. She says much of the responsibility lies in the medical community, which needs to keep patients informed about U=U as well as update their HIV-related brochures, fact sheets, and treatment guides to reflect this.

At CROI, Foote also shared some quotes from HIV-positive people from around the world, illustrating the impact of U=U. In the words of Mark from Baltimore: “When I finally internalized this message… something suddenly lifted off of me that is hard to describe. It was almost as if someone wiped me clean.â€

Desirée Guerrero is the associate editor of Plus magazine. This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service. Visit their websites – http://hivplusmag.com, http://positivelyaware.com, http://poz.com, and http://thebody.com – for the latest updates on HIV/AIDS.

| The Office of HIV and AIDS Malignancy at the National Cancer Institute coordinates cancer and HIV research.

By Oriol R. Gutierrez Jr.

Robert Yarchoan, MD, is the director of the Office of HIV and AIDS Malignancy (OHAM) at the National Cancer Institute (NCI). In addition, he is a researcher at the NCI Center for Cancer Research. He studies AIDS-related malignancies, especially tumors caused by Kaposi sarcoma–associated herpesvirus (KSHV), which causes several serious diseases. He also studies HIV protease.

Yarchoan was appointed as the first OHAM director in 2007. He has held several HIV-related positions throughout his career. He led the first clinical trials of the first effective therapies for HIV, including zidovudine (AZT), didanosine (ddI) and zalcitabine (ddC). He was a coinventor of ddI and ddC as AIDS therapies and led initial studies of combination therapy.

What is the mission of OHAM?

NCI has played a major role in AIDS research since the beginning, conducting research both in HIV and HIV malignancies. OHAM was established in 2007 to coordinate its AIDS research and also to run certain programs directly. Having OHAM as a central office has greatly helped NCI to optimize its use of AIDS research funds.

Of the many areas OHAM coordinates, let’s start with the consortia for HIV/AIDS research in low- and middle-income countries (LMIC).

Low- and middle-income countries, especially those in sub-Saharan Africa, have a disproportionate amount of HIV/AIDS malignancies. This is in part because more people in those areas have viruses responsible for many of the cancers associated with HIV, such as KSHV, the cause of Kaposi sarcoma (KS). OHAM started with grants to train investigators in sub-Saharan Africa to do research on malignancies associated with AIDS.

In the past few years, this effort has been expanded with a sort of hybrid grant that combines funding of research in LMIC along with training and building of research capacity.

We partner academic institutions in Africa—and, more recently, in Latin America—with U.S. institutions. People from the U.S. institutions often go to Africa and vice versa. The idea is that these countries can facilitate overall research in these cancers and also address issues of importance in LMIC.

Examples of recent studies include the molecular biology of KS and how to best screen for cervical cancer in countries with limited health resources.

Tell us about the AIDS Malignancy Consortium (AMC).

Established in 1995, AMC conducts treatment-related clinical studies in HIV/AIDS malignancies. For a number of years, AMC had sites only in the United States but has now established sites in Africa and, even more recently, in Latin and South America.

The U.S. sites were first in cities that were the initial focus of the AIDS epidemic, but they’re now opening new sites in areas where AIDS is advancing most.

At first, most of their studies involved AIDS-defining malignancies, particularly KS and lymphoma. They are now also focusing on non–AIDS-defining malignancies and on incidental cancers that appear in people living with HIV.

One major area of interest is anal cancer. The ANCHOR (Anal Cancer HSIL Outcomes Research) Trial is studying whether treatment of high-grade squamous intraepithelial lesion (HSIL), an anal cancer precursor, can prevent anal cancer and to assess treatment toxicities.

Participants with HSIL are randomized into two groups. Participants in one will be observed closely for anal cancer, while participants in the other will be treated for HSIL. If ANCHOR shows there is an overall advantage in treating HSIL, then this will provide a rationale for HSIL screening. Of the about 5,060 people they want to enroll, there are more than half accrued, so it’s going well so far.

One of the other things AMC has expertise in is looking at the interaction between AIDS drugs and cancer drugs. NCI has made a substantial effort recently to get people living with HIV into general cancer trials. By studying the interactions between new cancer drugs and HIV drugs, AMC can provide guidance to enable people living with HIV to participate in a variety of cancer trials and get access to promising new therapies.

Please describe the AIDS Cancer Specimen Resource (ACSR).

In the early ’90s, an NCI advisory committee noticed that a barrier to research was that scientists often had difficulty gaining access to samples of clinical material, such as tumor biopsies. NCI established ACSR to address this impediment.

ACSR collects tissues from people living with or at risk for HIV malignancies and then distributes them, without cost, to investigators. They have thousands of samples and have given them out to hundreds of investigators.

What are AIDS-defining versus non–AIDS-defining cancers?

When AIDS first appeared, the Centers for Disease Control and Prevention established a definition to include the people who had the disease and exclude others.

Persons were considered as having AIDS if they had a condition associated with immunodeficiency but no known cause of it. First KS and then certain aggressive lymphomas were considered AIDS-defining cancers. During those early years, many people with AIDS developed and died from these rare tumors. Cervical cancer was then added to the list.

Effective treatment prevented or reversed immunodeficiency in people with HIV. They developed fewer AIDS-defining tumors. People lived longer and developed other tumors not clearly associated with immunodeficiency, such as anal cancer or Hodgkin lymphoma.

These are non–AIDS-defining HIV-associated cancers. People living with HIV can also develop incidental cancers unrelated to HIV. The good news is that those who have the virus are living much longer, but cancer is still a major concern.

What can we do to prevent cancer?

The most important step is to take effective treatment for HIV. Also, individuals who smoke should quit or reduce their smoking. Maintaining a good weight, exercising, avoiding sun exposure and excess alcohol, and eating a healthy diet can reduce the risk of certain cancers.
They should also get recommended screening for cervical and anal cancer. They should make sure they are vaccinated against hepatitis B, and treat hepatitis B and/or C if present.
HIV-positive individuals should discuss with their physicians whether they may benefit from the HPV vaccine and, if they are or have been smokers, whether to get screened for lung cancer. They should also discuss getting age-appropriate screening for colon and breast cancer.

Finally, they should be aware that KSHV, the virus that causes KS, is excreted in saliva, so avoiding the use of saliva as a sexual lubricant may lower the risk of getting KSHV and developing KS.

What’s ahead for cancer and HIV?

A lot of basic research and observations are being translated into better therapies. For example, research in immune therapy for cancer has recently exploded. Novel immune therapies, such as checkpoint inhibitors, are now yielding remarkable results in tumors that were previously felt to be untreatable by enabling the person’s immune system to fight the cancer.

People questioned if these therapies would work in those with HIV. Clinical trials now under way are looking at this issue. There are other advances occurring in oncology that can benefit those with HIV who have or are at risk for cancer.
I encourage HIV-positive people with cancer to consider participating in clinical trials, such as those run by AMC or by NCI at the Clinical Center in Bethesda, Maryland. By doing so, people can gain access to promising experimental therapies and to physicians with expertise and interest in HIV malignancies. At the same time, they can help others.

Oriol R. Gutierrez Jr. is the editor-in-chief of POZ magazine. Find him on Twitter @oriolgutierrez. This column is a project of Plus, Positively Aware, POZ, The Body and Q Syndicate, the LGBT wire service. Visit their websites — http://hivplusmag.com, http://positivelyaware.com, http://poz.com, and http://thebody.com — for the latest updates on HIV/AIDS.

By Theo Smart

When the dashing and magnificently bearded Dr. Giovanni Guaraldi took to the stage at last fall’s HIV and Aging conference in New York City, and described a nearly 100-year-old person living with HIV, I was more than a bit skeptical. Not of the researcher—he’s done some of the most brilliant research on aging with HIV. Guaraldi also advocates a “rethink†of care services provided for people living with HIV as we age, particularly now that about half of us are over 50—and by 2030, as many as 40 percent of us will have reached the age of 65.

Rather than our routine HIV care, we increasingly need comprehensive multidisciplinary services to match our more complex needs. Even in middle age, we need a more aggressive approach to screening, diagnosis, and management of many conditions associated with aging.
The firebrand activist Jules Levin of the National AIDS Treatment Advocacy Project (NATAP) has been broadcasting this message for years now—sounding the alarm that we, the aging HIV community, are headed for a services gap. Based upon study after study documenting rates of frailty, aging-related complications, and disability among people living with HIV that are much higher than what is seen in people of the same chronological age in the general population, he believes that HIV care systems are totally unprepared to provide the services many of us will need.

His warnings seem to be falling on deaf ears, due at least partly to ageism and denial. People don’t like to think about all the ailments associated with “growing old.†Quite possibly, there is some measure of survivor’s guilt as well. After all, when we received our diagnoses, many of us never expected to even make it to 50 (with the exception of a growing number of us who weren’t diagnosed until later in life). We’re still kicking—why should we be complaining about the natural aging process?.

But it does not seem to be entirely natural. First, there’s all the damage that HIV does to the body: our brain, our gut, our other organs such as the heart and the immune system—both before we can get onto treatment, and then due to chronic inflammation caused by low levels of ongoing replication, co-infections (such as CMV and hepatitis), and other factors. In addition, the long-term survivors among us are often dealing with the legacy effects of the older, more toxic antiretrovirals. Even the new ones have side effects, some of them insidious, subtly altering our metabolism and even damaging our mitochondria—the energy generators of our cells. On top of that, many of us have had rough lives emotionally, punctuated by loss, dealing with structural inequalities and bias, internalized stigma, and depression. Consequently, we haven’t always taken the best care of ourselves, and some of our lifestyle habits are self-destructive.

It’s no wonder that many of us are showing more wear and tear than is usual for our age. In fact, several years back, Dr. Guaraldi published a study showing many of the complications of aging seemed to be happening 10–15 years early in people living with HIV.

That said, other studies have shown that many going to the larger HIV clinics and on the current antiretrovirals do pretty well compared to other middle-aged people, at least over the short term. And there’s a good explanation for this—simply being in routine care may allow well-trained clinicians to detect problems early and nip them in the bud.

Which brings me back to this 99-year-old gentleman from Lisbon, Portugal. My initial instinct was to dismiss him as an anomaly. A case of one. But the more I thought about it, it was not so simple. He was very ill when he was diagnosed at the age of 84—very late, with a nadir CD4 count below 100—but recovered and seems to have flourished with good attentive care. There’s a good report on him online (bit.ly/99-year-old), with a cute video clip of Dr. Guaraldi at bit.ly/Guaraldi-clip.

At the HIV and aging conference, Dr. Guaraldi identified factors that could help explain why this man has done so well. First, he lives in a healthy environment. He’s never had financial difficulties (and the related stress), and he has assistance from a loving 70-year-old daughter who lives next door. Then there’s that Mediterranean lifestyle and diet, with good cardio every day walking up and down the hills of Lisbon, and, I would imagine, plenty of olives and fish.

Dr. Guaraldi referred to these factors collectively as “social protection,†which based upon his research in a larger HIV-positive cohort, might be used to help predict which people might be at greater risk of frailty and age-related illness. But lest one think that such outcomes might be limited to those lucky enough to live in Portugal, another study presented by Dr. Nancy Mayo of McGill University at the HIV and Aging conference found similar factors associated with “aging well†in a cohort of over 800 Canadians living with HIV. Looking specifically at frailty, the study found that some health conditions greatly increased the risk, such as having lung disease, arthritis, or cognitive problems.

But about 14 percent of the cohort seemed to be aging particularly well. Among modifiable factors associated with greater resilience were being physically active, not smoking, not suffering from stigma, having friends and family (not being lonely), and keeping mentally fit.

“You have a big role in how you are going to age,†Dr. Todd Brown of Johns Hopkins University said at another meeting organized by NATAP’s Jules Levin last fall in New York, in a talk emphasizing what people could do for themselves to build resilience and to maintain a good quality of life as they age. I, for one, would be happy to live in good health well into my 70s and later, as my older siblings are doing. In my own life, I’ve seen how changing my diet and losing a significant amount of weight has profoundly improved my quality of health—and even my concentration.

Building resilience is something we have to do both on a personal level but also in our communities and in our health systems.
At the personal level, now is not the time to be burying our heads in the sand. Knowledge is power. Many of us will recall how, back before antiretrovirals made HIV into a chronic manageable condition, we had to learn all about the various opportunistic infections and drug development—often becoming more aware of the scientific research than our own doctors. This issue takes that approach, reviewing what is currently known about the health risks we face—we need to know what our health care providers should be watching for, and what steps we can take to improve the way we age.

One of the challenges is that access to quality care for aging people with HIV is uneven in this country. There is a lack of trained skilled providers and services prepared to deal with the consequences of these complications and health emergencies in this population. Many of our HIV clinicians simply aren’t trained in the nuances of providing care for people who are aging, and it can be extremely difficult to get timely referrals to a specialist when we need one. Efforts are underway to address the services gap that requires our communities’ full support (see “Addressing the Needs of Older Adults Living with HIV†in the Spring 2019 issue of Positively Aware).

For many of us, the care we receive is limited by what Medicaid or our insurance plans will cover—and this needs to be as much a part of our national activist agenda as the current efforts around prevention. We can also build resilience for aging well into the health system and communities through our activism. We also focus on a few of the activists who are each responding in their own way to scale up research and improve the service package and psychosocial support for our communities—and to improve elder care in general.

“It’s not just HIV. We don’t take care of our older people and that is a problem across the country and many parts of the world,†said Dr. David Wohl of the University of North Carolina at NATAP’s forum. “The problems with age transcend any one disease. But HIV is really unique in many ways. HIV and the epidemic forced the FDA to think harder and differently about how to approve drugs. The epidemic helped us think about how, as communities, to organize to push politicians and policy makers to push drug companies to do the things they ought to do. There are many examples in medicine where HIV has leapfrogged us and helped other disease states. And maybe it is HIV that can help us revolutionize geriatrics because we need a different model for how we take care of, and how we consider, older people. We can do that. We are the tip of the spear.â€

Theo Smart is a contributing writer for Positively Aware; this article first appeared in the Spring 2019 issue of the magazine. This column is a project of Plus, Positively Aware, POZ, TheBody and Q Syndicate, the LGBT wire service. Visit their websites – http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com – for the latest updates on HIV/AIDS.

| How drag queens are becoming the heroes of HIV prevention

By Desiree Guerrero

My love affair with drag queens goes way back. Since my childhood in the suburbs of East L.A. (an area noticeably lacking in glitz and glamour), I have been fascinated with these magical creatures. My first glimpses of queens were on daytime talk – which, in the pre-internet ’80s, was also my only window into “the real world†that existed beyond my ’hood. _Geraldo_ would have the club kids on, and on _The Jenny Jones Show_ and _Ricki Lake_, my beloved queens. (I made sure to scour the TV guide daily for such appearances.)

Part of my devotion is due to the fact that – aside from the pure fun, fantasy and escapism that drag queens have to offer – drag queens often bring hard-earned wisdom, strength, love, empathy and support, especially for the LGBTQ+ community. And many queens have used their platforms for good, both literally and figuratively. These hardworking performers, most often gay men but sometimes trans women, are also often fierce activists speaking out on bullying and suicide prevention, transgender awareness, marriage equality, substance dependence, and HIV awareness and prevention.

Of course when the ’90s hit, along with RuPaul and his 1993 album _Supermodel of the World_, my drag curiosity had become a full-blown obsession – and now I had a Queen Motha to worship. Of course, I’ve gone on to become a fan of _RuPaul’s Drag Race_ (though I admit I feel a vague sense of resentment toward all you Johnny-come-lately fans). One of the most amazing and powerful aspects of the show is its ability to bridge gaps that would not otherwise seem traversable. Not only have many estranged familial relationships been healed through the series, but it has also been instrumental in increasing HIV awareness among both queer and straight audiences. 

Famously in season one, petite and bubbly queen Ongina (Ryan Palao) disclosed his poz status after winning a challenge in which contestants created their own HIV awareness PSA. Though in its fledging season on Logo, the show was not nearly to its current level of viewership, the moment was historic. Palao was one of the first people since Pedro Zamora (_The Real World_, season 3) to come out HIV-positive on reality TV and helped reignite the conversation in the new millennium.

And that was just the beginning. Since June of last year, the show has started showing Truvada ads, Gilead’s branded PrEP treatment, which features gay men and cis and trans women of color. In case you haven’t heard, PrEP (pre-exposure prophylaxis) is a highly effective HIV prevention pill. If taken daily, Truvada can be up to 99 percent effective in preventing HIV transmission. With the show’s now-massive VH1 audience, this could easily become one of the most effective PrEP campaigns to date.

In addition, season eight winner, Bob the Drag Queen, has become a major PrEP ambassador. Shortly after taking the crown, Queen Bob (aka Christopher Caldwell) was quick to use his new national platform to increase PrEP awareness with an educational _and_ entertaining video. “I have three goals: to give back to the community, [support the] children, and make people laugh,†he told The Advocate at the time. “Now that I’m America’s Next Drag Superstar… I’m not gonna stop being political.”

As effective as things like national ads and star-power are, sometimes our local queens are the ones bringing PrEP awareness to where it’s needed most – in the club. 

Astoria, N.Y. queen Gilda Wabbit, who incorporates PrEP awareness into her live shows, told the The Advocate last summer that the stigma of the “Truvada whore†label is “real and damaging. It is sex-negative, cruel, and discourages safer-sex practices. I understand the fear… but my friends who [use PrEP] are tested more often and are more informed about their sexual health than any people I’ve met before.â€

So the moral of the story? Listen to a drag queen. It just may save your life – or at least your health.

Desirée Guerrero is the associate editor of Plus magazine. This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service. Visit their websites â€“http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com â€“for the latest updates on HIV/AIDS. For more information about the National AIDS Memorial Grove and the Pedro Zamora Young Leaders Scholarship, visit AidsMemorial.org.

|That Has to Change

By Tyunique Nelson

As a young person who identifies as nonbinary, meaning I do not identify within the gender binary, accessing pre-exposure prophylaxis (PrEP) was a challenging quest. PrEP is a once-daily pill regimen that supports people in remaining HIV negative. Although I have been an organizer and advocate in support of LGBTQ youth for over five years in Philadelphia, I have only been aware of PrEP for about two years. 

PrEP is extremely effective at preventing HIV transmission. So why is no one talking about it to young people?

In 2016, 21% of people newly diagnosed with HIV were age 24 or younger (about 40% of HIV diagnoses are in people under 30), and yet people under 25 were only 15% of all people on PrEP. There have only been approximately 27,000 prescriptions issued to this group since 2012. A recent report from the Centers for Disease Control and Prevention on how PrEP is prescribed found that black and Hispanic/Latinx people are most likely to benefit from PrEP, but least likely to be prescribed it.

Truvada (FTC/tenofovir disoproxil fumarate) for PrEP was first approved as an HIV prevention method in 2012, but only for individuals age 18 and older. In 2018, the Food and Drug Administration expanded the approval of PrEP to include adolescents. But there are still too many logistical, economic and cultural barriers to young people receiving this vital medication.

One key barrier and area of missed opportunity is the doctor’s office. Unfortunately, like many LGBTQ people, until recently I never felt like my doctor’s office was a safe place to openly talk about my sexual health and experiences. I often felt like I was being slut-shamed or othered for my identity and the partners I had. I answered the standard questions about sexual behavior, but these didn’t create an opportunity to ask about PrEP. No one offered it to me, and I wasn’t sure if it was my job to ask for it. I’d go to my appointments and end up leaving without a PrEP prescription because I was afraid to ask my doctor about it.

Then there’s the price tag. Without insurance, PrEP can cost up to $2,000 per month. A young person on their parents’ insurance pays far less but faces the risk of their parents finding out they’re on PrEP if their explanation of benefits goes to their parents. Title X clinics, like Planned Parenthood, provide cost-effective and confidential options, but the Trump Administration is intent on shutting them down, without regard for the vital services they provide young people.

There’s also a huge gap in comprehensive sex education. Today, fewer than half of all states mandate medically accurate sex and HIV education. In Pennsylvania, schools are required only to provide education on HIV and AIDS, with a focus on abstinence. The Philadelphia School District (where I live) provides teachers with additional information on contraception and dating violence but fails to require any specific curriculum. Unfortunately, what students learn can vary greatly depending on the teacher. It’s unforgivable that most students get through school without learning that there is a medication that can help them remain HIV negative.

I’m asking everyone to take the steps they can to ensure young people have access to PrEP. In hospital and clinic settings, sexually transmitted infection screenings have to go beyond the standard of offering condoms, lubrication and dental dams after a person is tested. Information about PrEP and post-exposure prophylaxis should be publicly promoted in health care environments and spaces that LGBTQ youth, people that identify as nonbinary, and black cis and transgender women occupy. Sex education needs to be honest and comprehensive, and it needs to address real solutions and skills. And young people ourselves need to take the initiative and ask our health care providers about PrEP.

It was only after I met an affirming nurse at Planned Parenthood, who happened to be queer, that I became comfortable discussing my sexual health and HIV prevention needs, including PrEP. When young people are educated about PrEP, when staff and physicians are knowledgeable about LGBTQ-competent services and provide equitable and affordable care, we are empowered to take our sexual health into our own hands. Help us protect our futures and lay the groundwork for a lifetime of sexual health.

Tyunique Nelson is a contributing writer for TheBody, a member of Advocates for Youth’s YouthResource Leadership Program, and a program associate at the Mazzoni Center in Philadelphia. This column is a project of Plus, Positively Aware, POZ, TheBody and Q Syndicate, the LGBT wire service. Visit their websites –http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com –for the latest updates on HIV/AIDS

By Michael Lamb

The day the universe decided it wanted to see sugar, spice and everything nice, it was June 10, 1991 – the day I was born. Even as a child, I was always talkative and quite the jokester. Winning “Loudest,” “Class Clown,” and “Most Likely to Work for The New York Times” my senior year of high school proved not only that I could make anyone laugh, but that my banter always led to greater conversation.

Taboo topics have always been my favorite conversation-starters. Whenever the topic of HIV/AIDS came up, I was the smartest man alive. “Only crackheads, hookers and people who shoot up get HIV,” and “You can tell who got that shit because they look sick,” were two sentences I remember proudly stating. That wasn’t the same energy I had when I was diagnosed with HIV on Dec. 19, 2012.

I was the average 21-year-old white gay man. Living it up, partying every weekend, experimenting with drugs, and of course having plenty of sex. Man, I knew the pathway to my walk of shame backwards and with my eyes closed, strutting every step of the way while my hips said, “Yes ma’am,” with every sway.

I became an advocate for HIV awareness after living with the virus for two years. Stigma led me to my reactive test, and stigma caused me to bury a friend who died due to complications from AIDS in 2014. “I could’ve sworn my doctor said the medicine nowadays keeps people living longer! Why is my friend dead?” I thought to myself as the casket closed.

When I first heard of my friend’s passing, I was shocked. Growing up in Fort Myers, Florida, I’ve lost many friends to gun and gang violence. I knew for a fact my friend wasn’t a gangbanger. After I reached out to his sister, she was basically shocked at my emotional outcry for answers, responding, “Boy, you didn’t know he had AIDS?” I was in shock. How could we have both been diagnosed with the virus, but he’s dead and I’m alive? Oh yeah, he was black.

I’m not trying to sound curt or insensitive, but that was the only difference between us. Both gay men living in Florida, under 25 at the time, we had the same “risk behaviors.” Our skin tones separated us like water fountains in the 1960s separated our parents. Yes, the civil rights movement wasn’t that long ago. It hadn’t dawned on me yet that there are racial and systemic barriers surrounding black gay men diagnosed with HIV – at least not until I had to bury two more black gay men in white caskets, in 2016 and 2017. Black gay men are dying in the “better days of the epidemic.” This is news to some, but a reality to many.

Where I’m from, I was often the only white person, or one of five white people, in black-dominated spaces. My mother owned a daycare on Evans Avenue. She and another gentleman were the only white people who owned businesses in that area. All her employees and students were black. As the years went on, those employees became family. I have so many aunties because of that place. My mother was finishing school, going through a terrible divorce, and running a business, so naturally her time was spread thin. She trusted black women to look after her white children. My mother didn’t raise us on “don’t see color” – she raised us on, “Treat good people better than the world does, because the world will turn good people bad.”

When I entered the world of HIV advocacy, I jumped in headfirst, wanting everyone to know their status, but I wasn’t yet hip to the fact that knowing your status and navigating the health care system once HIV positive is not the same. From inner community stigma, culture differences, racism, lack of health literacy or cultural competency, and the “one size fits all” messaging at play in the HIV nonprofit world, it’s no wonder black and brown bodies fall through the cracks of what is supposed to be the glory days.

You would think after the Centers for Disease Control and Prevention released statistics showing that black gay and bisexual men have a one in two chance of contracting HIV in their lifetime before age 40 that there would be plenty of space, education, marketing materials and representation for black leadership roles to open up to spread awareness of testing, access to pre-exposure prophylaxis (PrEP), sexual health and navigation to care if diagnosed. Nope. Not at all.

I remember working for an organization that whenever they had any need for anything to do with black people, I was their go-to man. Why? Because I had black friends. I remember my boss even saying, “I need a gay, black, HIV-positive man to hire as a prevention specialist. Can you think of any of your friends that would want a job?” He wanted to hire my gay, black, HIV-positive friends, but when I wore a Black Lives Matter shirt to work, I was asked to change, because “my politics aren’t the same as everyone else’s.” He wanted a gay, black, HIV-positive man to work for him, but the only time we ever went to a neighborhood that was predominantly black was for National Black HIV/AIDS Awareness Day. I took this kind of tokenizing as a spit in the face, and a piss on the graves of my three friends.

It’s at moments like this that the voice of South African Nobel Peace Prize winner Desmond Tutu rings in my ears: “If you are neutral in situations of injustice, then you have chosen the side of the oppressor.” I couldn’t live with myself allowing my black friends to become nothing but a quota to fill for a snowcap organization to gain funding. As a gay white man, I don’t know oppression like a gay black man, nor will I ever know. Many times, I have challenged my white peers, colleagues and fellow advocates to first have a conversation surrounding the experience of their black counterparts living with HIV and to see the role they themselves have played that contributed to the oppression of their friends, colleagues, clients and employees. White folks with badges aren’t the only ones helping kill black folks – it’s the white folks in lab coats too.

White people who claim to “get it” and wave their allyship to black folks are the worst. Trust me, I was one of them. Always trying to prove myself to black people, explain racism to black people, and basically telling black people how to be black. Yep, I was your typical white gay. Not only was I singing to the wrong choir, I was totally singing off key.

If it weren’t for black leaders, including Maxx Boykin, Larry Scott-Walker, David Malebranche and Phill Wilson – who taught me to check my privilege at the door and told me certain spaces were for black folks only, black folks are a priority to black people, and my presence or my voice wasn’t needed at the time – I’d still be stuck in my old ways. I can’t thank them enough. I’d be lying if I didn’t say the lesson was a hard one to learn, sometimes with tears emanating from my own white fragility. But it helped me be a better person, a better white person.

“Nothing about us without us,” said Larry Scott-Walker at the 2018 United States Conference on AIDS, as his beautiful locs hung like wind chimes down his broad back. Usually, in the HIV community, this expression is used to speak to the need to keep people living with HIV at the center of all decision-making about prevention, treatment programs and policymaking. But in that moment in Orlando this past September, I interpreted Larry’s call as, “No discussions about the betterment of black people are to be had at the table without black people at the table.” Period.

This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service. Visit their websites – http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com – for the latest updates on HIV/AIDS.

HIV-positive millennial Michael “Miss Mikey” Lamb is a contributor to TheBody.com, as well as an author, life coach, and empowerment speaker — but none of his titles hold greater weight to him than “Cousin Mike.” He blogs at www.getchalifewithmike.com.