Living with HIV/AIDS

A Mediaplanet Guide to HIV and Healthcare

Living With HIV/AIDS

Gabe Bertaccini Netflix star Chef Gabe gets personal about living with HIV and inspiring others

Learn how women living with HIV can safely start a family When is HIV no longer sexually transmittable?

DECEMBER 2020 | FUTUREOFPERSONALHEALTH.COM

If you’re living with HIV...

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People Living With HIV Are Aging, Too People with HIV are aging. Now, besides HIV-related care, we need to think about (and adjust to) age-related issues, too.

I am a long-term survivor of HIV. Having acquired the virus during the early years of the epidemic, I am fortunate to still be here when so many I knew and loved are gone.

I am alive and healthy today because of the many advances in treatment. I am not alone. Right now, more than 50 percent of the people living with HIV in the United States are over 50 years old, and that number will grow to 70 percent by 2030.

We need to start preparing for that now to ensure that our systems can support all of us aging with HIV. In 2019, AIDS United conducted a survey of longterm survivors. Respondents reported difficulties accessing and maintaining healthcare. Many experienced challenges managing their HIV care alongside other health conditions common with aging. Too many respondents said their needs are given little attention or are ignored altogether.

They described gaps in health professionals’ knowledge and experience about aging with HIV. These are coupled with anxiety about the future, loneliness, and long-term nursing care.

So, what can we do?

First, we must share our stories and reach out to each other because our resilience is strongest when we work as a community.

Then, we must advocate for policies that support people aging with HIV while also dismantling systems like racism, homophobia, and transphobia that target so many of us most impacted by HIV. COVID-19 disproportionately impacts seniors, and there are many seniors living with HIV, so finding a vaccine and a cure is a top priority.

Even in grief, exhaustion, and anger, I believe the HIV epidemic will end in my lifetime.

It is within our grasp. I am here and I am healthy — and so are thousands of long-term survivors across our nation. We need your support. Because we, like you, are aging.

Jesse Milan Jr., J.D., President and CEO, AIDS United

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Momentum Against HIV in America The tide is finally turning against the HIV epidemic in the United States. However, this isn’t the time to stop.

We can still do more.

In a sign of hope for efforts against HIV, new Centers for Disease Control and Prevention (CDC) data show that the rate of HIV-related deaths in the United States fell by nearly half between 2010 and 2017. In 2017, 16,358 people with HIV died, but only 5,534 of those deaths were attributed to HIV-related causes.

Disparities in HIV-related death rates also declined: Although African Americans still had a higher death rate, the absolute gap between African Americans and whites fell by two-thirds, and by 2017 the HIV-related death rates for Hispanics/Latinos and whites were the same.

Much of this progress likely resulted from diagnosing people with HIV sooner and helping them to get —

and stay on — lifesaving treatment. CDC and other federal agencies have played a role in this by supporting numerous activities for identifying HIV infections, initiating treatment as quickly as possible, and ensuring ongoing access to care. From 2010 to 2018, the share of people with diagnosed HIV who had a suppressed viral load (a measure of the amount of HIV in a person’s blood) increased from 46 percent to nearly 65 percent.

This is critical because people with HIV who have an undetectable viral load live longer, healthier lives, and have effectively no risk of sexually transmitting HIV. Keep the momentum Our job is far from done, though. We should continue to reduce, and ultimately eliminate, racial, ethnic, and other disparities in the incidence of new HIV infections, viral suppression, and mortality. It is unacceptable that thousands still die from HIV every year when effective

treatment makes a normal lifespan possible.

That’s why the federal Ending the HIV Epidemic initiative is so important. Launched last year, the initiative aims to reduce new HIV infections by at least 90 percent by 2030.

Through this initiative, CDC and other federal agencies are providing new resources to expand HIV prevention and treatment efforts where they’re needed most.

While COVID-19 has created new challenges, it hasn’t weakened our resolve to bring a swift end to the HIV epidemic. CDC-funded programs, including health departments and community-based organizations, have quickly adapted to this new environment — for example, by expanding the use of telemedicine and HIV self-tests. If we continue to adapt and build on what works, we will finally end the HIV epidemic. n Jonathan Mermin, M.D., M.P.H., Director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention

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PHOTO: COURTESY OF NELSON VERGEL

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We take a deeper look at Nelson Vergel’s experience with Trogarzo®, an infused treatment for HIV. This is the experience of one patient and may not be representative of all Trogarzo® patients.

TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat HIV-1 infection in adults who have received anti-HIV-1 regimens in the past, and have HIV-1 virus that is resistant to antiretroviral medicines who are failing their current antiretroviral therapy. Please find complete safety information at the end of the article. For more information about Trogarzo® visit Trogarzo.com.

Hi Nelson, could you introduce yourself?

My name is Nelson Vergel, and I live in Houston. I have been HIV-positive for over 34 years. I have been a long-term survivor.

I am also a long-term HIV activist and patient.

What has your HIV journey been like?

Well, most of us with HIV that have been long-term survivors are long-term survivors for a reason.

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For some, it is luck, but for most of us, it is because we are exercising, trying to eat well, and trying to manage stress.

Most long-term survivors have been positive for over 25 years and have developed many resilience skills.

And I’m one of them. Ever since I found out that I was HIV-positive when I was in my early twenties, I started to exercise. I knew I was in control of that and of eating better and trying to avoid unintentional weight loss. That helped me live a better life, but with a detectable viral load, I knew there was nothing I could do back then to avoid eventually getting sick and dying.

Would you tell us more about how you eventually started treatment with Trogarzo (ibalizumab-uiyk)?

My doctor told me there was a new option in a study. I needed a new option because I was struggling with getting my viral load undetectable for 27 years, and my T cells were already dropping. I was in constant worry, so I jumped at the opportunity.

I started Trogarzo six-and-ahalf years ago, as part of a Phase 2b study, here in Houston.

I’m the director of a nonprofit called Program for Wellness Res-

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Inside One Patient’s Experience With TROGARZO® — An Infused Treatment for HIV toration, and I lectured around the country every week about health. I was the only one, or one of the few, in the room that was still worrying about viral load. So that was the irony of everything.

I was taking care of myself by taking all my pills. I never had a problem with adherence, and yet I was struggling still with controlling my viral load. I was one of those patients who had joined several HIV studies only to develop resistance to the study drug because they would give us one new one at a time. We now know that we need 2-3 active agents to control our virus.

I had the luck of having two other active agents that could be combined with Trogarzo.

That regimen did it.

Within two months, for the first time I had an undetectable viral load. I didn’t believe it at first because you never know, it’s always like: “Well, how long is this going to last? And don’t get too cocky!” So you get excited, but not really.

But as months went by, I started feeling more secure that maybe I wasn’t going to die of this thing and now we’re talking six-and-a-half years, and I’m like: “Wow!” My life has changed dramatically because, for the first time, I have had an undetectable HIV viral load for over six years now.

I was able to restart my life again. I had put my life on hold for easily 27 years doing some nonprofit work, educational work, but now I am running two businesses plus my nonprofit. I don’t have that anxiety that I used to have; I had constant daily worry about what was going to hit me next.

Trogarzo gave me that peace of mind.

Tell us a bit about Trogarzo.

It is a monoclonal antibody, very different from all the oral medications. It’s the first long-acting medication that lasts long in the body.

The big difference about Trogarzo is the fact that it is a new class of medication. Actually, it works on a receptor on the CD4 cell.

It’s not a drug that works by itself; no HIV drugs do — it needs a combination of other active agents.

I get it via IV every two weeks.

I have done this 156 times which hasn’t been a problem for me. It doesn’t hurt really. When the drug goes through your veins, it’s like saline. I do not feel any difference. I never had a bruise.

[I have not experienced] side effects. Basically, the drug is like saline with no gut side effects, no fatigue, no flushing, nothing! (Experience may vary from patient to patient, please read

complete safety information at the end of the interview, the most common side effects of TROGARZO® include diarrhea, dizziness, nausea, and rash).

I am willing to keep [taking] this drug until I die because it is keeping me here and healthy.

I am working out. I take care of myself. But nothing you do while you have a detectable viral load will really save your life.

You can delay your death, but only [by] controlling your virus, and taking care of yourself can save your life.

As an activist, I follow this field very closely. I was thrilled to see this drug finally approved. I want people to have access to it because it changed my health; it changed my outlook on life.

What are the benefits for the patient in its daily life?

Well, for me, the most significant benefit, the biggest change in my life is removing the fear of death.

I know everybody is afraid to die, the HIV negative, positive, cancer, or not or whatever. But we have a daily conscious presence of death and illness in HIV when our viral load is not undetectable.

All of us, I’ve been around for so many years as an activist, as an educator, and all of us, when the viral load is not undetectable, we all have this anxiety inside. Some

of us suppress it, some of us don’t.

Some of us live with this anxiety and depression.

Once you get a new drug like Trogarzo, you remove that anxiety and then people — like me — start being productive and happier. If you are not worrying so much about being sick, you have a lot more time. I have a lot more time to spend, to be present with my family, and develop relationships.

Say that you’ve always had this fear and then after a few months of having an undetectable viral load, you realize “Oh my god, I have this much free mental space to do a feast with my life rather than worrying about my next illness, my next challenge.”

I’m looking forward to the day when all patients like me know all of their options and can make their own choices.

Can you walk us through how you integrate Trogarzo into your routine?

Every two weeks, I leave the house at around 10:15. I have my appointment at 11. They call me in and by 11:30 I’m gone. I’m going back home to work.

It takes an hour-and-a-half of my time every two weeks.

That’s a very low price to pay for surviving!

I am able to see my doctor more frequently [Trogarzo’s dosing schedule requires an infusion every two weeks], and that actually has a lot of advantages as you get even better care. Even when you have the flu or cold you get medication faster and treatment faster because you see your doctor or nurse more frequently.

The only thing that may be a problem is traveling overseas for more than two weeks, [as I need] to get my infusion on [schedule], but I have managed over six-and-a-half years. I have traveled. I take 13-day vacations, and that’s fine.

What would you say to somebody who is hesitating to prescribe or take that treatment?

Well, some physicians may have some reservations about prescribing a medication that is provided by intravenous administration because they assume that a patient may not like it or that it may be too much trouble.

But I think those are assumptions and you have to be careful because some of us, we want to be asked.

So, all of us as patients, we deserve to be provided all the options and allow us to make the decision. A physician should not be deciding for us when it comes to assuming that an IV is too much trouble — ask us.

Most patients want to live.

Most patients don’t want to worry about their health. So, when there’s an option that can do that, in combination with other active agents, then we should be provided the option. It’s up to us whether to say yes or no.

What advice do you have for people struggling to identify the right regimen to control the virus?

I would say do not give up.

Talk to your doctor about all HIV treatment options including ones that are not taken by mouth. To achieve undetectable viral load, remember that we need at least two HIV medications that our virus has not developed resistance to.

Ask your doctor to show and explain your genotype test results. You are not alone; join online HIV communities like pozhealth (send an email to pozhealth+subscribe@groups. io or look for pozhealth on Facebook) where you will be able to chat with others who have conquered HIV multi-drug resistance. Even if you have no

insurance or limited medication coverage, there is help out there!

What advice do you have for dealing with stress when managing a life-long disease, and has the pandemic changed your approach?

Worrying about your health every day is not an easy thing to do. Talk to others going through the same issues that you are going through; you are not alone.

Try to do things you enjoy to get your mind off thoughts that you worry about. Isolation is a very dangerous thing to go through, especially through the COVID pandemic. Go for a daily walk, exercise, try to get enough sleep, listen to music, join online communities, and try to avoid the negative energy that is surrounding us every day in the media.

Last but not least, reach out to your local HIV organizations if you are concerned that you may not be getting the best care you need. Switching doctors may seem hard to do, but it can be life-saving if your current doctor does not seem to listen to you.

Are there new, COVID-specific worries and challenges for those living with HIV? Several studies have shown that the incidence of depression and anxiety may be higher for those of us living with HIV. COVID and the current political situation in our and other countries have made this worse. We need to find ways to reach out to others even through social distancing to avoid the isolation that may push us into low mood and despair. n 936-01-11/20

For more information about Trogarzo® go to Trogarzo.com.

IMPORTANT SAFETY INFORMATION What is TROGARZO®?

TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to antiretroviral medicines, and • who are failing their current antiretroviral therapy It is not known if TROGARZO® is safe and effective in children.

Do not receive TROGARZO® if you have had an allergic reaction to TROGARZO® or any of the ingredients in TROGARZO®.

TROGARZO® can cause serious side effects, including: • Allergic reactions. TROGARZO® can cause allergic reactions, including serious reactions, during and after infusion. Tell your healthcare provider or nurse, or get medical help right away if you get any of the following symptoms of an allergic reaction: o trouble breathing o cough o swelling in your throat o hot flush o wheezing o nausea o chest pain o vomiting o chest tightness • Changes in your immune system (Immune Reconstitution Inflammatory Syndrome) can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your health care provider right away if you start having new symptoms after receiving TROGARZO®.

The most common side effects of TROGARZO® include diarrhea, dizziness, nausea, and rash. These are not all the possible side effects of TROGARZO®.

Before you receive TROGARZO®, tell your healthcare provider about all of your medical conditions, including if you are: • Pregnant or plan to become pregnant. It is not known if TROGARZO® may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO®.

• Breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Do not breastfeed if you are receiving TROGARZO® as it is not known if TROGARZO® passes into breast milk. Talk with your healthcare provider about the best way to feed your baby during treatment with TROGARZO®.

Also, tell your healthcare provider about all the medicines you take, including prescription and over-thecounter medicines, vitamins, and herbal supplements.

For more information or medical advice about side effects, ask your healthcare provider. You may report side effects to the FDA at 1-800-FDA-1088 or the THERA patient support® at 1-833-23THERA (1-833-238-4372).

Please see full Prescribing Information for TROGARZO®.

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Netflix Star Chef Gabe on Shattering HIV Stigma and Inspiring Others After the first episode of his Netflix show “Say I Do” aired, Chef Gabriele Bertaccini received a letter that has stuck with him.

PHOTO: CONSTANCE HIGLEY

T

he letter was from a 19-yearold viewer in the Philippines who, while watching the show, burst into tears. “I tested positive for HIV two weeks ago. I am sitting here with my mom, and I started crying because I don’t have the courage to tell her. I hope one day I will,” the fan wrote.

The letter reaffirmed Chef Gabe’s goal of being forthcoming about his HIV status, both in the show and in other aspects of his life. He hopes to inspire others with HIV to own their diagnosis as part of their life story and overcome the stigma surrounding the virus.

“I feel a hundred percent confident the stigma is still attached to the idea of what HIV and AIDS were in the late 6

‘80s and early ‘90s. It prevents us from speaking our truth and speaking vulnerably and openly about this disease,” Chef Gabe said.

Speaking up Though Chef Gabe didn’t plan to reveal this health detail on the show, he felt compelled to do so when the groom-to-be in the episode, Marcus, shared that he was living with diabetes.

Though he and Marcus were different people, he said, “that’s exactly where we connected: on our struggles and our fears.”

Human immunodeficiency virus (HIV) causes the disease AIDS and dismantles the immune system, preventing the body from fighting off life-threatening infections.

However, thanks to advances in treatment, people with HIV

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can lead relatively normal, healthy lives, including having sex without transmitting the virus to a partner.

While medical professionals are aware of these truths, many of those in the HIV community may not be. And stigma can prevent people from getting tested, leading to health risks and emotionally closing up about a positive diagnosis.

In speaking up, Chef Gabe hopes to welcome others to the conversation and own their diagnosis as part of who they are, without feeling judgment or shame.

“I think that [the scene in ‘Say I Do’] was a very important and profound moment that will hopefully inspire people to connect with others around them and whom they love and feel safe with, and to open up about their

stories so that others can do the same,” he said.

Inspiring others Despite his confidence and openness now, Chef Gabe explained he went through the typical emotional stages everyone goes through following a serious medical diagnosis: denial, fear, and acceptance. He was able to come to terms with this new fact of his life, and not let it impede his personal or professional aspirations, thanks to educating himself about HIV and having a supportive and tight-knit group of friends.

Instead of feeling sorry for himself after his diagnosis, he asked himself: “How can I make this mine and part of my own story? What is there to learn with this? Why is this happening to me?”

Chef Gabe encouraged anyone newly diagnosed with HIV to take their time accepting this news, but also to heed the advice of inspirational speaker Brené Brown. Specifically, Brown advises that life doesn’t happen in the stands; it happens in the arena, with blood, sweat, and tears.

“Not speaking about something that affected me so personally would have felt like watching life happen without actually being in the arena,” Chef Gabe said. “[When I got diagnosed,] I wish somebody told me, it’s okay, let’s process it and get healthy. And now that I am healthy and knowledgeable about how this will affect my body and life, let’s move forward in an even more beautiful, vulnerable, and full way.” n Melinda Carter

PHOTO: ERIC BOND FOR ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

A Mother’s Journey to an HIVFree Family

As a mother living with HIV, Martha Cameron knows how powerful access to comprehensive treatment services is for HIV-positive women.

An HIV-positive diagnosis in 2003 was Martha Cameron’s worst fear realized. She had already lost family and friends to AIDS-related causes when she fell ill while working in her home country, Zambia.

Martha accessed treatment through programs supported by the President’s Emergency Fund for AIDS Relief — a U.S. program that funds the global HIV/AIDS response. Slowly, her health

improved, and she returned to her work with children orphaned due to HIV/AIDS. There, she met her husband, Andy. Soon after they married, they talked about starting a family.

Martha worried about the risks of passing HIV to her baby, but her doctor confirmed that with consistent medication, her child could be born HIV-free. She gave birth to her first healthy baby in 2009.

American healthcare Before having another child, Martha and Andy moved to the United States. During her second pregnancy, she received support from

the Ryan White program, which helps half a million people access HIV services each year and has supported efforts to virtually eliminate mother-to-child transmission (MTCT) in the country.

Grateful for the care she’s received in her life, Martha is dedicated to reaching out to others as executive director of The International Community of Women Living with HIV North America and an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

Inspired by Elizabeth Glaser’s powerful advocacy for children with HIV, EGPAF’s mission to

fight for an AIDS-free generation is close to Martha’s heart. She and the Foundation are driven to see a world where no other mother, child, or family is devastated by the disease.

“We have the ability to prevent MTCT, so for any child to be born with HIV is unacceptable,” Martha says. “To end AIDS, we must keep fighting to bring these lifesaving and comprehensive services to women and families around the world.” n Elizabeth Glaser Pediatric AIDS Foundation MEDIAPLANET

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How a Medical Peer Navigator Program Is Destigmatizing HIV and Advocating for Care

PHOTO: COURTESY OF CAN COMMUNITY HEALTH

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CAN Community Health’s medical peer navigator program connects people living with HIV with newly diagnosed patients, and the program has proved lifesaving for patients and peers alike.

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alerie Wojciechowicz was diagnosed with HIV in 1985. “My doctor told me I had no more than 18 months to live and to not have kids,” she said. “We’re talking about the mid-’80s, when we had no computers, no cell phones, no medications. It was horrible. People were just dying left and right. We didn’t know what to do.”

Wojciechowicz has worked in HIV/ AIDS advocacy for over 25 years and is currently a medical peer navigator with CAN Community Health, a nonprofit organization providing medical and counseling support to people 8

living with HIV. The peer navigator program, which Wojciechowicz helped spearhead, connects newly diagnosed patients with people living with HIV. “Many peer programs are designed just for someone who is newly diagnosed or not taking their medication, but we decided early on that we were going to see everybody,” Wojciechowicz said.

Extending care Medical peer navigators guide their patients through doctor visits to managing medications, but it’s the emotional support that really makes

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a difference in a patient’s life. “The minute we disclose our status, there’s a different level of connection,” Wojciechowicz said, “especially when people are just diagnosed. That’s the greatest gift for us, to be able to work with them because we all know how that feels. We know that fear, that terror, and so working with someone who’s just finding out they have HIV is such a gift.”

CAN Community Health began in Florida, which in 2018 had the third highest rate of HIV infections in the United States, according to the CDC. CAN has since initiated peer navigator programs in Texas, New Jersey,

Virginia, Arizona, and South Carolina, and has been serving the needs of the Southeast United States for over 29 years, with now 36 locations nationwide.

Isaiah McCall, one of four peer navigators in Columbia, South Carolina, was diagnosed with HIV in 2009. “I started becoming an advocate for HIV and AIDS because one of my very close friends passed from HIV/ AIDS,” McCall said. “Ever since then I’ve been an advocate for people going out and getting tested, practicing safe sex, and trying to reduce stigma.”

Even today, when HIV has become medically manageable, the stigma around the virus prevents many people from getting care. “They don’t want to tell anybody their status so they’re not taking their medicine,” McCall said. “The rate here in South Carolina keeps going higher and higher.”

Overcoming barriers In states like South Carolina, where the HIV infection rate is increasing — they have the ninth highest HIV rate in the country — there are other factors that exacerbate the situation.

“Housing is one of the major barriers,” McCall said. “If I don’t have a house to stay in, I’m not going to be focused on my medicine. The same barriers apply for unemployment. So many people think they have to disclose their HIV status to their employer. I tell them, no. That is a personal matter. The only person you need to tell your HIV status is your doctor or the person you’re having sex with.”

Working as a peer navigator, McCall has helped establish transportation for people living in rural areas to have access to inner-city medical care, connected with church groups to educate congregations about safe sex, and visited colleges to offer testing, counseling, and prevention options such as PrEP. “It’s my goal to break down all of these barriers to make sure patients are mentally and emotionally prepared for this journey,” McCall said.

Becoming a peer navigator gave McCall a sense of purpose and connection. “In my community, being an African American male, being LGBT, being a pastor, it’s something that needs to be done,” he said. “It’s not the same for a client to come in and talk to somebody that’s not living with HIV. At least with me they know we share a similar story, so it’s easier for them to open up to me and talk about things that they won’t talk about with their doctors.”

What makes the role so fulfilling is making the connections with patients, McCall said. One of his current patients is a young man McCall met when they were both working at McDonald’s years earlier. “Something told me to reach out to him,” McCall said. “He came by later that week and I got him enrolled in care. We got him on his medication. It really brightens up my day that I have an 18-year-old who went through so much. It’s little stuff like that when you know you’ve made a positive change in someone’s life.”

Disclosure and support Disclosing one’s status can be one of the biggest hurdles for newly diagnosed patients, particularly in areas where the stigma surrounding HIV is still prevalent. “We can’t get people to attend our support groups, even virtually — they can do it anonymously — because they’re afraid someone’s going to figure out who they are,” Wojciechowicz said. “There’s still a lot of closed-minded people out there and the discrimination manifests in so many different ways for us.”

One of Wojciechowicz’s patients, who asked to remain anonymous, found the peer navigator program so helpful because he had no one else with whom he could discuss his status. “I didn’t have anyone to talk to at all and I was really scared,” he said. “I didn’t feel like I had anyone to turn to.”

The peer support program partnered the patient with Wojciechowicz, who has helped him through some of his most difficult times. “Valerie

was able to help me survive and get through all of this,” he said. “When I first got out of the hospital, they told me I was better, but they had had me on all these really strong steroids.”

The patient’s steroids induced powerful hallucinations — a common side-effect but one the patient wasn’t prepared for. Wojciechowicz was able to connect with the patient and he received care he might otherwise not have had. “There’s not a moment or day that goes by where I don’t think of my peer navigator,” he said. “She means the world to me.”

“The impact of our peer navigators is evident with our clients in overcoming the stigma-related barriers.

Peer navigators assess the situation to determine what works for each individual and how they can help a newly diagnosed person through a very frightening time,” shares Richard E. Carlisle, president and CEO of CAN. “They are the stars of our organization, and without them, we couldn’t do what we do.”

As well as being a peer navigator, Wojciechowicz speaks nationally about HIV awareness, particularly in schools, and she said she gets asked this question a lot: If you could give it back, would you? “My answer is always no,” she said. “I’ll do everything I can in prevention — from preventing anyone else from having to live this life — but I get up every single day and I get to make a difference in the world. Watching my team grow and them watching our clients grow, it’s the most amazing thing.” n Ross Elliott

To learn more about medical peer navigators and other services at CAN Community Health, visit cancommunityhealth.org.

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U=U: Changing What It Means to Live With HIV People with HIV who are on medications that reduce the virus to undetectable levels cannot sexually transmit HIV. This littleknown fact is known as U=U.

U

=U, or Undetectable Equals Untransmittable, is the scientifically proven fact that people with HIV who are on medications that reduce the virus to undetectable levels cannot sexually transmit HIV. U=U has been accepted by the global medical and scientific community including the CDC, WHO, and UNAIDS. It is redefining what it means for people with HIV to live

and love without fear of transmitting HIV to their partners.

U=U is game-changing for people with HIV and plays a foundational role in ending the HIV epidemic. First, it transforms the social, sexual, and reproductive lives of people with HIV by freeing them from the shame and fear of transmitting HIV to their partners. It dismantles the HIV stigma that destroys lives and impedes our prog-

ress toward ending the epidemic. It reduces the anxiety associated with testing and encourages people with HIV to start and stay on treatment to stay healthy and to prevent new transmissions. Finally, it offers a public health strategy to increase access and remove barriers to treatment and care to save lives and prevent new transmissions.

No reason to forego love Many people with HIV are

still suffering from both internal and societal stigma because they incorrectly believe there’s a risk that they can transmit HIV. U=U is a solution to longstanding HIV stigma, bringing hope and new possibilities for people with HIV to love, have sex, and conceive children without any fear of passing on HIV. Despite the life-changing benefits of U=U, many people with HIV still do not

know about it. It is urgent and important to share this life-changing news with people with HIV, healthcare providers, policy makers, and the public. The news about U=U must be widely disseminated in a clear, consistent, and accurate manner to greatly improve the lives of people with HIV and bring us closer to ending the epidemic. n Bruce Richman, Founding Executive Director, Prevention Access Campaign

Undetectable = Untransmittable Uniting to redeďŹ ne what it means to love and live with HIV around the world.

A person living with HIV who is on treatment and has an undetectable viral load cannot transmit HIV through sex.

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www.preventionaccess.org

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The Power of Talking About HIV

According to expert Kirsten Eid, the key to fighting HIV in the community is to create an open dialogue for people living with HIV. For the approximately 1.2 million people living with HIV in the United States today, advanced treatments have changed the conversation. But the stubborn stigma remains a serious obstacle to healthy outcomes — and the global pandemic isn’t helping.

“Both our substance abuse treatment and our mental health counseling are in very high demand right now,” says Kirsten Eid, LMSW, director of HIV services at the Lesbian, Gay, Bisexual & Transgender Community Center in New York City. Eid reports a 40 percent increase in requests for mental health

counseling services since the Center closed due to the pandemic.

Open dialogue Eid sees firsthand how the stigma surrounding HIV affects people’s health. She believes the key is encouraging an open dialogue.

“By reducing the stigma, more people can be educated about the risks of HIV and know how to keep themselves as safe as possible,” she notes.

Person-centered The key is to normalize the subject of HIV. “Words are definitely important,” Eid says. “The stigma can cause people to avoid seeking medical treatment or to

avoid disclosing information to their partners. That leads to poor health outcomes. When talking about HIV, don’t use language like ‘HIV-infected person.’ It’s dehumanizing. You don’t hear people saying things like ‘cancerous person,’ and it’s no different for HIV.” Eid believes in the power of communication.

Though there is a lot of information available through the CDC’s website or the AIDS Institute, Eid also recommends in-person experiences like local art community events focused on HIV work.

“You can learn a lot from artists, and from people whose lives have been directly impacted by HIV and the HIV stigma,” she says. “Firsthand experiences put it all in perspective. n Jeff Somers MEDIAPLANET

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If you are living with HIV, ask yourself the following questions: Have I lost weight?

Have I lost weight without trying?

Does the change in my weight impact how I feel about myself or my health?

Is my clothing looser than before because I have lost weight without trying?

Have those I know mentioned that my appearance has changed?

Do I have less energy?

Are any of my usual activities more difficult to perform?

Am I exercising less than in the past?

Do I need to take a break more often?

Do I tire more easily after certain activities?

If you answered “yes” to any of these questions, take this questionnaire to your next appointment with your healthcare provider to start a conversation about HIV-associated wasting and to inquire about treatment.

Together you can discuss next steps. To learn more about HIV-associated wasting, visit: AmIWasting.com

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