This is only a brief summary of important information about BIKTARVY® and does not replace talking to your healthcare provider about your condition and your treatment.
MOST IMPORTANT INFORMATION ABOUT BIKTARVY
BIKTARVY may cause serious side e ects, including:
` Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without fi rst talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.
ABOUT BIKTARVY
BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.
BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.
Do NOT take BIKTARVY if you also take a medicine that contains:
` dofetilide
` rifampin
` any other medicines to treat HIV-1
BEFORE TAKING BIKTARVY
Tell your healthcare provider if you:
` Have or have had any kidney or liver problems, including hepatitis infection.
` Have any other health problems.
` Are pregnant or plan to become pregnant. Tell your healthcare provider if you become pregnant while taking BIKTARVY.
` Are breastfeeding (nursing) or plan to breastfeed. Talk to your healthcare provider about the risks of breastfeeding during treatment with BIKTARVY. Tell your healthcare provider about all the medicines you take:
` Keep a list that includes all prescription and over-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.
` BIKTARVY and other medicines may a ect each other. Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.
POSSIBLE SIDE EFFECTS OF BIKTARVY
BIKTARVY may cause serious side e ects, including:
` Those in the “Most Important Information About BIKTARVY” section.
` Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.
` Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.
` Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.
` Severe liver problems , which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.
` The most common side e ects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).
These are not all the possible side e ects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.
You are encouraged to report negative side e ects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.
Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.
HOW TO TAKE BIKTARVY
Take BIKTARVY 1 time each day with or without food.
GET MORE INFORMATION
` This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.
` Go to BIKTARVY.com or call 1-800-GILEAD-5.
` If you need help paying for your medicine, visit BIKTARVY.com for program information.
Ask your healthcare provider if BIKTARVY is right for you. For her today and her tomorrow. People featured are compensated by Gilead. tomorrow.
*Source: IQVIA NPA Weekly, 04/19/2019 through 05/19/2023.
“I’ve learned how to live with HIV, and my children and my family are a huge part of that.”
MARICELA SWITCHED TO BIKTARVY®
BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.
POZ BLOGS
Our roster of bloggers spans the diversity of the HIV community. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates. Join the conversation in the comments section. Visit the blogs to find hope and inspiration from others.
D POZ OPINIONS
Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing. Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.
#UNDETECTABLE
The science is clear: People who have an undetectable viral load don’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention. Go to poz.com/undetectable for more.
POZ DIGITAL
Ci Ci Covin (le ) and Masonia Traylor
Scan the QR code (le ) with your smartphone camera or go to poz.com/digital to view the current issue and read past issues online. liver fat through exercise • boosting immune recovery through early HIV treatment
6
& TREATMENT
8 BASICS Adherence to medication
9 PROFILE
HIV and U=U researcher Alison Rodger, MD
10 FEATURE
Ci Ci Covin and Masonia Traylor share their story of friendship and fighting for their health.
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That’s What Friends Are For
IWILL ALWAYS REMEMBER
how crushed I felt when I tested HIV positive in 1992. I was 22 years old and not out of the closet to my family. That was before effective treatment, so I feared that I would never see 30.
Although my social network was small, I had a few friends in those early years who I could count on for support. That didn’t make everything better, but it sure made things more manageable than if I had been alone while learning to live with HIV. I’ll be forever grateful for the acts of kindness that I received back then.
If the HIV epidemic has taught me anything, it’s that you can’t fight this virus in a vaccuum. It literally takes a community of folks dedicated to the same vision to get anywhere in a given struggle. In this case, it’s achieving a world without HIV.
Our cover subjects—Ci Ci Covin and Masonia Traylor—exemplify the best in finding support from friends and in fighting the virus. They shared their HIV stories in Unexpected, an Emmy-nominated short documentary film produced by Emmywinning actress and HIV advocate Sheryl Lee Ralph. Go to page 10 to read more.
In this issue of POZ Focus, which always specializes in single topics, we take a deep dive into women’s health. In particular, we explore the numerous issues that women with HIV must consider, including treatment options for the virus.
Ci Ci and Masonia not only give us details about being in the documentary, but they also reveal the realities of selecting and adhering to HIV treatment. Please be sure to give their feature story a read.
We also profile a woman who is HIV negative but who, as a researcher, helped to establish that people living with the virus who maintain an undetectable viral load do not transmit it via sex, a concept known as
Undetectable Equals Untransmittable (U=U). Go to page 9 to read how Alison Rodger, MD, and her colleagues confirmed that U=U. Researchers are constantly studying ways to continue improving care and treatment for people living with HIV. In addition to U=U, another HIV transmission concern has been settled recently. The American Academy of Pediatrics released new recommendations saying moms who are living with undetectable HIV can safely breastfeed their babies. The same guidelines apply to chest feeding for trans men. Go to page 4 to learn more. Women with HIV are at higher risk for cervical and anal cancer. At-home tests for human papillomavirus, which causes almost all cases of these cancers, may be on the horizon. Go to page 4 to read more. See the rest of the issue for more on women’s health.
R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
POZ.com.
Breastfeeding for Moms With HIV
HIV risk when the parent is undetectable is less than 1%.
Moms living with HIV can safely breastfeed their babies if they’re on HIV meds and maintain an undetectable viral load, according to new recommendations from the American Academy of Pediatrics (AAP) published in the journal Pediatrics.
“The risk of HIV transmission via breastfeeding from a parent with HIV who is receiving antiretroviral treatment (ART) and is virally suppressed is estimated to be less than 1%,” according to the article. (Note: The same guidelines apply to chest feeding for trans men.)
The pediatrics group had previously advised that women with HIV not breastfeed their infants regardless of their viral load and treatment regimen due to the risk of mother-to-child transmission.
Untreated HIV can be transmitted through breast milk as well as blood, semen, pre-cum and rectal and vaginal fluids.
Thanks to effective treatment, many people with HIV are living healthy lives and planning families. In fact, about 5,000 people with HIV give birth each year in the United States.
Antiretroviral treatment is recommended for all people with HIV to reduce morbidity and mortality and to prevent the transmission of HIV to others. A person who adheres to meds consistently and
maintains an undetectable viral load does not transmit HIV to another person via sex. This fact is referred to as Undetectable Equals Untransmittable (U=U).
Things have changed in the era of U=U. The viral load threshold for reducing transmission via breastfeeding is unknown, but only a couple of cases of transmission from mothers with a viral load below 50 have been reported.
Moving forward, AAP recommends that pediatricians offer support and counseling for those who opt for breastfeeding and are on ART as prescribed and achieving viral suppression, according to the AAP report.
“The AAP recommends that for people with HIV in the United States, replacement feeding (with formula or certified, banked donor human milk) is the only option that is 100% certain to prevent postnatal transmission of HIV,” the report states.
“However, pediatric health care professionals should be prepared to provide infant feeding counseling and a familycentered, culturally sensitive harm reduction approach for people with HIV on ART with sustained viral suppression who desire to breastfeed.”
—Laura Schmidt
New Screening Options for HPV
At-home tests for human papillomavirus may be on the horizon.
Women will soon have easier—and more private—options to screen for human papillomavirus (HPV), the virus that causes almost all cases of cervical cancer as well as anal cancer, some oral cancers and other malignancies. Women with HIV are at higher risk for cervical cancer and anal cancer.
Two self-collection methods have been approved by the Food and Drug Administration (FDA) that allow women to use vaginal swabs to gather samples in a health care setting, such as their primary care doctor’s o ce, a pharmacy or an urgent care facility. Those samples are then sent to a lab for evaluation.
The FDA has approved selfcollection methods of screening for HPV by Roche and by BD (Becton, Dickinson and Company), reports The Washington Post.
What’s more, an at-home collection method by Teal Health may receive FDA approval later this year,
according to the newspaper.
The newly approved HPV selfcollection solutions offer a convenient screening option for people who may have limited access to preventive cancer care; what’s more, they are much less intrusive than Pap smears.
The American Cancer Society (ACS) applauded the FDA approvals. “Almost all cervical cancers are caused by persistent infection with certain types of HPV,” ACS CEO Karen Knudsen, MBA, PhD, said in a news release. “Self-collection can expand access to screening and reduces barriers, which will give more people the opportunity to detect, treat and ultimately survive cancer.”
“Despite the benefits of cervical cancer screening, not all women and people with a cervix get screened regularly,” added William Dahut, MD, chief scientific o cer at ACS. “Most cervical cancers are found in people who have never had a cervical cancer
screening test or who have not had one recently. That’s why adding self-collection in a health care center as a screening method for this potentially deadly disease can make a huge impact.”
Early detection and treatment of cervical cancer increases the likelihood of long-term survival.
Despite the benefits of cervical cancer screening, many people do not participate in routine screening. In fact, more than half of people diagnosed with cervical cancer in the United States have never been screened or have only been screened infrequently, according to the National Cancer Institute.
Barriers to screening include limited care, cost and modesty. —LS
Stigmavir to Treat HIV Stigma?
The fictitious drug is part of an awareness campaign.
HIV stigma in health care is real and harmful. Fortunately, health care providers can now take the antiviral drug Stigmavir to treat their stigma. Unfortunately, the drug is fictitious, but you can watch a real ad for it on YouTube.
Casey House, an AIDS service provider in Toronto, created the commercial as a public service announcement. It’s the latest installment in the organization’s long-running “Smash Stigma” campaign. At first serious and straightforward, the Stigmavir ad morphs into a musical set to a version of “I Will Survive” by Gloria Gaynor—the legendary diva herself even provided the rights to the song, according to a press release about the campaign. Here’s a snippet of lyrics from the PSA:
“First I was afraid, I was petrified,” sings a doctor mid-surgery. “I knew the science, but I was scared, I was shook inside. Then I took a pill and
researched all night long, and I grew strong, and I learned how to carry on.”
“I stigmatized, all the time,” a dentist chimes in. “Looking back at my behavior, it should have been a crime.”
“I should have trusted science, grounded in reality. Instead I broke the trust that my patient had in me,” adds an anesthesiologist. “Now Stigmavir—it made things clear.
“I’m finally cured now: no more HIV fear.”
Despite advancements in HIV treatment, stigma persists—including in health care settings. According to the Canadian AIDS service provider, one in five people living with HIV are denied health services because of stigma and discrimination.
“Stigma remains a significant barrier for individuals living with HIV seeking access to health care,” said
Visualized Data on Stigma Sexual
behavior stigma affects HIV outcomes.
Aiming to track and reduce the stigmas that act as a barrier to HIV prevention, treatment and care—as well as a hindrance to better overall health outcomes—the interactive HIV data tool AIDSVu recently added a new online feature, the Stigma Dashboard, that offers visualized stigma-related data. Currently, the dashboard tracks sexual behavior stigma in Georgia, New York and Maryland. Specifically, it includes data on men who have sex with men in those states. Additional data and geographic areas will be incorporated in future phases.
Johns Hopkins University Bloomberg School of Public Health researchers Amrita Rao, PhD, and Stefan Baral, MD, created the Stigma Dashboard to showcase progress to eliminating stigma across different geographic regions in a tangible way.
Stigma comes in many forms and can negatively affect the way people living with and at risk for HIV interact with medical professionals and adhere to HIV treatment. It can also deter HIV-negative individuals from accessing prevention tools, such as pre-exposure prophylaxis (PrEP).
What’s more, many types of stigma can affect a person’s well-being and engagement in care. Racism, homophobia, transphobia and HIV stigma are but a few examples.
“Stigma is a central underpinning as to why somebody is at risk for being homeless and why a gay man may be at risk
Casey House CEO Joanne Simons in the press statement. “This year we’re inviting other health care providers to join us in the mission to create positive health care spaces that are informed, sensitive, inclusive and inquisitive rather than assumptive. Everyone deserves health care that meets their needs, treats them with respect and maintains confidentiality.” —Trent Straube
for HIV, and beyond,” Baral told AIDSVu. “It’s like you can follow this pathway along why some folks have worse addictions, why some folks have more dependencies and so on—it’s that stigmas have manifested in different ways.”
He continued: “We are trying to [measure] stigma in a very nuanced way—through anticipated stigma, perceptions of stigma, enacted stigma, intersectional stigmas and beyond. We want to understand the drivers that worsen health outcomes among certain communities structurally and then provide insights into how to respond to them.”
Researchers used qualitative survey data from cisgender gay, bisexual and other men who have sex with men throughout the United States. The dashboard provides information on stigma from family, anticipated health care stigma and general social stigma. —LS
Addressing Unmet Needs of Older People Living With HIV
Non-HIV medical care, peer support and housing are urgent unmet needs.
Nearly 40% of older people with HIV have at least one unmet need, according to a recent study. Today, more than half of HIV-positive people in the United States are ages 50 or older. Like the general population, people living with HIV are more prone to comorbidities as they age, and they may face challenges, such as reduced mobility, cognitive decline and financial instability.
Researchers with the Centers for Disease Control and Prevention assessed the need for ancillary services among 2,391 HIV-positive people ages 55 and older using data from the Medical Monitoring Project collected between June 2019 and May 2021.
They found that 17% had at least one unmet need for HIV support services, such as medication payment assistance, adherence support, case management, patient navigation or HIV peer group support.
Further, 27% had an unmet need for non-HIV medical services, such as dental care, mental health care or substance use counseling, and 27% had an unmet need for subsistence services, including transportation, food or assistance with shelter or housing.
“Additional concerted efforts by state and local health departments, federal entities, private providers and community partners are necessary to reduce unmet needs,” the researchers concluded.
Heart Health for People With HIV
People
with HIV are
People living with HIV are at greater risk for cardiovascular disease (CVD) compared with the general population, but managing risk factors can make a big difference.
at higher risk for cardiovascular disease.
Researchers at Kaiser Permanente Northern California analyzed CVD risk factors among people with and without HIV. In general, both groups had similarly high levels of risk management. Overall, people with HIV had about a 20% higher risk for cardiovascular events. HIV-positive people with no traditional CVD risk factors still had more events than their HIVnegative counterparts, indicating that HIV-specific factors, such as inflammation, play a role. CVD risk was lessened in positive people with wellcontrolled blood lipid levels and diabetes, but their risk remained elevated
despite well-controlled hypertension.
People with HIV may require CVD management at lower thresholds. An analysis from the REPRIEVE trial confirmed that a standard CVD risk calculation underestimates risk for people with HIV, especially women and Black people. REPRIEVE showed that a daily statin reduced the risk for heart attacks, strokes and other major cardiovascular events by 35% among HIV-positive people with low to moderate CVD risk, a group that ordinarily would not be prescribed statins. Based on these findings, the Department of Health
and Human Services recently updated its guidelines to recommend statins for people with HIV ages 40 and older with low or intermediate CVD risk. Another study conducted in Haiti showed that HIV-positive people with prehypertension, or blood pressure slightly above the normal range, were 57% less likely to develop hypertension if they got early treatment with a calcium channel blocker. Lowering the threshold for antihypertensive treatment for people with HIV “may be an important tool for cardiovascular disease prevention,” says Lily Yan, MD, of Weill Cornell Medicine.
Reducing Belly and Liver Fat Through Exercise
For HIV-positive people, weight gain is a growing concern.
Getting enough physical activity can help older people with HIV shrink their waistline and reduce fat accumulation in the liver, according to two recent studies. Weight gain is a growing concern for HIV-positive people. The accumulation of visceral fat within the abdomen—indicated by a large waistline— is particularly detrimental to health.
The first research team assessed the association between physical activity and abdominal fat in 416 people (average age 58) with well-controlled HIV. The participants used an accelerometer to record their physical activity for about a week. A er controlling for other factors, waist circumference was about 1 centimeter smaller for every additional 1,000 steps per day. Conversely, a greater amount of daily sedentary, or inactive, time was associated with a larger waistline.
In the second study, researchers looked at the link between physical activity and liver fat accumulation, or steatosis, among 466 people (median age 52) in the Swiss HIV Cohort Study. Transient elastography screening showed that half had at least moderate liver steatosis, and a third had severe steatosis; even among lean individuals, nearly a third had steatosis. A er controlling for other factors, people who did not get the recommended amount of physical activity were more than twice as likely to have steatosis. What’s more, the likelihood of steatosis rose with each additional hour of daily sitting time.
“Future work should investigate how to tailor the amount, type and intensity of physical activity needed to reduce adiposity in people with HIV taking contemporary HIV medication,” Allison Webel, RN, PhD, of the University of Washington School of Nursing, and colleagues wrote.
Boosting Immune Recovery Through Early HIV Treatment
Uncertainty
about when to start antiretrovirals is now over.
People who start antiretroviral therapy soon a er acquiring HIV are more likely to experience full immune recovery, according to a recent study. Prior research has shown that starting antiretrovirals during acute HIV infection (the first month) can limit the size of the viral reservoir; starting treatment during primary HIV infection (the first six months), before extensive immune damage occurs, is also beneficial.
The HEATHER study included 204 people in the United Kingdom with documented primary HIV infection who started antiretroviral treatment within three months a er diagnosis. Even at this early stage, most already showed evidence of immune dysfunction.
Almost everyone achieved a viral load below 200 a er starting treatment. However, a er nearly three years of follow-up, just 47% reached a CD4 T-cell count above 900 (normal for HIV-negative people is 500 to 1,500), and 64% achieved a normal CD4/CD8 ratio (greater than 1.0). Having a lower CD4 count, CD8 count or CD4/CD8 ratio at treatment initiation was associated with a longer time to CD4 cell recovery. For every day treatment was delayed, there was a lower likelihood of achieving a normal CD4 count and CD4/CD8 ratio.
While there was once uncertainty about when to start antiretrovirals, it is now well established that sooner is better. “Our findings further the rationale for same-day or earlier antiretroviral therapy, even during primary HIV infection, to support more rapid immune recovery,” John Patrick Thornhill, MD, PhD, of Imperial College London, and colleagues wrote.
ADHERENCE TO MEDICATION
A key to successful HIV treatment is taking antiretrovirals as directed.
MODERN ANTIRETROVIRAL
regimens are highly effective and generally well tolerated, so treatment success o en comes down to consistent use.
Regular use is also a key to effective pre-exposure prophylaxis (PrEP). Adherence means taking the correct dose of medications every time as prescribed by a health care provider or recommended by a pharmacist.
To keep viral load suppressed, the concentration of antiretrovirals in the body must be kept at a high enough level. If drug levels fall too low, the virus can resume replication, which can lead to immune system damage, disease progression and HIV transmission. Poor adherence can also cause drug resistance, meaning meds may stop working. With PrEP, inconsistent use raises the risk of HIV acquisition.
But taking pills every day is not always easy. Some people have di culty remembering to take their meds, or they don’t want to think about having HIV every day. Drug or alcohol use, depression and other mental health issues can interfere with good adherence. Concerns about side effects can make people reluctant to stick to their treatment. Some people are worried about having
pill bottles that could reveal their HIV status, or they may be in situations where their meds could be lost or stolen. Finally, if the cost of medications is a concern, people may be tempted to take them less o en to stretch their prescriptions.
Antiretroviral treatment and biomedical prevention have come a long way in recent decades. Many modern regimens require just one pill once daily with few or no food requirements. In addition, there are now long-acting
ADHERENCE TIPS
• Make it a habit. Keep meds next to something you use every day, like your coffeepot or toothbrush.
• Beware of schedule changes. Some people have more trouble remembering their meds on days off from work or school or during a vacation.
• Meds on the go. If you need to take your medications while outside the house, check out portable pill cases— some even have built-in timers.
• Travel smart. Keep your meds in carry-on luggage and bring extra doses in case of flight delays or other unexpected events.
• Plan ahead. Regularly refill your prescriptions so you don’t run out.
injectable antiretrovirals that can be taken once monthly or less o en.
Some people find it more convenient to take a pill every day, while others would rather visit a clinic periodically for a shot. Having more options makes it easier for everyone to find an HIV treatment or prevention regimen that works for them.
When starting treatment for the first time or switching to a new regimen, consider whether your lifestyle poses any potential obstacles to good adherence. For example, do you eat meals and go to bed at a consistent time? If you’re using a combination that requires multiple pills or more frequent dosing, ask your doctor whether a simpler regimen might be right for you. Talk to your health care provider if you are struggling with drug side effects, substance use or mental health issues. If you’re having trouble affording your medications, talk to your doctor, case manager or an AIDS service organization about health insurance options and payment assistance programs. Lapses in treatment adherence can happen to anyone. Don’t feel bad or guilty if you sometimes miss a dose, but resolve to do better for the sake of your health and well-being. Q
REVOLUTIONARY RESEARCHER
Effective HIV treatment also prevents transmission.
ALISON RODGER, MD, IS ONE OF THE MOST CONSEquential HIV scientists in the history of the disease. Her research, much of it done at University College London, demonstrated definitively that a person with an undetectable viral load does not transmit HIV via sex.
Anecdotal evidence from serodiscordant couples had already suggested that people with undetectable viral loads don’t transmit HIV. Rodger and her colleagues proved that Undetectable Equals Untransmittable (U=U) via rigorous adherence to the scientific method. By proving that U=U, she helped usher in a new era in the battle against the virus.
“We’ve been building the evidence for about two decades, and
we know that a person’s viral load is the biggest determinant of risk,” says the Scottish-born Rodger. “But the PARTNER studies that I did were kind of the tipping point in our approach to messaging. Those studies gave people the confidence to be definitive about U=U. Actually, the risk is zero.”
Rodger’s collaboration with U=U evangelist Bruce Richman, founding executive director of the Prevention Access Campaign, has been especially fruitful.
“Alison’s revolutionary research provided overwhelming evidence for the U=U movement,” Richman says. “She didn’t stop at research. She’s worked tirelessly to ensure the science reaches the field, enabling millions of people living with HIV to live and love without fear. It’s been one of my life’s greatest joys to work with Alison to translate her research into real-world impact.”
In addition to saving lives and combating stigma, the science behind U=U is helping to roll back laws from the 1980s and ’90s that made it a crime not to disclose your HIV status to sexual partners, regardless of whether HIV was transmitted. A punitive response to a heavily stigmatized disease, these laws criminalized the sex lives of people with HIV. And by amplifying the stigma and discouraging testing and treatment, these reactionary laws made the AIDS crisis even more lethal.
Currently, Rodger’s research is helping activists around the world to repeal those laws.
“The PARTNER data challenges these laws because there is no risk,” she says. “And there’s been a lot of repeal of these laws because of U=U. I think one of the strengths of U=U is actually the evidence behind it. It’s not simply an activist or community rallying cry. It’s based on such robust evidence, and I think that’s what convinces you.”
Alison Rodger’s research helped prove U=U.
If Rodger remains modest about the scientific and political impact of her work, it’s because to her, the real heroes in her remarkable journey are the people who volunteer for clinical trials and research studies. It’s their sacrifice that propels the science, a fact she’s keen to note whenever she presents her research.
“My final slide [in presentations] is always a huge thanks to people who generously took part in these studies, people with HIV who so generously took part just to push the science a little bit further. They’re the real heroes of all these studies.” Q
CI
CI
COVIN AND MASONIA TRAYLOR
SHARE THEIR STORY OF FRIENDSHIP AND FIGHTING FOR THEIR HEALTH.
WORLD AIDS DAY 2023 WAS VERY SPECIAL FOR BEST FRIENDS CIARRA
“Ci Ci” Covin and Masonia Traylor. That was the day the film Unexpected premiered, introducing these two exceptional women living with HIV to the world. The 22-minute documentary about Black women living with HIV in the South was produced by Emmy-winning actress and advocate Sheryl Lee Ralph.
“It’s indescribable how full you can feel from another woman living with HIV saying she finally felt seen,” says Traylor, 37, of Atlanta. “Whether she was a longtime survivor or newly diagnosed, she felt empowered by the conversation we had within that documentary.”
The film gives viewers a glimpse into Traylor’s and Covin’s lives as mothers, advocates and women living with HIV. The friends are shown preparing and delivering care packages to women living in rural Georgia who have been newly diagnosed with HIV as well as supporting one another.
“It’s a true display of our friendship, the work we do and the people that we get to help,” says 36-year-old Covin of Philadelphia. But there is much more to their stories.
COVIN’S JOURNEY WITH HIV BEGAN IN 2008
during the summer before her senior year at the University of Georgia. Covin visited a clinic to obtain birth control; while there, she was offered an HIV test. “That’s when I found out I was positive,” she recalls. “I cried for three days.”
Luckily, Covin wasn’t alone. She had her mother’s support, which made a big difference in how she handled her diagnosis.
“I made a decision that HIV wasn’t going to be that big black cloud that followed me,” Covin says. “I was going to take the power of what it meant to live with this diagnosis.”
But getting on treatment wasn’t going to be easy. Covin’s Georgia town wasn’t set up to provide HIV services. She had to drive 45 minutes to Macon, the closest city, to receive care.
“It was about 30 days between my diagnosis and my first
appointment,” Covin says. “I had 30 days to Google all of the things that were supposedly going to be in my future because of my HIV diagnosis, including death. I put a life expectancy on my life because I hadn’t reached a medical professional yet who could tell me differently.”
At only 20 years old, Covin questioned whether she would ever be able to have kids. And if she did, would she live long enough to see them graduate high school?
TRAYLOR WAS A 23-YEAR-OLD COLLEGE
student raising a young son and trying to make ends meet when she was diagnosed with HIV in 2010.
“I got tested annually by choice,” Traylor says. “The only way you can know if you have HIV is to get tested. HIV could live in your body for years without you knowing it.”
Traylor’s provider at the time didn’t see her as being at risk. But Traylor didn’t let that deter her. This time, her HIV test came back positive. Two weeks later, before she had processed her diagnosis, she learned she was pregnant.
“I felt like a failure,” she says. “There were conversations with people who suggested abortion because who would want to chance having a baby with HIV, let alone be a single parent of two kids with two different fathers? Just the stigma and stereotypes of being a Black woman.”
With the support and reassurance of her providers, Traylor stuck things through. But she was running on autopilot and still hadn’t fully come to terms with her HIV diagnosis.
“It took me six years to accept that I wasn’t going to die and that I had only been dealing with grief and PTSD for those years,” she says.
FOR COVIN, TAKING MEDICA-
tion wasn’t her first choice. She thought there might be alternative treatments. When she did get on HIV meds, her first regimen made her sick. She stopped taking it for some time.
“It was a pill and liquid twice a day,” Covin recalls. “The liquid was disgusting. If I took the medicine at night, I could still taste it in my mouth in the morning.”
When Covin became pregnant in 2010, she consistently devoted herself to treatment. She didn’t want to transmit HIV to her child. Her son was born HIV negative. A year after his birth, the side effects of the HIV meds hadn’t gotten any better. Covin stopped treatment once more and turned to an herbal therapy that she believed cured her of HIV.
“That made me confident enough to go back to the health department to get tested again,” she says. “They diagnosed me with HIV again. The lady that day told me that I was in denial. I took those words to heart. I got back into care and started taking treatment again.”
When Covin visited her doctor and explained what was happening, she was put on a different treatment. As newer drugs became available, she and her doctor found a regimen that worked for her and didn’t make her sick.
During her second pregnancy in 2021, Covin changed her HIV regimen again, since at the time it wasn’t recommended for pregnant people. She returned to her previous regimen after giving birth to her daughter, who is HIV negative.
Today, she takes one pill daily and has an undetectable viral load, which means she cannot pass on the virus via sex.
TRAYLOR STARTED HIV TREATMENT TOWARD the beginning of her second trimester. She was also on a medication that made her very sick.
“I didn’t get to switch any medicine until after I gave birth,” says Traylor, whose daughter was born HIV negative. “They just kept saying, ‘Keep taking it so the baby isn’t born positive.’ But every time I took it, I threw up.”
Traylor fought with her providers to change her regimen around her third trimester. Unfortunately, the meds she wanted weren’t approved for pregnant people.
“Once I gave birth, for about three months, I was still experiencing the same level of sickness that I did while I was pregnant,” says Traylor. “I threatened to stop taking the medicine, and then they switched me to something else.”
Traylor has changed her regimen multiple times since her diagnosis. She advocates for herself but also has a provider who listens to her concerns.
“Because I found out my diagnosis early and didn’t wait to get treated, I have flexibility around how I want to be treated,” she says. “I’ve switched quite a few times.”
Traylor (left) and Covin hope to inspire others.
For about the last 10 years, Traylor has been on a daily onepill regimen. She is also undetectable.
“I make sure that I keep a relationship with my provider where we’re in conversation and where she can reference what is concerning for me—rather than just taking whatever she gives,” Traylor says.
COVIN CREDITS ONE SPECIAL PROVIDER FROM Macon with setting her standard for care. “Although it was in the very deep rural South, I was fortunate that the provider I had been matched with had worked in HIV since the ’80s,” she says. “He was very knowledgeable. He learned from all over the world and brought that information back to Macon.”
The doctor gave Covin the hope that she could one day have children. With his backing, she was also able to give birth vaginally rather than via caesarean section.
Thanks to his support and great care, Covin speaks up when she knows something isn’t right. That’s because she knows what good and compassionate care feels like. “I’m my biggest advocate,” she says.
Covin recently connected with a new provider whom she also likes. “She’s listening to me,” Covin explains. “She’s answering things, even down to the medication that I’m on being known to cause weight gain in Black women.”
Covin feels great having someone respond to her concerns and educate her.
BOTH TRAYLOR AND COVIN HAVE USED THEIR own experiences living with HIV to help others.
Traylor, who has a degree in public policy with a concentration in nonprofit management and leadership, founded the group Lady BurgAndy in 2012 to help youth and all women living with HIV. She has since revised its mission to prioritize helping youth and Black women in the Southeast.
“I just started seeing what was missing, and that was a for-us-by-us space,” Traylor says. “A peer network centering Black women living with HIV and AIDS.”
Through Lady BurgAndy, Traylor offers care packages for women living with HIV who are pregnant, have recently given birth or have experienced pregnancy loss. She also offers them virtual peer support and has helped some of them establish businesses.
She also visits schools to educate youth about HIV and AIDS. Traylor believes that HIV sets the tone for all public health. She hopes she can inspire and empower young people to help make a difference.
“We have these awareness days that I would love for the students to uplift and truly get engaged with and be involved in public health in a new way,” she says.
AFTER COMPLETING HER UNDERGRAD DEGREE in child and family development, Covin earned a master’s in social and community services. She is currently working on completing her doctorate.
“I’m taking all of my scholarly experiences to work with mothers who are living with HIV and their families to help them build community among one another,” Covin says.
To that end, in 2022, she created Momtonomy. The organization brings together these women and creates “a safe space for them to connect, learn and support each other on their journeys.”
Covin also runs the blog Healing Is Voluntary, the acronym of which is HIV. She started it in 2018 after sharing her status on social media for the first time.
“I wrote this post [saying] that I’m living with HIV,” she says. “But then it was like, Now what? You have a responsibility to educate. Because why else would you make this announcement?”
The blog addresses not only HIV but seldom-discussed matters such as poverty and sexual abuse in childhood and adulthood, which can lead to a positive diagnosis.
Covin describes the subjects as “taboo topics that don’t often get as much time as they should in the Black community.”
DOING THIS WORK WHILE ALSO navigating one’s own HIV journey, among other responsibilities, can be challenging. As Covin says, “HIV isn’t the first thing at the top of my list every day.”
and an understanding that most people don’t understand,” Covin says.
They are so close that their kids also spend time together. The two even took a trip to celebrate their birthdays last year.
Traylor wishes she had met a genuine friend like Covin a lot sooner. But she’s grateful that Covin is here now.
“We respect each other, and we click,” Traylor says. “Even the things that we don’t agree with each other about, we still respect those pieces and lift those pieces up, and we don’t put each other down about it.”
COVIN AND TRAYLOR NEVER COULD HAVE imagined the impact that sharing their stories would have. In June, they attended the 51st Annual Daytime Emmys. Unexpected did not win, but it was nominated for two awards: Outstanding Daytime Special and Outstanding Original Song.
“I JUST STARTED SEEING WHAT WAS MISSING.”
—MASONIA TRAYLOR
As mothers and caretakers, Covin and Traylor make sure to look after their mental well-being. For example, they’re both in therapy. But Traylor believes one of the most beneficial tools for her mental health has been peer support. Having someone she can relate to helps her navigate living with HIV.
She’s found that support through her friendship with Covin. “Ci Ci has become one of my best friends,” Traylor says. “I don’t know how I would do things without her.” The two connected in 2018 before meeting in person the following year. That was also the year that Traylor had a heart attack.
“We had a chance to really connect during the [COVID-19] pandemic,” Covin says. “We had time to really get to know one another, and we became very close. She was very supportive of me while I was pregnant. I am very supportive of her as she continues recovery from her heart attack.”
Traylor says her connection with Covin isn’t about trauma. In fact, they didn’t really start learning about each other’s HIV journey until after the documentary. “We didn’t realize that we don’t even talk about our HIV diagnosis,” Traylor says. “But we would check in on our meds and going to the doctor.”
They bond over motherhood, being Black women and their shared work. They’re both involved with The Well Project, an HIV organization focused on women and girls at risk for and living with the virus.
“To be so heavily involved in this work, there’s a connection
“I’m so grateful for the opportunities that have come and the women that we have reached,” Covin says. “The person that was sitting at home thinking they’re the only one in the world living with HIV has something to relate to. That brings joy to my heart.”
Traylor encourages anyone who watches the documentary to stay put through the credits, not only to hear the beautiful song “Unexpected Truth” but also to see two additional clips from Covin. She expresses her disappointment about negative comments about sexually transmitted infections made specifically by women, Black women and people with kids who have had sexually transmitted infections.
“It’s my favorite part of the film,” Traylor says. “She goes, ‘Women, I thought we all cared about bodily autonomy. Oh, I guess it’s only if you’re not living with HIV.’”
THE LADIES HOPE THAT AFTER VIEWING THE short film, folks will feel inspired, empowered and motivated to use their voices to make change.
“Living with HIV has been the opposite of everything that I thought,” Covin says. “I didn’t think that life could still be beautiful. I didn’t think that anybody would love me anymore or that I would be able to have children.”
For Covin, HIV hasn’t stopped her from living her life. Your life doesn’t end after a diagnosis, but it does change.
“Take it one day at a time,” she says. “Slow down, and after a while, it seems like everything works out all right.”
Traylor wants people to know that she lives a “pretty dope life with HIV.” It’s a mantra inspired by a comment made by a close friend who was impressed by what she was doing.
“My life has always been very meaningful and purposeful, with or without HIV,” Traylor says. “It’s a dope life no matter what. I have HIV, but I get to create what’s possible for my life.” Q
