
Breaking The Silence: My Father's Hidden Secret
It's safe to say that almost every family has probably hidden something from others, and maybe even one another, out of fear, shame, self-protection or even love. Not everyone feels the press of those reasons so acutely that the silence threaded into the secret-keeping lingers long after the secret has been revealed and becomes a crushing burden, eventually too difficult to carry.
But I did.
In 1985, when I was just 13 years old, my 42-year-old surgeon father underwent a quadruple bypass after suffering a heart attack. Eight months later, he received the news that the transfused blood he'd been given during surgery was contaminated with HIV and he'd contracted the virus.
Almost 40 years later, those who contract HIV can live long, healthy lives with the help of medication. But in 1985, being diagnosed with the disease was nothing less than catastrophic — a nearly certain death sentence.
AIDS was still a mystery back then. Misinformation, ignorance, bigotry and stigma fueled people's views. We lived in a frightened society — one that largely believed people diagnosed with HIV were responsible for their own infection.
In a feature piece in the fall of 1985, Time magazine called people with AIDS 'The New Untouchables.' Inconsistent and conflicting messages about how HIV spread made people afraid to even come into contact with someone infected with the virus. Many individuals known to be HIV positive or to have AIDS lost their jobs, their homes and the support of their friends and neighbors.
Making matters worse were members of the evangelical Christian right who were among the loudest voices about AIDS in the 1980s and early '90s, claiming it was a weapon of God's wrath. Jerry Falwell, an influential Southern Baptist preacher, televangelist and founder of the Moral Majority political organization, declared, 'AIDS is not just God's punishment for homosexuals; it is God's punishment for the society that tolerates homosexuals.' Conservative commentator Pat Buchanan, a close adviser to President Ronald Reagan, called AIDS 'nature's revenge on homosexuals.'
This harmful theology played a considerable role in the way my father coped with his diagnosis. As a devout Christian who'd grown up in a fundamentalist church tradition that believed homosexuality was a sinful lifestyle choice, he struggled to reconcile his situation with society's and the evangelical church's stance on his disease and its causes. He feared for his personal reputation.
Though he was an accomplished physician, he felt disempowered by the limitations of his — and the greater health system's — knowledge about the facts of HIV. The only certainties were that the disease spread at a rapid rate and there was no cure. He expected, like most patients he knew or knew about, that he could die at any time in any number of terrible ways.
My father was unwilling to chance infecting his patients, and he made the painful choice to end his medical practice, taking an advisory position in a national medical legal association. He refused to allow my mother, brothers or me to endure any form of ostracism because of his HIV status. His illness would be a secret.
When my parents first found out about Dad's infection, they didn't tell me. They did, I know now, tell my two older brothers, but they left me and my younger brother out of the conversation.
Trauma researchers say that our brains can hide experiences to protect us from having to relive them. To protect us from overwhelming fear or stress that is tied to them. Sometimes those experiences remain hidden forever. Maybe this is what happened to me, because even though how I knew remains a baffling hole in my memory, I knew Dad had AIDS within days of his diagnosis.
As I felt my world being upended with this unwanted knowledge, I took inventory of the facts:
The news was flooded with stories of people, mostly gay men, developing horrible illnesses because of the virus.
Magazine covers on newsstands described AIDS with words like 'plague' and 'epidemic' and 'threat.'
Parents picketed outside schools carrying signs with hateful slogans to keep away children who'd tested positive for the disease.
A group of boys in my eighth-grade class had started bullying other kids on the playground with the taunt, 'Careful not to get too close to him. You might get AIDS!'
Some people at church had said God was using this disease to launch his revenge on sinners.
AIDS had no cure.
Since no one was talking about any of it with me, I understood I couldn't talk about it either.
I couldn't talk about this thing that had stolen my sense of security and safety. I couldn't talk about how sad I was. How alone I felt. How confused. Terrified. I couldn't tell anyone about the nights when sleep refused to come and I'd sit with my back pushed into the wooden headboard of my bed, my knees squeezed against my chest, clutching my bedspread to my chin. I stared into the darkness, my eyes burning with the strain of trying to glimpse the thing hiding just beyond where I could see. The thing hovering over everything. I tried, but failed, to shut down the blur of frightening thoughts and images that cartwheeled through my brain as I imagined all of the possible ways Dad would die.
Dad lived for 10 more years.
With no road map for these circumstances, my parents were desperate to keep life as normal as possible for my brothers and me, and they hoped, I think, that not talking much about Dad's illness would protect us (even after it was clear to them that I knew). I understood that not talking about the pain I was feeling would protect them. So we all learned to pretend.
Pretending was easy. Even though Dad developed AIDS after five years and suffered (I learned much later) one opportunistic infection after another, until the final year of his life, he didn't look sick. He didn't look different from any other dad I knew. Most days he could get up, put on a suit and go to work. He mowed the lawn and weeded the garden on weekends. He downhill skied and ice-skated and swam and boated. He took our golden retriever on long walks. Life moved forward, and we moved with it.
Just beyond the façade, though, the anguish of our circumstances hung heavy in the air. I could see my beloved dad, the man whose charisma and brilliance had always made him seem larger than life to me, shrinking beneath the stigma and shame of his illness. My dear mom, who shouldered the bulk of Dad's physical and emotional care on her own, bent with the burden. We were all suffering, but the culture of silence created by the secret kept us from sharing in that aching grief together. Instead, we each traveled our own lonely paths of coping.
Two years before he died, Dad started writing a book. It began as a personal, therapeutic attempt to try to understand the mess of what had happened to him. As his narrative took shape, he read passages to my mother, and she added thoughts of her own. An idea bloomed between them: Maybe they had something to say. Maybe their experience living with HIV and AIDS could help someone else. Maybe their unique story could dispel some of the myths that swirled in the AIDS climate of the early 1990s and add a different voice to the mix. Maybe, as Christians themselves, they could call out the Christian community for its destructive and narrow-minded views toward victims of this devastating illness and encourage a more loving, Christ-like response in the face of suffering, no matter what form it takes. Maybe their story mattered enough to break a nine-year silence and spill their secret. Our secret.
I treaded carefully around the concept of the book. I knew how risky writing it was for Dad. To me, the endeavor felt precarious, like a fragile cord being woven together, thin thread by thin thread, to create a lifeline that might finally pull us out of our isolation.
The book was published in 1995, six months before Dad died. My parents had broken free of the secrecy, experiencing the relief of finally talking to others about what they'd endured. And when it ended up on the Globe and Mail's bestseller list for a couple of weeks, they were met with an outpouring of support from friends and strangers. Support that bolstered them in the final months of Dad's life.
Ironically, though, the book's contents remained largely unspoken within my family circle. By then I was newly married and living a thousand miles away. Lost somewhere in that distance and physical separation was the permission I believed I needed to break free, too — the new set of family rules that would help me navigate a world where the secret was no longer necessary. I packed away the fear, the grief, the loss, the anger, the confusion, the shame, and I kept on pretending.
My silence hung on for two more decades until I just couldn't carry all of those stored emotions anymore. Pretending wasn't doing me or anyone else any good. I wasn't OK, and I hadn't been OK for a long time. So without having any idea where the tandem endeavors might lead, I started therapy and I started writing.
The road to finding the answer to what happened to me was a long and painful one. I had to look back at that moment that divided my life into a before and an after. I had to dig into memories of living in the after that sometimes felt too hard to face. Felt too frightening to reveal. That sometimes made me feel like looking at them would actually kill me. I had to pull back the curtain on the shame and fear that were still embedded in me and give them words. With the careful guidance and support of writing mentors and an excellent therapist, I finally figured out how.
Until then, I realized, I had never truly been myself. All those unspeakable things stood directly in the way. Replacing that long-held silence with an honest recounting of the experience helped break down that barrier.
My path to processing and finding meaning in my family's experience is carved in words. For my mother and brothers, it has taken different shapes. Two of my brothers are physicians, following in Dad's footsteps and making his calling to caring for others in their times of suffering their own. My oldest brother is the president of a global relief organization that works specifically with marginalized communities around the world, many of which have been devastated by HIV/AIDS. After my father died, my mother changed careers and worked for a time as a family therapist, channeling her compassion and lived experience of loneliness and isolation to offer companionship to others coping with difficult circumstances.
These days, I stand directly in front of readers of my story, speaking with a confidence I've never felt before. Sometimes it's to a room so packed that extra chairs are needed. On other nights, just a single soul shows up. But each time, I feel a deep sense of connection to those in attendance. I have no idea the specific stories or suffering carried by those who read my book or who raise a hand at an event and nudge the topic of spilling the secret. I can only know what I've carried and speak authentically about how good it feels to put it down. I can only hope that my words might help someone else put their unspoken burdens down, too.
Melanie Brooks is the author of 'A Hard Silence: One Daughter Remaps Family, Grief, and Faith When HIV/AIDS Changes It All' (Vine Leaves Press, 2023) and 'Writing Hard Stories: Celebrated Memoirists Who Shaped Art From Trauma' (Beacon Press, 2017). She teaches professional writing at Northeastern University and creative nonfiction in the MFA program at Bay Path University in Massachusetts. She holds an MFA in creative nonfiction from the University of Southern Maine's Stonecoast writing program and a Certificate of Narrative Medicine from Columbia University. Her work has appeared in The Boston Globe, Psychology Today, Yankee Magazine, The Washington Post, Ms. magazine and other notable publications. She lives in New Hampshire with her husband, two children (when they are home from college) and a chocolate Lab.
Hashtags

Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles


Health Line
9 hours ago
- Health Line
HIV Progress Report: Are We Close to a Cure?
HIV can be effectively managed with viral suppression, but there's currently no cure. The medical community is hopeful that new advancements in treatments and a vaccine may soon lead to a cure. HIV weakens the immune system and hinders the body's ability to fight disease. Without treatment, HIV could lead to stage 3 HIV, known as AIDS. The AIDS epidemic began in the United States in the 1980s. The World Health Organization (WHO) estimates that more than 44.1 million people worldwide have died from the condition. There's currently no cure for HIV, but many clinical studies are dedicated to researching a cure. The current antiretroviral treatments allow people living with HIV to prevent its progression and live normal life spans. Great strides have been made toward the prevention and treatment of HIV, thanks to: scientists public health officials governmental agencies community-based organizations HIV activists pharmaceutical companies This article looks at new advancements in treatment and research milestones that may ultimately lead to a cure for HIV. Developing an HIV vaccine The development of a vaccine for HIV would save millions of lives. However, researchers haven't yet discovered an effective vaccine for HIV. Research into vaccines is ongoing throughout the world. Every year, there are new discoveries. In 2019, researchers at the University of Pittsburgh announced they had developed a promising treatment allowing them to: engineer certain immune system cells to reactivate HIV in cells that contain inactive (latent) HIV use another set of engineered immune system cells to attack and remove cells with reactivated HIV Their findings could provide the foundation for an HIV vaccine. Research on an investigational HIV vaccine conducted by the HIV Vaccine Trials Network (HVTN) that began in 2019 was stopped in 2023 due to failure to prevent HIV. Clinical trials are ongoing. Preventing transmission of HIV Although there's no HIV vaccine yet, there are other ways to protect against transmission. HIV is passed by the exchange of bodily fluids. This can happen in a variety of ways, including: Sexual contact: During sexual contact, HIV can be passed through certain fluids, including blood, semen, or anal and vaginal secretions. Having other sexually transmitted infections (STIs) can increase the risk of HIV transmission during sex. Shared needles and syringes: Needles and syringes used by a person with HIV may contain the virus, even if there's no visible blood on them. Pregnancy, delivery, and nursing: People with HIV can pass the virus to their babies before and after birth. But in instances where HIV medication is used, this is extremely rare. Taking certain precautions may protect a person from contracting HIV: Get tested for HIV. Ask sexual partners about their status before having sex. Get tested and treated for STIs. Ask sexual partners to do the same. When engaging in oral, vaginal, and anal sex, use a barrier method such as condoms every time (and use it correctly). If injecting drugs, use a new, sterilized needle that hasn't been used by anyone else. Preexposure prophylaxis (PrEP) Preexposure prophylaxis (PrEP) is a daily medication used by people without HIV to lower their chances of contracting HIV if exposed. It's highly effective in preventing the transmission of HIV in anyone with known risk factors. Populations at risk include: men who have sex with men, if they have had anal sex without using a condom or have had an STI in the last 6 months anyone who does not use a barrier method regularly and has partners who have an increased risk of HIV or an unknown HIV status anyone who has shared needles or used injected drugs in the last 6 months people who are having sex without a condom or other barrier method with partners who are living with HIV According to the Centers for Disease Control and Prevention (CDC), PrEP can reduce the risk of contracting HIV from sex by around 99% in people with known risk factors for HIV. For PrEP to be effective, it must be taken daily and consistently. Everyone at risk for HIV should begin a PrEP regimen, according to a recent recommendation from the U.S. Preventive Services Task Force. Postexposure prophylaxis (PEP) Postexposure prophylaxis (PEP) is a combination of emergency antiretroviral drugs. It's used after someone may have been exposed to HIV. Healthcare professionals may recommend PEP in the following situations: someone thinks they may have been exposed to HIV during sex (e.g., the condom broke or no condom was used) a person has shared needles when injecting drugs someone has been sexually assaulted PEP should only be used as an emergency prevention method. It must be started within 72 hours of possible exposure to HIV. Ideally, PEP is started as close to the time of exposure as possible. PEP typically involves a month of adherence to antiretroviral therapy. Accurate diagnosis of HIV Diagnosing HIV is a vital step toward preventing HIV transmission. In 2021, approximately 13% of the 1.2 million people over age 13 did not know their HIV status. There are several blood tests that healthcare professionals can use to screen for HIV. HIV self-tests allow people to test their saliva or blood in a private setting and receive a result within 20 minutes or less. Treatment steps for HIV Thanks to advances in science, HIV is considered a manageable chronic disease. Antiretroviral treatment allows people living with HIV to maintain their health. It also reduces their risk of passing the virus to others. According to UNAIDS, around 77% of all people with HIV in 2024 were receiving treatment. The medications used to treat HIV do two things: Reduce viral load: The viral load is a measure of the amount of HIV RNA in the blood. The goal of HIV antiretroviral therapy is to reduce the virus to an undetectable level. Allow the body to restore its CD4 cell count to normal: CD4 cells are responsible for protecting the body against pathogens that can cause HIV. There are several types of HIV drugs: Non-nucleoside reverse transcriptase inhibitors (NNRTIs) disable a protein that HIV uses to make copies of its genetic material in the cells. Nucleoside reverse transcriptase inhibitors (NRTIs) give HIV faulty building blocks, so it can't make copies of its genetic material in the cells. Protease inhibitors disable an enzyme HIV needs to make functional copies of itself. Entry or fusion inhibitors prevent HIV from entering the CD4 cells. Integrase inhibitors prevent integrase activity. Without this enzyme, HIV cannot insert itself into the CD4 cell's DNA. HIV medications are often taken in specific combinations to prevent the development of drug resistance. HIV medications must be taken consistently to be effective. An HIV-positive person should talk with their healthcare team before switching medications to reduce side effects or because of treatment failure. Viral suppression of HIV: undetectable equals untransmittable Achieving and maintaining an undetectable viral load (viral suppression) through antiretroviral therapy effectively eliminates the risk of passing HIV to a sexual partner. A 2016 study found no instances of HIV transmission from a persistently virally suppressed HIV-positive partner to an HIV-negative partner. Another 2016 study followed thousands of mixed-status couples over several years. There were thousands of instances of sex without condoms. With awareness that U=U — 'undetectable equals untransmittable' — comes a greater emphasis on 'treatment as prevention (TasP).' UNAIDS had a '90-90-90' goal to end the AIDS epidemic. By 2020, this plan aimed for: 90% of all people living with HIV to know their status 90% of all people diagnosed with HIV to be on antiretroviral medication 90% of all people receiving antiretroviral therapy to be virally suppressed Was this goal met? No, this goal was not met worldwide. According to a 2020 study, South Africa was on track to achieve the first but was 20% points below the second one among people who knew their HIV status. They were close to the third, but variation by age and sex had to be taken into account. UNAIDS has a new goal of achieving 95-95-95 by 2030. The organization reports that a few places have already hit this goal. Milestones in HIV research Researchers are hard at work looking for new drugs and treatments for HIV. They're hoping to find therapies that extend and improve the quality of life for people with this condition. Additionally, they hope to develop a vaccine and discover a cure for HIV. Here's a brief look at several important avenues of research. Monthly injections A monthly HIV injection combines two drugs: the integrase inhibitor cabotegravir (Apretude) and the NNRTI rilpivirine (Edurant). Research has found that the monthly injection of cabotegravir and rilpivirine (Cabenuva) was as effective at suppressing HIV as the typical daily regimen of three oral medications. Injectable PrEP The FDA approved a long-acting injectable form of PrEP in December 2021. Unlike the pill, which must be taken daily, the injection is given every two months. Research has found that injectable PrEP effectively prevents the contraction of HIV. This is the first and only medication of its kind. Targeting HIV reservoirs Part of what makes discovering a cure for HIV difficult is that the immune system has trouble targeting reservoirs of cells with HIV. The immune system usually can't recognize cells with HIV or eliminate cells actively reproducing the virus. Antiretroviral therapy doesn't eliminate HIV reservoirs. Researchers are exploring two different types of HIV cures, both of which would potentially destroy HIV reservoirs: Functional cure: This type of cure would control the replication of HIV in the absence of antiretroviral therapy. Sterilizing cure: This type of cure would completely eliminate the virus capable of replicating. Breaking apart the HIV virus Researchers at the University of Illinois at Urbana-Champaign have been using computer simulations to study the HIV capsid. The capsid is the container for the virus's genetic material. It protects the virus from being destroyed by the immune system. Understanding the makeup of the capsid and how it interacts with its environment may help researchers find a way to break it open. Breaking the capsid could release HIV's genetic material into the body, where the immune system can destroy it. It's a promising frontier in HIV treatment and cure. 'Functionally cured' Timothy Ray Brown, an American who once lived in Berlin, received an HIV diagnosis in 1995 and a leukemia diagnosis in 2006. He's one of two people sometimes referred to as 'the Berlin patient.' In 2007, Brown received a stem cell transplant to treat the leukemia and stopped antiretroviral therapy. HIV hasn't been detected in him since that procedure was performed. Studies of multiple parts of his body at the University of California, San Francisco, have shown him to be free of HIV. He's considered 'effectively cured,' according to a 2013 study. He's the first person to be cured of HIV. Research from 2019 was made public on two other men who had received diagnoses of both HIV and cancer. Like Brown, both men received stem cell transplants to treat their cancer. Both men also stopped antiretroviral therapy after receiving their transplants. At the time the research was presented, 'the London patient' had been able to remain in HIV remission for 18 months and counting. 'The Dusseldorf patient' had been able to remain in HIV remission for 3 1/2 months and counting. Research from 2022 mentioned a middle-aged woman who identified as mixed race had been living in HIV remission since 2017 after receiving stem cell transplants. She's referred to as the 'New York patient' and is the first woman of color to achieve HIV remission. Takeaway Researchers barely understood HIV more than 40 years ago, let alone how to treat or cure it. Over the decades, advances in technology and medical capabilities have brought more advanced HIV treatments. Successful antiretroviral treatments can now halt HIV's progression and decrease a person's viral load to undetectable levels. Having an undetectable viral load not only improves the health of a person with HIV but also eliminates the risk of transmitting HIV to a sexual partner. Targeted drug therapy can also prevent pregnant people with HIV from passing the virus to their children. Each year, hundreds of clinical trials aim to find even better treatments for HIV in the hopes of one day finding a cure.


Health Line
9 hours ago
- Health Line
HIV Tests
Key takeaways HIV testing is crucial because a significant percentage of Americans living with HIV are unaware of their condition, leading to delayed treatment and potential transmission to others. The CDC recommends routine screenings as part of standard healthcare. Various tests, including rapid at-home options and laboratory tests, can diagnose HIV by detecting antibodies or the virus itself. Fourth-generation tests can detect HIV earlier than previous versions. For individuals diagnosed with HIV, ongoing monitoring through CD4 counts and viral load measurements is essential to track the disease's progression and the effectiveness of treatment and to prevent transmission to others. Why is HIV testing important? According to the Centers for Disease Control and Prevention (CDC), roughly 1.2 million Americans lived with HIV by the end of 2019. And about 13 percent of people living with HIV do not know they've contracted the virus. In addition to not getting the treatment they need, they can unknowingly transmit the virus to others. In fact, almost 40 percent of new HIV cases are transmitted by people who are undiagnosed. The CDC's recommendations for HIV testing advise healthcare professionals to provide routine screenings for HIV as a part of standard care regardless of any risk factors. Despite these recommendations, many Americans have never been tested for HIV. Anyone who hasn't been tested for HIV should consider asking their healthcare professional for a test. They can also seek free and anonymous HIV testing at a nearby clinic. Visit the CDC's GetTested website to find a local testing site. Who needs HIV testing? The CDC advises that routine HIV testing should be provided in all healthcare settings, especially if testing for other sexually transmitted infections (STIs) at the same time. People engaging in behaviors that put them at an increased risk for contracting HIV should be tested at least once a year. Known risk factors include: having multiple sexual partners engaging in sex without a condom or barrier method and without pre-exposure prophylaxis (PrEP) having partners with an HIV diagnosis injecting drugs HIV testing is also recommended: before a person begins a new sexual relationship if a person learns that they're pregnant if a person has symptoms of another sexually transmitted infection (STI) An HIV infection is now considered a manageable health condition, especially if treatment is sought early. If a person contracts HIV, early detection and treatment can help: improve their frame of mind lower their risk of disease progression prevent the development of stage 3 HIV, or AIDS It can also help reduce their risk of transmitting the virus to other people. The life expectancy of people with an HIV diagnosis who start treatment early is the same as those without the virus. People who know that they've been exposed to HIV should seek care as soon as possible. In some cases, if they're treated within 72 hours, their healthcare professional may prescribe post-exposure prophylaxis (PEP). These emergency medications may help reduce their chances of contracting HIV after they've been exposed to it. What tests are used to diagnose HIV? A number of different tests can be used to check for HIV. These tests can be performed on blood samples or saliva samples. Blood samples can be obtained via an in-office finger prick or a blood draw in a laboratory. Not all tests require a blood sample or a visit to a clinic. In 2012, the Food and Drug Administration (FDA) approved the OraQuick In-Home HIV Test. It's the first rapid test for HIV that can be performed at home using a sample from a swab inside your mouth. If a person thinks they've contracted HIV, it can take anywhere from 1 to 6 months after transmission for a standard HIV test to produce positive results. These standard tests detect antibodies to HIV rather than the virus itself. An antibody is a type of protein that fights off pathogens. According to Avert, third-generation HIV tests — which are ELISA tests — can only detect HIV 3 months after exposure to the virus. This is because it generally takes 3 months for the body to produce a detectable number of antibodies. Fourth-generation HIV tests, which look for antibodies and the antigen p24, can detect HIV 18 to 45 days after transmission. Antigens are substances that cause an immune response in the body. According to the Centers for Disease Control and Prevention, 97 percent of people with HIV produce a detectable number of antibodies within 3 months. Although it may take 6 months for some to produce a detectable amount, this is rare. If a person thinks they've been exposed to HIV, they should tell their healthcare professional. A viral load test that directly measures the virus can be used to detect whether someone has recently acquired HIV. What tests are used to monitor HIV? If a person has received an HIV diagnosis, it's important for them to monitor their condition on an ongoing basis. Their healthcare professional can use several tests to do this. The two most common measures for assessing HIV transmission are CD4 count and viral load. CD4 count HIV targets and destroys CD4 cells. These are a type of white blood cell found in the body. Without treatment, the CD4 count will decrease over time as the virus attacks the CD4 cells. If a person's CD4 count decreases to fewer than 200 cells per cubic millimeter of blood, they'll receive a diagnosis of stage 3 HIV, or AIDS. Early and effective treatment can help a person maintain a healthy CD4 count and prevent the development of stage 3 HIV. If treatment is working, the CD4 count should remain level or increase. This count is also a good indicator of overall immune function. If a person's CD4 count drops below particular levels, their risk of developing certain diseases increases substantially. Based on their CD4 count, their doctor may recommend prophylactic antibiotics to help prevent these infections. Viral load Viral load is a measure of the amount of HIV in the blood. A healthcare professional can measure the viral load to monitor the effectiveness of HIV treatment and the status of the disease. When a person's viral load is low or undetectable, they're less likely to develop stage 3 HIV or experience its associated immune dysfunction. A person is also less likely to transmit HIV to others when their viral load is undetectable. People with undetectable viral loads should still continue to use condoms and other barrier methods during sexual activity to prevent transmission to others. Drug resistance A healthcare professional may also order tests to learn if a strain of HIV is resistant to any medications used in treatment. This can help them decide which anti-HIV drug regimen is most appropriate. Other tests A medical professional may also use other tests to monitor someone for common complications of HIV or side effects of treatment. For example, they may order regular tests to: monitor liver function monitor kidney function check for cardiovascular and metabolic changes They may also perform physical exams and tests to check for other illnesses or infections associated with HIV, such as: A CD4 count below 200 cells per cubic millimeters isn't the only sign that HIV has progressed to stage 3 HIV. Stage 3 HIV can also be defined by the presence of certain opportunistic illnesses or infections, including: fungal diseases, such as coccidioidomycosis or cryptococcosis candidiasis, or yeast infection, in the lungs, mouth, or esophagus histoplasmosis, a type of lung infection Pneumocystis jiroveci pneumonia, which was previously known as Pneumocystis carinii pneumonia recurrent pneumonia tuberculosis mycobacterium avium complex, a bacterial infection chronic herpes simplex ulcers, lasting longer than one month isosporiasis and cryptosporidiosis, intestinal diseases recurrent salmonella bacteremia toxoplasmosis, a parasitic infection of the brain progressive multifocal leukoencephalopathy (PML), a brain disease invasive cervical cancer Kaposi sarcoma (KS) lymphoma wasting syndrome, or extreme weight loss Continuing HIV research As testing advances, researchers are hoping to find pathways to a vaccine or a cure in the coming years. As of 2020, there are over 40 approved antiretroviral drugs on the market with new formulations and methods being researched all the time. Current testing only detects markers of the virus as opposed to the virus itself, but research is finding ways the virus can hide in immune system cells. This discovery is allowing for better understanding and more insight into an eventual vaccine. The virus mutates rapidly, which is one of the reasons it's a challenge to suppress. Experimental therapies such as a bone marrow transplant to treat lymphoma using stem cells are being tested for treatment potential.


Health Line
9 hours ago
- Health Line
HIV Diet and Nutrition: Here's What You Should Know
Key takeaways People with HIV need to prioritize a nutrient-rich diet because they typically have increased energy needs and are more prone to nutrient deficiencies compared to the general population. To avoid foodborne illnesses, individuals with HIV should practice food safety by avoiding raw meats and unpasteurized dairy, as well as thoroughly washing fruits and vegetables. While there isn't a specific diet for HIV, a balanced intake of protein, healthy fats, and fiber, along with supplements like omega-3s and Vitamin D, may help manage ART side effects and improve overall health; it's important to consult healthcare professionals before starting any new supplements. The human immunodeficiency virus (HIV) is a chronic type of retrovirus that can cause acquired immunodeficiency syndrome (AIDS). AIDS is the last stage of the HIV virus (1). HIV attacks the body's immune system, destroying white blood cells that are needed to fight off infections (2). HIV treatment has come a long way, and people with HIV can live long and healthy lives if medication, including antiretroviral therapy (ART) medications, are accessible and taken as prescribed. In addition to ART, many people with HIV are interested in natural ways to support their health, including diet and supplementation. This article reviews the role of diet and supplementation in HIV-positive populations and gives recommendations for how to support overall health while living with HIV. The relationships between HIV and nutrition Nutrients, including protein, vitamins, and minerals, are necessary for the proper functioning of the body, including the immune system. That's why it's important for all people, regardless of HIV status, to consume a varied diet that provides an array of nutrients. A well-rounded diet can help support the health of the immune system and can reduce the risk of malnutrition. HIV-positive people have higher needs for certain nutrients and are more likely to experience nutrient deficiencies than the general population. Plus, some nutrients are especially important for those with HIV, as they play an essential role in immunity and may help reduce side effects of ART (3). People with HIV are at a higher risk for malnutrition People with HIV are at higher risk for becoming malnourished compared with the general population: energy needs are around 10% higher in those with asymptomatic HIV and 20–30% higher in those with symptomatic HIV (4). A 2019 study that included 812 HIV-positive people found that 11.45% of the participants were at some risk for malnutrition. The risk of malnutrition was higher in older adults and females. Hispanic participants also had a higher risk compared with Black and white participants (4). That may mean that people with HIV — even those who are asymptomatic — have higher overall needs for calories and nutrients, including protein. Although it's recognized that people with HIV have higher protein needs than people who don't have HIV, there are currently no guidelines for protein intake for people living with HIV. According to older research, some experts recommend .45–.63 grams of protein per pound (1–1.4 g/kg) of bodyweight for HIV-positive people maintaining weight and muscle mass and .68–.9 grams per pound (1.5–2 g/kg) for HIV-positive people gaining weight and muscle mass (5). Other studies have shown that nutritional supplements containing high amounts of protein can help people with HIV gain muscle mass and bodyweight (6, 7). Plus, older research suggests that protein supplements may help improve immune function by increasing levels of certain blood cells that help fight infections, including CD4 lymphocytes (6, 8). HIV attacks and destroys CD4 cells, which is why we use CD4 counts to assess the health of HIV-positive folks. People with HIV are at a higher risk of nutrient deficiencies People with HIV are more likely to be deficient in certain nutrients compared with the general population. That's likely due to immune dysfunction, higher nutrient needs, nutrient malabsorption, and ART-related side effects (9, 10, 11, 12). Studies over time show that people with HIV are more likely to be deficient in many vitamins and minerals, including vitamin D, B12, folate, selenium, vitamin E, B6, and more (9, 10, 11, 12). For example, numerous studies have demonstrated that HIV-positive people are at a significant risk of being deficient in vitamin D, which can negatively impact immune function (13). Plus, vitamin D deficiency in people with HIV has been associated with bone disease, depression, high blood pressure, and infections (10). Fortunately, research suggests that supplementing with vitamin D can replenish vitamin D levels and help improve markers of immune function, including CD4 counts (14). Supplementation with a multivitamin or single-nutrient supplements may be helpful for those with HIV, as they can help treat deficiencies and support people with HIV in maintaining optimal nutrient levels. However, it's best for those with HIV to come up with a personalized supplement regimen with a team of healthcare professionals, since HIV-positive people have different nutrient needs depending on factors like diet, sex, age, and severity of disease. If you have HIV, healthcare professionals can order bloodwork to assess levels of certain nutrients, such as vitamin D and B12, and make appropriate supplement recommendations based on your results. Proper nutrition may help decrease ART-related side effects and improve treatment efficacy A nutrient-dense diet may help reduce the risk of HIV medication -related side effects and improve treatment efficacy in people with HIV. Some ARTs interfere with the body's ability to metabolize glucose (sugars) and fats as well as negatively affect bone health, which may lead to increased risk of heart disease, type 2 diabetes, and decreased bone mineral density (15, 16, 17). That is why it's important for people with HIV taking ARTs to follow a healthy, balanced diet and supplement with certain nutrients when appropriate. A diet rich in protein, healthy fats, and fiber could help improve ART- and HIV-related side effects like insulin resistance and high blood fat levels (17, 18). For example, a balanced, high fiber, low glycemic index diet may help reduce blood fat levels and support healthy insulin and blood sugar regulation (19). What's more, supplementation with nutrients like vitamin D can help reduce ART-related complications like decreased bone mineral density (16). Summary People living with HIV have higher energy needs and face higher risks of developing nutrient deficiencies compared with the general population. ART can also lead to side effects like decreased bone mineral density and high blood lipid levels. How to prevent HIV-associated weight loss Energy (caloric) needs are around 10% higher in those with asymptomatic HIV and 20–30% higher in those with symptomatic HIV (4). These increased energy needs can make it harder for those with HIV to gain and maintain bodyweight and muscle mass. Notably, one study found that the risk of malnutrition was significantly higher in specific groups of people with HIV, including older adults, females, and Hispanic people (4). What's more, for HIV-positive people experiencing food insecurity, the risk of malnutrition is even higher, according to older research studies (20, 21, 22). Malnutrition is associated with poor physical and mental health and poorer clinical outcomes in people with HIV (22). Because HIV increases overall energy needs, it's important for those living with this condition to follow a balanced diet, including regular meals and snacks, in order to prevent weight loss. That's essential for all HIV-positive people, regardless of whether they're experiencing symptoms. Although there's no set protein intake guidelines for people with HIV, a higher protein diet appears to help promote muscle mass gain and maintenance (23). Adding a source of protein to all meals and snacks can help ensure that you're meeting daily protein needs. Examples of protein sources include chicken, fish, eggs, and beans. Incorporating a protein powder supplement into the diet can also help people with HIV increase their daily protein needs. Making a smoothie or protein shake with other nutrient-dense ingredients like nut butter, Greek yogurt, and berries can be a simple way to improve overall diet quality. It's important to note that people with HIV have varying nutrient needs, so there's no one-size-fits-all diet when it comes to promoting overall health and supporting a healthy body weight. Whenever possible, it's helpful to get personalized advice from a medical professional like a registered dietitian. Summary People with HIV have higher nutrient needs, which increases the risk of weight loss and malnutrition. Eating regular, balanced meals and snacks can help support a healthy body weight and cover nutritional needs. Do people with HIV need to follow a specific diet? It's clear that eating a nutritious diet high in vitamins, minerals, fiber, healthy fats, and protein is important for people living with HIV. Following a healthy diet can help support healthy body weight maintenance, immune health, mental health, and more. However, there's currently no specific dietary pattern recommended for all HIV-positive people. Yet, because HIV compromises the immune system, food safety is important for those living with this condition (24). Food safety People living with HIV face greater risks of developing foodborne illnesses (food poisoning), so certain precautions should be taken in order to minimize those risks. The United States Department of Health and Human Services recommends that HIV-positive folks avoid foods likely to cause foodbourne illness, including raw eggs, raw meat, unpasteurized dairy, and raw seafood. It's also advised to wash fruits and vegetables thoroughly before eating (25). Ways to help protect against foodborne illness include (25, 26): using a separate cutting board when preparing meat cooking foods like meat thoroughly refrigerating perishable foods within two hours of cooking or purchasing washing hands and utensils thoroughly after food preparation paying special attention to the quality of water you drink Nutrient-dense dietary patterns to consider In addition to minimizing foodborne illness risks, it's recommended that folks with HIV follow a diet high in nutritious foods that provide an array of nutrients, including vegetables, fruits, protein-rich foods like fish, and healthy fats like avocados, olive oil, nuts, and seeds. Following a balanced diet can help minimize the risk of nutrient deficiencies and make sure your body gets sufficient amounts of protein, vitamins, minerals, and other important nutrients needed for immune function, muscle mass maintenance, and more. It should be noted that some HIV-positive people experience diarrhea and other symptoms due to ART side effects, pathogens, and HIV-related intestinal damage. Your healthcare team can prescribe medication to help reduce these symptoms and may recommend a special diet to help treat the diarrhea, whether it's chronic or short-term. Staying hydrated by drinking plenty of fluids is essential for everyone, including those with HIV. It becomes even more important if you're also experiencing prolonged diarrhea, as it can lead to dehydration and other complications (27). If you're experiencing diarrhea or other gastrointestinal symptoms, it's important to visit a healthcare professional so you can get appropriate treatment. Lastly, people with HIV are at greater risk of developing certain health conditions. In fact, your risk of developing type 2 diabetes may be 4 times greater if you have HIV (17). People with HIV are also more likely to develop heart disease (28). Following a nutritious diet high in fiber, protein, and healthy fats may help reduce the risk of HIV-related health complications by improving blood sugar regulation, reducing blood lipid levels, and maintaining a healthy bodyweight. What about supplements? Every person with HIV has different needs and may benefit from different supplement regimens based on factors like dietary intake, nutrient deficiencies, and disease severity. Some evidence suggests that some dietary supplements may be helpful for improving certain aspects of health in people living with HIV. For example, one review of nine studies found that omega-3 supplements significantly reduced triglyceride levels and increased heart-protective high density lipoprotein (HDL) cholesterol in HIV-positive people (29). A 2019 review that included 6 studies found some evidence that supplementation with 200 mcg of selenium per day over 9–24 months may help delay the decline of CD4 counts in people with HIV (30). Vitamin D supplementation can help increase vitamin D levels in the body and has also been shown to reduce inflammation, protect bone health, and improve CD4 levels (31). Supplementing with zinc, B12, folate, calcium, and other nutrients may also be helpful for those with HIV (32, 33, 34). However, everyone living with HIV has different needs, so it's important to develop a personalized supplement regimen with healthcare professionals. They can help you choose supplements that may be most helpful for you and can also recommend appropriate dosing. It's important for those with HIV to discuss all supplements with their healthcare team. Some dietary supplements, including herbs like St. John's Wort and nutrients like vitamin C and some forms of calcium, can significantly reduce the effects of some ARTs (35). Summary Even though there's currently no specific diet recommended for HIV-positive folks, a nutrient-dense diet high in healthy foods can help support overall health. Food safety is essential for reducing the risk of foodborne illness. Some supplements may be helpful, while others can interfere with ARTs. Other health tips for people living with HIV In addition to following a nutritious diet, supplementing with certain nutrients, and taking steps to minimize the risk of foodborne illness, there are several other ways for people with HIV to promote optimal health. Get regular exercise: Regular exercise can help reduce the risk of HIV- and ART-related complications like high blood lipid levels and muscle mass loss. It can also help improve overall quality of life and mental health (36, 37). Take care of your mental health: Living with any chronic health condition can take a toll on your mental health and overall quality of life. It's essential to take care of your mental health by practicing self-care and seeking medical attention to support any mental health concerns (38). Treat sleep-related issues: Studies show that sleep disorders are common amongst people with HIV. Sleep problems like sleep apnea and poor sleep hygiene can negatively affect your health and worsen disease progression, so checking in with a medical professional is important (39). Get help if you're experiencing food insecurity: Not getting proper nutrition can negatively affect health and worsen disease progression if you are HIV-positive. If you're experiencing food insecurity, visit this link to find a food bank in your area. Develop a plan with a qualified healthcare professional: Even though there's no specific diet recommended for people with HIV, working with a registered dietitian to develop a personalized nutrition plan can help promote optimal health. Quit smoking: Cigarette smoking is more life-threatening in people with HIV than in the general population and can lead to a number of health complications, including lung cancer. If you currently smoke, consider taking steps to quit (40). Limit alcohol intake: It's best to limit your intake of alcohol. If you have trouble drinking in moderation or stopping drinking once you've started, or if you feel that you need or rely upon alcohol, feel empowered to seek support (41, 42). Due to advancements in medical care, HIV-positive people can live long, full lives. A nutrient-dense diet, regular exercise, consistent medical care, and a healthy lifestyle can help support your overall health so you can feel your best. Summary Getting regular exercise, taking care of your mental health, quitting smoking, getting proper sleep, and working with healthcare professionals to devise a personalized wellness plan are all ways in which people with HIV can support overall health. The bottom line HIV attacks the body's immune system, destroying white blood cells that are needed to fight off infection. People with HIV have higher energy needs and are more likely to face deficiencies in key nutrients. Although there's no specific diet recommended for all HIV-positive people, following a nutrient-dense, balanced diet can help support immune function, prevent weight loss, and reduce ART and HIV-related side effects like decreased bone mineral density and insulin resistance. In addition to regular medical care and following a nutritious diet, people with HIV can further improve their overall physical and mental health by getting enough sleep, exercising regularly, and developing a personalized wellness plan with a healthcare professional.