Start here
The short version. A "Dandelion" is a person who acquired HIV at birth or in the earliest weeks of life, and who lives with HIV today as an adult. In 2023, at the largest HIV conference in the United States, this community stood up and told everyone what to call them — Lifetime Survivors and Dandelions — and asked the field to stop calling them things like perinatally infected, vertical transmission cases, or people born HIV-positive.1 The name honors the poet Mary Bowman, whose 1989-2019 body of work included the spoken-word piece "Dandelions," a tribute to her mother, who died of AIDS-related illness when Mary was three, and to everyone else living with the virus.2 Dandelions include people of every sexual orientation and gender. Straight women. Gay men. Trans people. Bisexual people. The defining characteristic is not who they love. It is that they have lived with HIV as long as they have been alive.
There are roughly 13,000 Dandelions in the United States.3 They are Gen X, millennial, and Gen Z adults. They are aging with a body that has never known a day without HIV. And they are organizing.
Language check. This page uses the community's preferred terms: Lifetime Survivors and Dandelions. It uses perinatally acquired HIV only as a clinical term for how HIV was transmitted — not as an identity. If you write, present, or provide care in HIV, please do the same.
Who Dandelions are
Dandelions are people who acquired HIV before they were old enough to remember anything else. Public health calls this perinatal acquisition: transmission from a birthing parent during pregnancy, childbirth, or (rarely, in the United States) breast or chestfeeding. A small number of Dandelions acquired HIV in early childhood from blood transfusions before universal blood-supply screening began in 1985.4
The Georgetown O'Neill Institute for National and Global Health Law describes the community as: "people who acquired HIV from their birthing parent during pregnancy, childbirth, or during breast/chest feeding, as well as those who acquired the virus via blood transfusion before 5 years of age."4 The National Institutes of Health's HIVinfo service now uses the same language: "People who acquired HIV at birth or shortly after are referred to as lifetime survivors or Dandelions."5
Dandelions live in every state. They are Black, Latino, Indigenous, Asian, white, multiracial. They are men, women, non-binary, and trans. They are parents. They are workers. They are artists. They are people navigating adulthood with a body that has always carried HIV and, for those born in the mid-1990s and after, a body that has almost always been on antiretroviral therapy. The clinical shorthand PHIV (perinatally-acquired HIV) or "lifelong HIV" describes their medical reality. It is not what they call themselves.
Scale, in one paragraph. The CDC estimates about 12,628 people were living with perinatally acquired HIV in the U.S. and dependent areas at year-end 2022.6 Because of routine prenatal HIV testing, viral-suppression treatment in pregnancy, and prophylaxis for newborns, only 42 U.S. babies were born with HIV in 2022 out of roughly 3.7 million live births — a perinatal transmission rate below 0.5%.4 The Dandelion generation is finite. Its members are middle-aged and getting older.
Where the name comes from
The name comes from a poem, and the poem comes from a woman who did not live to hear the movement built around it.
Roses were created with thorns to warn hands approaching without caution.
But dandelions were not given that option.
They were created by an all-knowing God,
and that all-knowing God created dandelions with the strength to withstand ignorance and hatred. — Mary Bowman, "Dandelions" (excerpt, as performed and archived at AIDS35: Dandelion)
Mary Bowman was a spoken-word poet from the Washington, DC area. She was born with HIV. Her mother died of AIDS-related illness when Mary was three years old. Mary was raised by her father, and she spent her whole life — twenty-nine years — carrying HIV in her body and secrecy in her family.2 She wrote "Dandelions" in her early twenties. She performed it for the first time at SpitDat, an open-mic night in DC. She was terrified. She was twenty. It was the first time she had ever said her status out loud in public.7
She wrote a body of work about growing up with HIV. In 2011, she published a collection called LOTUS that won Book of the Year at the National Underground Spoken Word Poetry Awards. In 2012, she performed at the International AIDS Conference in Washington, DC.7 She kept touring. She kept writing. She died in 2019.
Four years later, a group of Lifetime Survivors took her poem and did what she had been asking the world to do the whole time: they called themselves what they were.
The 2023 declaration — USCHA plenary
In September 2023, at the U.S. Conference on HIV/AIDS (USCHA) in Washington, DC, about fifteen Lifetime Survivors took the plenary stage together. A video of Mary Bowman performing "Dandelions" played first. Then, one by one, the survivors on stage read a declaration written by and for the community. The declaration is now the founding document of what is called the Dandelions Movement.1
The declaration did three things. First, it gave the community a name of its own making. Second, it named the terms the community was rejecting. Third, it made a set of demands: on funders, on researchers, on service providers, on the media, and on the rest of the HIV community.
What the declaration asks for
- Call us what we call ourselves. Lifetime Survivors. Dandelions. Not "perinatals," "verticals," or "children born with HIV" — especially when we are adults.
- Fund research that reflects our reality. Aging with lifelong HIV, mental-health support, transition from pediatric to adult care, reproductive planning.
- Support peer-led leadership. Dandelions leading Dandelions. Not people speaking for us.
- Recognize the intersections. A Black Dandelion woman in the South is navigating racism, sexism, HIV stigma, and inherited grief simultaneously. So is a Latino Dandelion in New York. So is a Dandelion whose parents both died.
Mary Bowman — a longer look
Mary E. Bowman
Poet, singer, songwriter, HIV advocate, Lifetime Survivor. Born with HIV in 1989. Mother died of AIDS-related complications when Mary was three. Died 2019. Her spoken-word piece "Dandelions" is the source of the community's chosen name.
Bowman started performing at SpitDat, an open-mic night in DC, when she was twenty. Her first poem in public was "Dandelions" — a piece she wrote for her mother, and for herself, and for everyone else living with the virus. She was raised by her biological father after her mother's death; her father was not her mother's partner. Bowman spoke openly, in interviews and on stage, about how many years it took her to say her status out loud.7
She published LOTUS, a poetry collection, in 2011, and it was named Book of the Year at the National Underground Spoken Word Poetry Awards. She performed at the 2012 International AIDS Conference in DC. She was widely compared, by writers who had heard her live, to Maya Angelou — not for imitation, but for a quality of moral authority in the voice.8
Mary Bowman's video of "Dandelions" is what USCHA plenary played in 2023 to open the community's declaration. Watching it is the closest anyone can now come to the founding moment of a movement she did not live to see named after her.
The Dandelions Movement
The Dandelions Movement is a peer-led, "for us, by us" network of Lifetime Survivors, founded by Antoinette Jones and Derinthia Williams and formally announced at USCHA 2023.9 Its mission, in the founders' words, is "to free our community from isolation, stigma, violence, and discrimination" and to identify the estimated 7,000 to 13,000 Dandelions in the United States (and, eventually, worldwide) so they can find one another.9
Antoinette Jones
"Dandelion woman living with HIV." Born with HIV; adopted as an infant. Grew up in a serodiscordant family. Began HIV advocacy in 2018 as a peer navigator. Co-founder and co-Executive Director of Dandelions, Inc. Based in Atlanta.
Jones's advocacy work started with her own experience of isolation. She has said in profiles that she often felt alone as a child, without much social support, until she was eighteen. She now leads a national network built to prevent other Dandelions from having to figure it out alone the way she did.10
Derinthia Williams
Lifetime Survivor. Co-founder of the Dandelions Movement, alongside Antoinette Jones, at USCHA 2023.
Williams and Jones built the movement together as a peer-organized structure, not a top-down organization. The stated goal is that Dandelions themselves — not clinicians, not researchers, not adjacent advocates — run the organization and speak for it.11
Lifelong HIV — what the science shows
Living with HIV since birth is medically different from acquiring HIV as an adult. The virus has been in the body during every stage of immune development, physical growth, and brain maturation. Antiretroviral therapy that suppresses viral replication does not undo that history. As a result, Dandelions have become a distinct clinical population in HIV medicine, and researchers around the world are now describing what aging with lifelong HIV actually looks like.12
What the research finds
- Comorbidities show up earlier. A 2025 review in Current Opinion in HIV and AIDS found that adults with perinatally acquired HIV develop metabolic, cardiovascular, respiratory, bone, and renal conditions at younger chronological ages than adults who acquired HIV later in life — even when their viral load is fully suppressed on treatment.12
- Neurocognitive and mental-health concerns. The same review reports structural brain changes and impaired cognitive function, and an early case-series signal of a six-fold higher prevalence of psychosis among adults with lifelong HIV compared with age-matched peers. Depression and anxiety rates are also elevated.12
- Bereavement is a health issue. Many Dandelions lost a parent, sometimes both parents, to AIDS-related illness when they were young. The clinical literature increasingly names inherited grief as one of the strongest determinants of long-term wellbeing in this population.12
- Mortality is highest for Black young adults. A 2025 analysis in Open Forum Infectious Diseases of the U.S. Pediatric HIV/AIDS Cohort Study followed 617 young adults with perinatal HIV and found mortality was concentrated in the 30-and-older age band, and that Black young adults with perinatal HIV had mortality rates at least 7.1 times higher than same-age white non-Hispanic peers in the general U.S. population.13
- Transition to adult HIV care is a chokepoint. Moving from pediatric HIV clinics (where a Dandelion may have known a single provider since infancy) to adult HIV care is one of the most vulnerable periods in the lifespan — associated with treatment interruption, viral rebound, and drop-out from care. The New York State Department of Health AIDS Institute guideline explicitly recommends structured transition support for young adults with perinatal HIV.14
Undetectable = Untransmittable applies here too. A Dandelion on effective HIV treatment with a sustained undetectable viral load cannot sexually transmit HIV to a partner. The U=U science is the same whether HIV was acquired at birth, in adolescence, or in adulthood. See our U=U article for the primary sources.
Language that works
The Dandelions Movement has been specific about what to say and what not to say. This is not about politeness. It is about identity, about clinical accuracy, and about a community's right to name itself. Here is the working guidance.
Prefer
- Lifetime Survivor — the plain-English identity term the community chose for itself.
- Dandelion — the community's poetic self-name, in honor of Mary Bowman.
- Person living with HIV since birth — acceptable when a clinical or descriptive frame is needed.
- Perinatally acquired HIV or PHIV — acceptable as a clinical term describing how HIV was transmitted, when you are writing about transmission, not identity.
Avoid
- Perinatal / perinatally infected as an identity noun. It labels a person by the mechanism of their transmission.
- Vertical transmission case as a way to refer to a person. Explicitly rejected in the community's own declaration.
- Person born with HIV as an external label. Some Lifetime Survivors self-describe this way, but the community has asked that outsiders not lead with this phrasing.
- HIV-positive child to describe an adult. Dandelions are grown people.
- Innocent victim — the framing that treats Dandelions as morally "clean" HIV in contrast to a supposedly "guilty" adult HIV. This framing hurts everyone.
If you are an ally or a provider
- Follow Dandelion leaders. Follow @dandelions_movement. Read work by Antoinette Jones. Show up when they speak. Do not build a program "about" Dandelions without Dandelions in leadership.
- Update your language and your intake forms. Replace "perinatally infected" with "lifelong HIV" or "perinatally acquired" in describing transmission, and use "Lifetime Survivor" as an identity option where identity is asked.
- Ask your funder about lifespan care. Ryan White Part D funds pediatric and family HIV care. Most Dandelions are now adults. Ask what has replaced Part D for the community that aged out of it.
- Support mental-health infrastructure. Bereavement-informed, culturally responsive mental-health care is not optional for this population.
- Do not tell a Dandelion how brave they are and leave. Ask what they need. Then help supply it.
Florida context
Florida remains one of the top states in the country for both adult and pediatric HIV diagnoses. From 1985 through the mid-1990s, Florida had one of the highest per-capita rates of perinatal HIV transmission in the U.S., driven by the interaction of an unusually high adult HIV prevalence, Ryan White's home state politics around AIDS in schools, and healthcare access barriers for women of color. Many Dandelions who grew up in Miami-Dade, Broward, Palm Beach, Duval, and Hillsborough counties are now in their thirties and forties. Florida's Ryan White Part D program historically served children and families with HIV; adults who aged out of it are now navigating adult Ryan White services (Parts A, B, and C) and Medicaid HIV coverage under Florida's ADAP program.
If you are a Florida-based Lifetime Survivor and looking for peer connection, the Dandelions Movement is national and welcomes members from every state. Florida-based Ryan White services, ADAP enrollment, and Florida-specific HIV care resources are indexed on our Find Care and Florida HIV pages.
Questions people ask
Aren't all people with HIV survivors?
Yes. Everyone living with HIV is surviving HIV. But the HIV community has for decades used specific terms to describe subgroups whose experience of the virus is meaningfully different. Long-term survivor commonly means someone who was diagnosed before effective treatment existed (before 1996), or who has lived with HIV for more than a decade. Lifetime survivor means someone who has lived with HIV since birth or infancy. They are related but not identical categories.
Are all Dandelions Black or brown?
No. Dandelions are of every race and ethnicity. But because HIV in women in the United States has always disproportionately affected Black and Latina women, and because HIV in women is the route to perinatal transmission, the Dandelion population is disproportionately Black and Latino. This is a fact about racism and access to healthcare, not a fact about biology.
Are Dandelions only gay men?
No. This is the central point the community has been making. Dandelions are straight women, straight men, gay men, gay women, bisexual people, and trans people. The community has explicitly said: our identity is that we have lived with HIV since birth. Not who we love. Not our gender.
Can Dandelions have HIV-negative children?
Yes. A Dandelion who is on effective HIV treatment with a suppressed viral load can conceive, carry, and deliver an HIV-negative baby. The full standard of care for pregnancy with HIV — ART throughout pregnancy, careful monitoring, and infant prophylaxis — drops the perinatal transmission rate below 1% and, when done well, close to 0. Modern U.S. data show 42 U.S. babies were born with HIV in 2022 out of roughly 3.7 million births, and a rising share of Dandelions are choosing to become parents.4
Where can I read Mary Bowman's poem?
Full text and video excerpts are archived through the AIDS35 project, and biographical coverage of her performance history and its role in the movement is at POZ and Mark S. King's My Fabulous Disease. Her collection LOTUS (2011) collects her early poetry.
Is there a difference between "Lifetime Survivor" and "Long-Term Survivor"?
Yes, and the community is careful about it. Long-Term Survivors are the ~300,000 people who have been living with HIV for a decade or more — especially those diagnosed before effective treatment was available. Lifetime Survivors, or Dandelions, are a subset who acquired HIV at birth or in infancy. Many Long-Term Survivors are veterans of the plague years. Many Dandelions grew up watching their parents live, and often die, with the plague.
References & Sources
Primary and community sources. NIH, CDC, and peer-reviewed clinical literature for the medicine; The Well Project, POZ, TheBody, and Georgetown O'Neill Institute for the community language and history; the Dandelions Movement itself for the movement's founding record.
- The Well Project. Lifetime Survivors of HIV. The primary community source for the USCHA 2023 declaration and preferred terminology. thewellproject.org — Lifetime Survivors of HIV ↵ ↵
- POZ Magazine. We Are Lifetime Survivors: A community of people who acquired HIV at birth or early in life declare their own name. poz.com — We Are Lifetime Survivors ↵ ↵
- TheBody. Lifetime Survivors Are Still Here...and We're Organizing. Reports the USCHA 2023 plenary and the CDC-derived estimate of about 12,628 people living with perinatally acquired HIV in the U.S. and dependent areas. thebody.com — Lifetime Survivors organizing ↵
- O'Neill Institute for National and Global Health Law, Georgetown University Law Center. HIV at Birth: How the U.S. Can End Perinatal HIV Transmission. Policy brief; includes the community-endorsed definition of Lifetime Survivors and Dandelions, and 2022 U.S. perinatal transmission data. Georgetown O'Neill Institute — HIV at Birth policy brief (PDF) ↵ ↵ ↵ ↵
- National Institutes of Health, HIVinfo. HIV and Children. "People who acquired HIV at birth or shortly after are referred to as lifetime survivors or Dandelions." hivinfo.nih.gov — HIV and Children ↵
- Centers for Disease Control and Prevention. Diagnoses, deaths, and prevalence of HIV in the United States and dependent areas, 2022. HIV Surveillance Supplemental Report. cdc.gov — HIV Surveillance Reports ↵
- POZ Magazine. Based on Her True Story: Mary Bowman. Biographical feature on Mary Bowman, including LOTUS, her SpitDat performance history, and the 2012 International AIDS Conference performance. poz.com — Mary Bowman profile ↵ ↵ ↵
- Mark S. King. The Disguised Blessings of HIV+ Poet Mary Bowman, My Fabulous Disease. Long-form profile of Bowman's advocacy, first "Dandelions" performance at SpitDat, and family biography. marksking.com — Mary Bowman feature ↵
- The Well Project. Collected Resources by and for Black Women Living with HIV — Dandelions Movement. Founders: Antoinette Jones and Derinthia Williams. Movement's mission statement. thewellproject.org — Dandelions Movement entry ↵ ↵
- The Well Project. Antoinette Jones — team profile. "Dandelion Woman Living with HIV," co-founder and co-Executive Director of Dandelions, Inc. thewellproject.org — Antoinette Jones profile ↵
- AIDS United. What We Can Accomplish: An Interview with Lifetime Survivors. First-person account of the USCHA 2023 declaration and the movement's founding. aidsunited.org — interview with Lifetime Survivors ↵
- Foster, C., et al. Aging of adult lifetime survivors with perinatally acquired HIV. Current Opinion in HIV and AIDS, 2025. PMC12147760. Peer-reviewed review of comorbidity patterns, neurocognitive findings, mental-health prevalence, and inherited-grief effects in adults with perinatal HIV. PMC — Aging of adult lifetime survivors with perinatal HIV ↵ ↵ ↵ ↵
- Van Dyke, R. B., et al. Long-term outcomes of young adults with perinatal HIV infection in the United States. Open Forum Infectious Diseases, 2025. Cohort analysis of 617 young adults with perinatal HIV; documents mortality patterns, including race-based disparities. Open Forum Infectious Diseases — young adults with perinatal HIV ↵
- New York State Department of Health AIDS Institute Clinical Guidelines Program. Addressing the Needs of Older Patients and Long-Term Survivors in HIV Care. Includes definitions of Long-Term Survivor and Lifetime Survivor, and transition-of-care guidance. hivguidelines.org — older patients and long-term survivors ↵
- National Institutes of Health, Office of AIDS Research. HIV and Aging. Official NIH guidance on HIV and aging, including definitions of long-term and lifetime survivors. oar.nih.gov — HIV and Aging