Built by a person
living with HIV

What this site is

No grants. No pharma money. No committee. No institution. Just one person who has lived every chapter of this, working from a home office with AI as a writing and research engine to do what advocates have always done — at a scale that would have been impossible alone.

The scope, the topic list, the editorial voice, the structure of every hub and every page, the decision to build a 67-county Florida care locator, the choice to write in person-first language, the tone, the sourcing standard — all of it is mine. AI didn't decide what this site should be. I decided. AI helped me build it faster.

I have wanted to build a real website for this community since the day I started the No Shame About Being HIV+ Facebook page in 2013. For more than a decade I did not have the resources or the technical know-how to do it. Facebook was what I had, so Facebook was where the community lived. Everything changed when AI tools matured enough that one person with subject-matter expertise and editorial judgment could actually build at the scale this community deserves. The idea has been sitting with me for 13 years. The tools to execute it only arrived recently.

Think of it the way an electrician who has wired homes for 30 years builds their own house, or a research scientist who has spent a career in the lab builds their own study — they don't stop being an expert because they use power tools or software. The expertise is in the hands, the head, the years of doing the work. The tools just let them build at the scale their expertise deserves. That's what this is: 16 years of lived, volunteer, and professional HIV experience — finally using modern tools to build the resource I wish had existed when I got that phone call in 2010.

It exists because I looked for a resource like this after Florida gutted its AIDS Drug Assistance Program in March 2026^[1] and could not find one. So I built it — a place someone could land at 2am, newly diagnosed or newly without medication, and find what they need without being judged or gatekept.

The diagnosis

I started at American Express Business Travel in 2003. Corporate travel management — not glamorous, not what I thought my life would look like, but steady work that paid the bills. For the next two decades, that career funded everything else I did: tens of thousands of dollars out of my own pocket, every year, for advocacy work that never came with a salary.

On March 3, 2010, I was diagnosed with HIV. I was 32 years old, living in New York City. The only person I had ever known with HIV was Pedro Zamora, from MTV's The Real World: San Francisco — the openly gay, openly HIV-positive cast member who died in 1994, hours after the season finale aired.^[2] I had no roadmap. No community. No language for what I was feeling. Just a diagnosis, and eventually, a small room where I tried to figure out what came next.

I went back to work. And even then, I had the instinct that staying quiet about my status wasn't something I was going to be able to do for long.

The banking crisis reached American Express. There were layoffs, and I was among them. It felt like the floor dropping out — but it opened a door I didn't know was there.

I moved to Washington, D.C. and went to work in HIV advocacy at the height of the ADAP waitlist crisis. By September 2011, more than 9,200 people in twelve states were waiting for HIV medications through the AIDS Drug Assistance Program — the highest waitlist in the program's history.^[3] Florida had thousands of them. I relied on ADAP myself during that period. The crisis was never abstract to me. It was personal.

That year I received the ADAP Champion of the Year award from the ADAP Advocacy Association.^[4] And then something happened I will never forget.

A man walked into a room and told the world his name. Timothy Ray Brown — the Berlin Patient, the first person ever cured of HIV — had chosen late 2010 to reveal his identity publicly, and I was part of the welcoming group when he first shared his story with the U.S. HIV community.^[5] I was in that room. A few weeks later came OraQuick, the first FDA-approved over-the-counter at-home HIV test.^[6] Then Truvada, approved as the first drug for HIV pre-exposure prophylaxis (PrEP).^[7] The entire landscape shifted within weeks. I was two years into my own diagnosis, watching all of it unfold in real time.

When that chapter closed, I went back to American Express.

No Shame & U=U

In 2013, I launched the No Shame About Being HIV+ campaign. I wasn't an established advocate with a polished platform. I was three years into my diagnosis, building something I needed myself. I thought maybe a few dozen people would respond.

Instead, the stories started arriving from around the world. A 17-year-old born with HIV who never gave up. A long-term survivor in Australia speaking publicly after decades of silence. A mother in South Africa whose own mother's words saved her life. They made me cry. They gave me hope.

That same year, my mother passed away. It was one of the darkest periods of my life — and those stories pulled me through.

Around the same time, I was part of a small, tight-knit group — people who messaged daily on Facebook, strategizing about a message that felt almost too good to be true: that a person living with HIV on effective treatment cannot transmit the virus sexually. Before the endorsements, before the global rollout, we were figuring out how to make people believe it.

In 2015, Bruce Richman founded the Prevention Access Campaign; U=U launched publicly in 2016, and New York City's Department of Health became the first public health authority in the world to sign the Consensus Statement.^[8] I used my platform early and consistently to amplify the message. For that work, I was later named a U=U Ambassador for the Prevention Access Campaign.

It wasn't just science. It was liberation.

No Shame grew. U=U went global — endorsed, adopted, expanded. And the entire time, I kept my job at American Express and kept the advocacy work running in parallel. No grants. No salary for any of it. Just whatever the career produced, redirected into work the community needed — for more than a decade, out of my own pocket.

Social platforms changed. The way people engaged changed. As U=U succeeded, the urgency that once powered our daily conversations began to fade. No Shame wound down. The page went quiet. At one point, I deleted it entirely. I brought it back on day 29 — one day before it would have been gone forever. Some part of me wasn't ready to let it go.

The return home

When COVID hit, American Express went through another round of layoffs. During that career break, from February to December 2021, I took a ten-month supervisory role through IQVIA, a healthcare consulting firm contracted by Gilead Sciences. I supervised a patient education line for Biktarvy — consulting people about their medication, advising on community supports, and walking patients through a structured four-week HIV education program. It was real work, doing what I had always done: making HIV information accessible and making sure people knew what help was available to them. When that engagement ended, I eventually went back to American Express, and a couple of years later I stepped away from that career to care for my father. Whether I return to American Express or something adjacent is still an open question — it may well be part of what comes next, because keeping a resource like this alive costs money.

In 2023, I left Florida to move north and care for my father, who had been diagnosed with pulmonary fibrosis — a progressive, incurable lung disease. I wanted to be there. So I went.

Less than a year into that chapter, I needed open heart surgery myself. I was born with a bicuspid aortic valve and had developed an aortic aneurysm. In October 2023, I had a valve-sparing aortic root replacement. I recovered. My father kept fighting.

In April 2025, he passed away.

The build

I moved back to St. Petersburg, Florida in September 2025 — grieving, healing, no clear plan for what came next. I had been off work since June 2025. Twenty-one years of a career behind me, savings running thinner every month, and the passion that had once driven the advocacy work had gone quiet. The light had gone out.

Then Florida cut ADAP.

On March 1, 2026, the Florida Department of Health slashed AIDS Drug Assistance Program eligibility from 400% to 130% of the federal poverty level — roughly $62,600 down to $20,345 in annual income for a household of one. The state also eliminated insurance premium assistance and pulled Biktarvy, the most-prescribed HIV medication in the country, from the formulary. More than 12,000 Floridians — by other estimates, up to 16,000 — lost access to their medications or coverage overnight.^[9]

I had relied on ADAP personally. I knew exactly what losing it meant — not in the abstract, but in the body.

Public pressure moved fast. On March 24, 2026, Governor Ron DeSantis signed emergency legislation restoring 400% FPL eligibility and appropriating $30.9 million in bridge funding through June 30, 2026.^[10] But the restoration was incomplete: premium assistance for insured Floridians was not restored. The state resumed dispensing medications directly, but stopped paying for the insurance that made continuous care possible. As I write this, I am paying $500 a month out of pocket for health insurance that Florida's ADAP program would have covered before the cut. That is the direct, ongoing cost of a policy that is still only half-fixed — paid every month while building the site that is fighting it.

And something in me ignited.

I started looking for a comprehensive, centralized resource — something that pulled together care, policy, and real-world information for people trying to navigate what had just happened to them. It didn't exist. So I built it.

RiseUpToHIV took shape over roughly seven months of tireless work, built independently from a home office in St. Petersburg — while still grieving, still recovering, still pushing through the kind of pain that doesn't show up on a chart. I started with a manually curated Florida care directory, clinic by clinic. What began as a list became Florida's most comprehensive HIV care directory — 1,500+ locations across all 67 counties, covering Ryan White clinics, ADAP enrollment, housing, legal aid, harm reduction, and more.

Alongside the locator, the site grew: treatment and prevention guides, a deep dive learning library, policy resources, community hubs, over a hundred answered FAQ questions, and a platform built to serve people the way I wished something had served me when I got that phone call in 2010.

A note on money. This site is self-funded. Since 2013, I have spent tens of thousands of dollars out of my own pocket on advocacy work that never came with a salary — and that continued straight through the seven months of building RiseUpToHIV, all while paying $500 a month for insurance that ADAP would have covered before the Florida cut. I have been off work since June 2025 and I need a job by January 1, 2027 to keep my bills paid and keep this site alive. Ideally that job is somewhere in the HIV space, but returning to American Express or something adjacent is also on the table. If you want to help this resource keep going, a sponsorship and membership page is coming by the end of 2026.

A few milestones

Disclosures

Pharma consulting: full disclosure

Over the years I have had two pharma-adjacent relationships, both fully disclosed here.

IQVIA / Gilead Sciences (Feb–Dec 2021): A ten-month supervisory role through IQVIA, a healthcare consulting firm contracted by Gilead. I supervised a patient education line focused on Biktarvy — consulting patients about their medication, advising on community support resources, and guiding them through a structured four-week education program.

Janssen Pharmaceuticals: In earlier years of my advocacy I did occasional small consulting engagements with Janssen and attended their HealthEVoices conference multiple times as a patient advocate. That relationship ended years ago and there is nothing current to disclose.

There is no current consulting relationship with any pharmaceutical company. This site is not funded, directed, or editorially influenced by anyone. It reflects my independent judgment, full stop.