Since the advent of AIDS in Africa and the U.S., millions have been infected by HIV and have died. After 33 years, no vaccine or cure exists although progress is reported. Currently, sexually active teens are at greatest risk when they choose unwisely to have unprotected sexual intercourse. I first met youth living with AIDS in the 1980s and their hopeless situation struck my conscience. After much thought, I left behind my home, family and successful art publishing business and gallery to embark on a humanitarian mission to save young lives. Thus began a historic movement — the first Global AIDS Walks by a trained expert to educate vulnerable teens, sharing best practices between cultures and regions, genders and religions.
My goal has always been to empower a growing worldwide cadre of volunteer PeerCorps (pronounced peer-core) to spread the life-saving message to their young friends and neighbors. Because traditional Before AIDS, I led a comfortable life in a family of six. Born and raised in Fitchburg, Massachusetts, an industrial city amidst rolling hills covered with the real Johnny Appleseed’s apple orchards and frisky rivers, I went to community schools (literally, “Community School,” then Edgerly Grade School and Applewild School). I loved my hometown but was thrilled to attend Deerfield Academy, a well-known prep school. Accepted to go to Austria as an exchange student, I lived in a remote mountain village, my first cross-cultural experience.
I graduated from Dartmouth College with a degree in history and government. While a senior, I served as the youngest elected official in the U.S. (City Council in Fitchburg, 1969). In those days the voting age was 21 and that my first vote was for myself. Since my early years, I understood that public service could improve the lives of regular people and I was actively involved in community service and advocacy. Purposeful volunteerism was an important ideal after President John F. Kennedy’s stirring Inauguration call: “Ask not what your country can do for you–ask what you can do for your country.” My parents had instilled in me a heritage of helping others and I willingly took leadership roles. My first job was running a community center “Friendship Village” for disadvantaged children. Later I taught incarcerated teens in lock up, many serving time for violent acts, because I believed every adolescent deserved a second chance at a reformed life (although not everyone succeeded).
I have always been a risk-taker with wanderlust. Following an intuition that I was to experience an once-in-a-lifetime adventure, I left the U.S. in 1975 to travel half way around the world by tramp steamer to find a beautiful remote atoll in the South Pacific. While there I lived among indigenous islanders as the sole outsider. Living the life of a modern day Robinson Crusoe, the South Seas environment was idyllic. I contributed by offering my services as a teacher in a thatched hut school where I met Tangisia, my first real love (see Paradise Papers). However, not all experiences were pleasurable as I was confronted by serious medical emergencies without the know-how or adequate modern drugs to help save the islanders lives. I vowed to someday do more. After two years, I returned to America, a better, more culturally respectful person than before.
Within two short months, I entered MIT in their Masters of Science program, a step that I had not planned but literally opened up for me. What a culture shock–from semi stone-age technology on a remote atoll to the epitome of everything technological. I taught an experimental film course at MIT as a grad student where a group of camera people “attacked” a story. Upon graduation, I worked at Raytheon doing innovative videodisc trainings (new at the time) for air force personnel working with missile systems and dismantling warheads. Pursuing my interest in the technical aspects of visual education, I entered the Doctoral program at Harvard to study under one of the originators of “Sesame Street.” While there I was President of its student government and I met AIDS pioneer Dr. Jonathan Mann who introduced me to the human rights issues of HIV/AIDS; a seminal moment in my story–although I did not know it at the time.
Unfortunately, I was overwhelmed by student loans. Out of my Cambridge apartment, I began a start-up company to pay my bills using the name Paté Poste Adcards. Using a mailing list of New England artists, I found a prestigious niche — publishing high quality advertising postcards on recycled stock, a first in the emerging green culture of the times. The company took off and I moved it to a good location on Boston’s historic Beacon Hill and opened a contemporary art gallery. Within a few short years, the firm was producing sophisticated advertising materials for leading businesses and galleries and was soon #1 in sales in Boston and later #2 in New York. Life was grand. I was making money and enjoying my success.
When AIDS first hit the headlines in the early 1980s it shocked the world. A mysterious virus was spreading and killing people in a matter of months. No one, not even leading scientists, understood precisely how it was being transmitted. I saw it ravage the arts community and many of my clients. When I received a call from friends of an up and coming young artist canceling the art opening, it was clear that young people whom I interacted with were dying and there was virtually no medicine to help. It was a death sentence without reprieve. Then my junior business partner told me one day he had tested positive for AIDS. He cried his heart out — yet I was too immobilized by fear to get out of my chair and give him a hug. To this day, I am haunted by my cowardly inaction but that’s how scared we all were. I then discovered one of my former juveniles in lock up had died of AIDS at 18 and I was heartbroken when I met his HIV-positive partner at the funeral, a girl of 17 and pregnant. I was not sure what I could do but my passion for community service and personal interaction with these friends made me understand I had to take a leadership role in this fight.
It was Marlena, a wonderful young African-American friend who challenged me in a profound way that changed the course of my life and later provided the impetus for my encore act as a maturing human. Previously we had worked together at the youth detention center and shared a desire to help teens at risk. When I called to wish her a Happy New Year, I could barely hear her speak. She insisted that she was “busy” and did not want me to visit but I did nevertheless. I found her apartment door open in January’s cold. When I knocked on her bedroom door, it swung open and instead of seeing a robust individual with a cheery disposition, I found an emaciated old woman (or so she appeared) lying in an unkempt bed in her bodily fluids. She pulled the sheet up over her head and said, “Please go away Johnny.” That’s how I discovered she had AIDS. Not willing to return to the hospital or go to an AIDS hospice, Marlena was waiting to die alone in an unheated and empty apartment. Neighborhood drug dealers had ripped off her possessions because she was too weak to secure the broken door. Her own family would not visit. Her church sent a “get well” card. I called mutual friends and together we organized daily visits to bathe her, cook meals and offer comfort. A week before she died, she took my hand in her bony one and beseeched me to use my talents to organize a viable campaign to stop more young people from dying. That was when I seriously thought about changing my doctoral focus at Harvard to saving teens from AIDS.
I spoke to my professors and explained my new course direction. Within a year, I sold my publishing business to return to Harvard full-time to develop the most efficacious HIV prevention programs targeting young people. Dr. Mann continued to be a mentor. I kept my art gallery to maintain a modest income as my student loans were now larger than ever. My 500 page doctoral thesis, Adolescents and AIDS: The Third Wave (Harvard, 1994) predicted the emerging global youth pandemic and offered a blueprint on how to set up a peer-led program at the grassroots level – the key being one that could be replicated easily in any community, no matter how poor or isolated. I spoke at international conferences and found receptive audiences that were surprised to hear that heterosexual youth could be at risk.
I began the first website for teens on AIDS prevention in 1994 using the emerging technology and well-versed MIT friends, to inform the youth in the global community. I used TeenAIDS-PeerCorps as the vehicle (in 1997 it became a 501 c 3 non-profit) to raise funds to finance my ambitious goals. I was honored when Dr. Mann recommended me for an assignment in Vietnam setting up a new youth HIV program for Ho Chi Minh City’s AIDS Department when the nation was emerging from its most communist period of isolation and HIV was on the rise. Later he asked me to be a co-lecturer in two of his seminars on AIDS at the Harvard School of Public Health’s Francois Bagnoud Center. One day while teaching, it dawned on me that I was preaching to the choir. Soon thereafter, I made a bold decision. At my 50th birthday party, curious friends gathered for a “surprise” that I billed as the “Journey of a Lifetime” announcement. They were bewildered to find boxes packed and the gallery art was taken down. I told them I was leaving Boston behind for a long time and undertaking an international mission to train young people to become peer teachers in their local communities: the Global AIDS Walk of Dr. John was beginning, the first and only one in the history of the pandemic.
I raised barely enough funds to start the first leg of my trek. I bought a round the world ticket and communicated with international colleagues that I was coming to their countries and needed their assistance. I emailed youth that had written to me for advice on the website to expect Dr. John in their countries. It was a major undertaking on a shoestring budget. Local TV stations carried the news of this quixotic humanitarian mission and was then picked up by national outlets, the BBC and Reuters. My mid-life career change captured the attention of many at a critical time when publicity was needed to tell the little-heard story that youth were dying of AIDS.
I have now visited 86 countries in 15 years. In some countries like Brazil, South Africa, India, Kenya, Vietnam, Mexico and Cambodia, I stayed for long periods; in others, for less than a month. Often I stepped off the plane or a bus not knowing what young person I would encounter that would join my volunteer campaign. For many, I am the first American with whom they have personally and professionally interacted. When I explain that I am not being paid to come to their country to fight AIDS, they are very surprised. And when I ask them to volunteer in my educational-medical mission, most are enthusiastic to follow my lead as teachers, translators and guides (I cover their meals and transportation). I emphasize they have the power to save their best friends’ lives. Their youthful altruism and idealism make them proud and eager to assist the cause that can help save their young countrymen and women.
Many times I ran out of money and had to hit the phones and get on the internet at cyber cafes to beg and borrow for emergency funds (frankly I still have to do it today, one of the most difficult and personally draining tasks needed to stay afloat). Families would take me in when I had no lodging. Many offered meals and rides. Street outreach is exciting but not always easy. I was arrested in Cuba for AIDS proselytizing and incredibly charged with sabotage of the state economy (my extensive video recordings exonerated me but not after my helper was beaten). My team and I were harassed by security police in Belarus for unsanctioned public meetings; my materials were confiscated in China; I was robbed during a hit and run in Panama; armed fighting got very close to us in the Congo DR; and thugs forcibly kicked us out of teen brothels in Cambodia when we warned the girls about AIDS and using condoms (corrupt police often shot young girls that refused to work without protection). Sex trafficking in the developed and developing worlds is a leading cause of teen HIV/AIDS. Many of these experiences have been captured on video because I sincerely believe, since my MIT days, that a visual record tells a true story with transparency and empathy.
As a short, plump fellow (okay, fat), I discovered that my travels would be physically challenging in ways I did not fully anticipate. Before the first leg of my Walk began (six weeks before I left for Vietnam), I was diagnosed with heart disease and underwent a quadruple bypass at a time when breaking the breastbone was the way to get to the heart. It never healed properly resulting in a ventral hernia that protrudes and inhibits lengthy exertion. I use a CPAP machine at night for sleep apnea and that is not always possible in villages where there is no electricity and prevents any real sleep. I have also lived three decades with Type 2 diabetes and very often am in locations where there is no refrigeration for my insulin. Diabetic neuropathy has affected my walking and I have fallen and broken a variety of bones necessitating an implanted steel rod in my right arm. A severe leg wound that is not healing is on my mind now as I write this (I don’t have health insurance). Yet, most people would say that I am a happy-go-lucky guy and for the most part, that is true. I am not a whiner about my health and accept things as is (driving dear friends crazy). My colorful Hawaiian shirts are often the first thing that young people see. My smile invites friendly banter. Discovering a new crowd of youth propels me to go the extra mile. And without a doubt that is the true purpose for my volunteer work.
The facts about teen HIV transmission are disturbing and incontrovertible. Youth between 13 and 22 make up 25% of new HIV/AIDS cases in the U.S. (CDC). Globally it is worse: at least 40% of new cases occur among 13-24 year olds (UNAIDS). The problem is real but many adults, loving parents included, do not want to believe that their teen children are having sex and are at risk. Too many cultures and religious entities turn a blind eye because public acknowledgement of HIV/AIDS’ sexual transmission routes offends their moral sensibilities. I passionately believe that the world must open its eyes to the crisis and I have designed very low cost programs that any nation and community can afford to undertake. I am guided by TeenAIDS’ mission statement that begins, “It is the human right of all maturing adolescents to have full and honest access to the medically accurate facts…”
A spreading teen epidemic will be devastating to all youth, their families and the human race. From years of firsthand experience I know the adage to be true: an ounce of prevention is worth a pound of cure (in lieu of a real one that might or might not be years away). However, I have witnessed how traditional programs are not working as effectively as they did when AIDS was a hot topic in the public eye until the millennium. Yet this crisis still threatens millions of young lives and could potentially bankrupt already over-loaded health systems if newly infected youth must survive on expensive medicines for the rest of their lives. Schools no longer teach AIDS prevention as proactively as they did in the first decades even though studies show sexual activity is beginning now at younger ages and much of it is unprotected. With all the evidence that condoms can prevent many HIV transmissions, it is imperative to find convincing arguments why teens need to rely on them. My approach has been to look for novel ways of initiating better programs using new tactics and methodologies.
Before my Harvard research offered a prototype for inexpensive grassroots action, many governments and schools tended to believe that only large and costly programs could properly address a crisis of the magnitude presented by AIDS. Professional bureaucracies wanted standardized programs using traditional, albeit outdated methods to lecture teens how to behave properly like responsible adults do. However, from thousands of surveys and interviews I have conducted, I knew that the old ways of teaching young people were not working because discussing intimate details of sex is a highly personal subject for all adolescents. Youth must play a major role in the construction and dissemination of the message and that only occurs if they are empowered to be significant players in the effort. Volunteer messengers are more convincing to their peers than paid peer workers — and the cost savings are immense. My Global AIDS Walk was the first of its kind, establishing a model that other youth organizations have since imitated. I set up the first teen AIDS website and Advice columns on the internet when it was still new. We held the first global webcasts via satellite uplink for youth on World AIDS Day from Africa.
However, my most innovative action was the introduction of “AIDS Attacks” to grab teens’ attention. The method is a proven combination of direct street outreach and personalized contact where we approach strangers and say, “We have information that will save your best friend’s life. Do you want to hear it?” This psychological hook works with even the most skeptical teens. My purpose of our sudden appearance is to engage them quickly and present a compelling reason how they and their circle will benefit from the news. We promote entertainment events with live music and free testing like a Sports Day, Mega Beach Party, a Hop Off and 5K Run to Stop AIDS.
My newest innovation has the potential to be a major game changer in AIDS prevention. It is also the most controversial. Beginning in 2012 when the FDA approved the OTC (over the counter) sale of HIV home test kits to anyone 17 and older, in drugstores nationwide without a doctor’s prescription, I understood that the longstanding stigma of AIDS testing could be finally brought to an end. Thus began the first live testing of HIV in the United States in late 2012 when I went alone to public venues where teens liked to gather in groups. Being unique, it was a pilot program that had its ups and downs. I began in my new hometown of Norfolk, Virginia. One of the reasons that I chose to move TeenAIDS to this city of 250,000 is because it has the highest rates of AIDS in the state and among the highest STI cases per capita in the country. Coincidentally, Norfolk is home to the largest naval operations in the world that constantly sees young people coming and going and traveling globally. I like the place because in many ways it reminds me of a mega version of my hometown in Massachusetts with all its urban qualities but near beaches. I found that traditional HIV prevention efforts, many funded by taxpayers on both the federal and state levels, were not working effectively. I knew a more proactive prevention campaign was urgently needed to reach vulnerable youth before a horrific decision was irreversibly made, often out of ignorance of the facts. The oral swab saliva tests are easy, quick (20 minutes), peer-friendly, and while expensive at $39 each, is much less costly than what is offered in formalized testing centers with large physical operations, major overhead expenses and numerous paid staff.
On April 6, 2013 the first TA-PC team of seven youth accompanied me to make an AIDS Attack at a skateboard park. The first teen I asked to take a free test said yes, surprising his astonished girlfriend and best buddy. He explained that his uncle had died of AIDS and his family strongly fought against the prejudice he had endured in the early years of the epidemic when the stigma was debilitating. Although he was only 16, he got his mother on the phone to give her permission. Presently I am lobbying the FDA and Congress to allow voluntary testing of 15 year-old youth and up following the recent decision to lower the Plan B Morning After Pill to that age. If a sexually active teen wants to buy a test kit, it should be a personal decision, not to be left to politicians.
However, the next day was historic. On April 7 we conducted the first “live” HIV testing in front of large crowds in Virginia Beach, the state’s largest city, while TV news recorded the dramatic moment. Two young people aged 18 (a female high school senior) and a 20 year-old Navy recruit volunteered to take the public tests in front of hundreds of curious bystanders. When asked why she took the test, the high school girl said, “It’s better to know.” Youth in attendance spread the message using the favorite communication technology of their generation: text messaging, cell phone videos/pictures, Tweets and emails. Carrying the information about HIV testing to a generation at large is a phenomenal use of social media. My research on how live public testing of youth can yield important results was accepted by professional peer review at two international conferences in the summer of 2013.
However, the public testing of youth provoked major controversy with some important city officials in a region that is known for its more genteel, traditional sensibilities. AIDS is not a popular subject among adults that are traditionally centered. Returning to the same park a month later, without the TV cameras and large crowds, we were ordered to shut down operations during the testing of an 18 year old. I said no and the consenting teen agreed. What followed was a front page story in the state’s largest daily metro newspaper and reports on TV. We were threatened with a $10,000 monetary fine and possible arrest. Ultimately the issue went as high as Virginia’s Attorney General’s office that declined to prosecute because it was an issue of free speech and the right of youth to choose when and where to test their own bodies. We have continued testing in many communities and now are leading a national campaign urging other groups to replicate our actions for the health of youth. The impact on TeenAIDS was both negative and positive. It was also a generational divide with most young people expressing thanks for the public information and testing.
In 2013, we established a Guinness Book of World Records’ milestone—the largest mass HIV testing of youth at one time. In Massachusetts, a long row of young volunteers sat on a stage in front of an audience of parents, youth and curious bystanders and took the test. TeenAIDS wants to see this record broken over and over again, in communities everywhere because the end result is that thousands are learning their status in time to avoid transmitting HIV to unsuspecting partners and babies. For those testing positive they are given confirmatory tests and then put immediately on medications that today saves their lives from what was once sure death.
My unique series of Global AIDS Walks and public testing campaign originated from seeing AIDS up close and personal. Because I am a full-time volunteer, my humble sacrifice has convinced many young people to join the campaign — and donors to make donations; unfortunately, not enough. Since the recession of 2008, TA-PC’s income was halved and is only now recovering slowly. For the past two years I was the organization’s main donor (the bulk of my salary from teaching graduate level business management classes on weekends). No taxpayer funds have been used although a few local and national governmental entities have assisted with volunteer manpower, transportation, resources and access to schools. The federal fiscal year for non-profits that ended in June 2013, showed that we generated $450,000 of in-kind donations. My motto is “Ask for everything for free before we pay.” The amazing story of this modest non-profit is the hundreds of hard-working and selfless college interns that are altruistically motivated.
To date, I have walked the streets on all six continents adding new destinations each year. By our record keeping that is supported by an extensive video archive, more than 360,000 youth have been trained as peer teachers, with millions more through social media, the internet, TV, radio and print outlets. Everywhere AIDS colleagues from international organizations get involved; schools and universities invite me to speak; and neighborhoods, rich and poor, welcome the no-cost message that stresses taking personal responsibility for behavioral actions. Importantly, enthusiastic teens take to their social media communications to further spread the news virally and exponentially. While I am an unlikely foot soldier in this international campaign due to my physical limitations, I have boundless energy and the desire to reach all vulnerable young people because I firmly believe that lives are being saved. I also mentor and nurture an incredible group of volunteers of all ages that helps TeenAIDS’ grassroots efforts to reach the world’s youth.
To intellectually support the work, I utilize both quantitative and qualitative methodologies that were originally developed by me at Harvard. Teens are given pre- and post-evaluations that are used to measure the efficacy of our work. I place a heavy reliance on personal interviews and videotaping because overseas travel does not lend itself to extensive record keeping. My research is regularly presented at conferences after professional peer review. Among the recent findings: most students report their schools no longer provide information because AIDS has fallen off their school’s list of priorities. Youths that believe teen HIV is a real and potentially personal threat usually know someone living with it. Some teens report they only use condoms during the first few times with a new partner until they “get to know” them better and trust their lovers and friends with benefits to be monogamous; often an unwise assumption.
For most their biggest worry remains unwanted pregnancy, not AIDS – with the unintended result that HIV can still be unknowingly transmitted despite the mistaken belief that birth control also lowers the risk for STIs. A majority of teens refuse to go to hospitals, clinics and doctor’s offices to get tested by blood and needle because of the lingering stigma of the stereotypes of the first AIDS groups (homosexuals, Africans, drug users and prostitutes, etc.). However, my preliminary research findings from late 2012-2013 strongly suggest that youth like the novelty of live testing among peers. In all the time we have conducted outreach with youth in public venues, we have always been able to test at least one willing youth. It will take more studies and independent review to know the true impact of our public testing campaign.
I am an idealist and an activist. Sustainability is a key factor in our programs. My goal is for a smooth transition over the next three years at the conclusion of my final global walk in 2016 when I will be 68. I am searching for the right team of former and new volunteers that believe in the core mission: that all youth must have full access to all medically accurate knowledge because it is their human right; that the PeerCorps concept that empowers youth makes them the most convincing messengers to their generation; and teens beginning sex have the inviolate right to test their own bodies wherever and whenever they choose without interference by adults. It is possible that a cure for AIDS or a viable HIV vaccine might come into existence during the next few years obviating much of the rational for increased testing, yet the essential concept behind TeenAIDS-PeerCorps was designed to be easily adaptable to any new youth health and human rights crisis requiring service to others by committed volunteers at minimal cost.
TeenAIDS survives off of private, tax-deductible donations and in-kind support from businesses. We do not seek government funding because of onerous strings attached that too often try to control or compromise our message to teens needing honest and open discussion of the sexual and needle transmission of HIV. TA-PC opposes abstinence-only-before-marriage programs based on overly strict religious teachings because they have proven to be ineffective, a waste of limited resources and not realistic. We promote reality-based education that teens accept as believable and reasonable because maturing adolescents cannot always will away their hormonal urges in a world where sex is thrust upon them by the media at every turn. We support the military’s annual testing of its young recruits because they understand the risk of a spreading epidemic and it serves as a guide for all youth. We partner with other organizations by volunteering our services to share TA-PC’s expertise because we are in this together, not for profit or pay. I willingly receive no salary for my AIDS advocacy and never will.
TeenAIDS covers the costs of all the program initiatives including the expenses of the Global Walks. After the financial collapse, our income from donations was greatly reduced. In 2010, I lost my home that also served as our national headquarters because the mortgage could no longer be paid, and then moved our main operations from Massachusetts to Virginia. The office is open six days and on Sunday when it is closed, I have my personal space and time. Willingly I live below the poverty line because I have few personal needs. I lost my health insurance when I moved to Virginia but I pay for insulin and podiatry out of my Social Security payments. Now that I have recently turned 65, I am eligible for Medicare. The non-profit is an all-volunteer organization from the very top to the grassroots with the exception of incidental labor: a paid bookkeeper on a modest hourly basis and the occasional CPA for audits. Almost every service we need (beside utilities, car and gas) is the result of generous in-kind donations by businesses that support our cause.
When I was an idealistic and risk-taking young man, I left the U.S. on a starry-eyed quest of self-discovery. I sold my car and all my worldly possessions except for cameras, some clothes, books, personal items, a tent and sleeping bag. I raised enough cash to pay for a vagabond’s travel into the South Pacific. My initial goal was to find an island of my own where I could attempt to live a solitary existence. After searching out remote locations by tramp steamer and listening to wizened sailors, I found a small, isolated atoll in Micronesia where I lived as the one outsider that admired and recorded their ancient ways. To say that this unique solo experience changed my life is an understatement to the umpteenth degree.
In 2016-2017 I will be fulfilling my 40-year dream to return and set up an intra-islands experimental school to ensure that the traditional customs are preserved (and taught by the elders) while sharing what I have learned from my full range of worldly experiences. The ultimate goal is to place the indigenous young graduates in institutions of higher learning around the Pacific Rim before they return home to affect positive change in their developing countries in a rapidly changing world.
I will not return to my homeland but will always have the highest regard for every blessing it bestowed upon me.
My life is the one I chose.