She walks into Boro Bean, a small coffeehouse in Hopewell, N.J., and you can’t decide if she’s a ray of sunshine or a beam of moonlight. She shimmers. She has long blonde hair and wears brown, high-heeled boots. Tall and model-thin, she is elegant even in torn jeans – and suddenly it seems like everyone who’s staring at her wide smile and blue eyes feels better. She is so alive.
This is Regan Hofmann, who has been living with HIV for 14 years.
Hofmann grew up in Princeton, N.J., and graduated from the private, co-ed Princeton Day School and Trinity College in Hartford, CT. Soon after, she married and moved to Atlanta, GA, with her husband, where she was hoping to find a writing job. Then the marriage failed.
After her divorce at 28, Hofmann started dating a man.
“I had sex without a condom twice,” she says.
She never imagined her boyfriend was HIV positive.
“He seemed so clean and safe. He had a nice family. He sang to me and let me drive the boat, with his arms wrapped protectively around my shoulders, when we went waterskiing,” she said.
He was the kind of man she’d bring home to her family. She didn’t know that he had a sore on his leg that would not heal. He did not know the implications of his sore.
But Hofmann knew that shortly after unprotected sex – when she and her boyfriend were in the process of breaking up – she had a swollen lymph node in her upper leg. She went to the doctor, who gave her an HIV test.
He gave her the results with these words: “I don’t know how to tell you this, so I am just going to tell you. Your blood work shows that you are HIV-positive. I am so sorry.”
Back then, Hofmann considered HIV a death sentence. But instead of “planning for my impending death and a graceful demise with a service of song, dance, drink, and celebration,” she is now “completely and thankfully healthy.”
She estimates that she has consumed over 48,000 pills over the past 14 years – mostly protease-inhibitors, which have kept the virus at bay. Today, her regime is down to three pills a day.
She has never had a negative reaction to the drugs or suffered ill effects from HIV. She sums up her good health by saying, quite calmly, “You can have a normal life with HIV.”
Her ex-boyfriend died five years ago from complications of AIDS. Hofmann says he didn’t know he had the virus or that he was passing it along to her. She says he was not “a gift-giver” – a person who knowingly and intentionally passes along HIV.
Hofmann tells her story in an exceptionally well-written book, I Have Something to Tell You. It reads like a novel and is selling well. (”Even my plumber has read it,” she confides.)
She says that writing the book – and more importantly, telling the truth about life with HIV – was “a new beginning.” It led her to become an activist and gave her life a mission: “to tell everyone in the world willing to listen how to prevent getting HIV, how to get tested, how to get proper treatment in order to live, and how to change the insulting stigma so often associated with the disease.”
Hofmann fulfills her mission in several ways: She is editor-in-chief of POZ, a national magazine for people living with HIV and AIDS. And she recently joined the board of directors of AmfAR, The Foundation for AIDS research, by far the most important organization of its kind in the U.S.
Despite years of hard work, Hofmann worries she’s not doing enough. She’s deeply concerned about the current state of the pandemic.
“The world and America are suffering from ‘AIDS apathy,’ ” she says.
The numbers she reels off are proof that there is no reason for complacency: Every nine seconds, someone in the world is diagnosed with HIV; 33.4 million people are estimated to be living with the virus, and 25 million have died from AIDS to date. The numbers, she says, “make the HIV/AIDS pandemic far and away the worst medical catastrophe to have visited humankind since the Black Death struck Europe in the 14th century.”
Hofmann is concerned about the disease’s effect on women, particularly African-American women. AIDS is the number-one killer of women between the ages of 15 and 44 worldwide; in the U.S., 27 percent of people infected with HIV are female and disproportionately African-American (although the good news is that African-American men are more likely to get tested than other racial and ethnic groups).
“Women are not in a position of power when it comes to sex,” says Hofmann, when asked about the discrepancy in numbers. She talks of women she has seen in her travels who are caught up in the sex trade.
“They have sex to make money to buy food to feed their children. They make more money if they have sex without a condom – almost five times more than if they have sex with a man who uses one,” she says.
She sees the development and use of microbicides as one of the most promising preventive interventions to emerge over the past decade. She says they are an effective weapon against HIV/AIDS for young girls forced into early marriage in sub-Sahara Africa and other parts of the developing world. These young women are often infected by their older husbands, who have had unprotected sex with HIV-positive prostitutes.
Hofmann’s activist work has taken her as far away as Vietnam and as near as Greenwich, CT. She remembers a visit to a Greenwich middle school, when a supervisor warned her not to answer any questions about sex, and a 12-year-old male student asked her if it was safe to keep a condom in his wallet. Hoffman plowed ahead and answered him: “Just make sure that you check the expiration date on the condom and don’t use it if it has expired.” The student shot back: “Oh, I’ll get to it long before it expires.”
Hofmann is frustrated with Americans’ views about sexuality education. She quotes her mother: “Condoms are like Band-Aids and gardening gloves: they’re just a protective device.” She wishes that every parent and teacher would use this wise analogy.
She has wonderful ideas for HIV/AIDS prevention. She’d like to see HIV-prevention ads run during halftime of the 2011 Super Bowl.
“Why can’t we discuss how football and the leadership idolatry it creates be leveraged to help educate American youth about sexual health?” she asks. “Give us one cool player from each team mentioning the use of ‘safe sex,’ and maybe a cheerleader or two, and that should get the nation’s attention!”
She favors teaching young people decision-making skills in sex ed, so that in the heat of the moment, they will have the skills they need to discuss using condoms or not having sex.
“Courses have to be much more explicit than most presently are, and young people need to practice putting condoms over rubber penises in the classroom. They also need to learn to put them on in the dark,” says Hofmann.
“Sex isn’t just kissing or intercourse; it’s everything in between,” she adds.
For Regan Hofmann – whose story has given her a global vision and global work – preventing HIV is about self-esteem, human rights, and personal dignity. She will spend her life doing everything in her power to removing its stigma and stop the virus from infecting more women and men.
That is what Hofmann has to tell us.
Will we listen?