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The Answer Blog

Interviews

What Regan Hofmann Can Tell Us about HIV, AIDS … and Life

March 17, 2010

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.”

ReganHofmann_optHer 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?

Author Robie Harris Talks Candidly to Children About Sex

July 8, 2009

If Robie H. Harris looks like a grandma, it’s because she is one. But unlike almost every other grandma in the United States, Harris is an award-winning author of picture books about sex, sexual health, and safety for young children, school age children, preteens, and adolescents.

The books—It’s Not the Stork!: A Book about Girls, Boys, Babies, Bodies, Families and Friends, for ages 4 and up; It’s So Amazing: A Book about Eggs, Sperm, Birth, Babies and Families, for ages 7 and up; and It’s Perfectly Normal: Changing Bodies, Growing Up, Sex & Sexual Health, for ages 10 and up—have sold millions of copies and been translated into numerous languages. It’s Perfectly Normal, at last count, has been translated into 27 languages. They feature the charming illustrations of Michael Emberley.

I happen to think that Harris’s delightful and informative books belong in every elementary and middle school library, public library, and home in America. I once somewhat jokingly suggested that all new parents should be given Harris’s books for free when they leave the hospital with their first baby and told to put them on a shelf and retrieve them when their kids reach certain ages.

I recently interviewed Harris about the new, updated, 15th anniversary edition of It’s Perfectly Normal, which her publisher, Candlewick Press, will release in early September. The edition includes a new chapter on young people’s fascination with and use of the Internet.

Susan N. Wilson: What is the main purpose of your books about sex and sexuality for children and preteens?

Robie Harris: My overall purpose is to give information to help kids stay healthy from their early years through puberty and adolescence. Kids today are swamped by sexual words and images. The media sometimes gives accurate information, but sometimes it gives inaccurate and even dishonest information and that can lead to unhealthy behaviors and risks.

Our kids must have the most up-to-date and accurate information, so they can make healthy decisions, not risky ones. That’s why I consult with many experts in the field of sexuality when I’m updating my books. I have great respect for parents and teachers and hope that the books Michael and I have created can help them to talk with and educate children about sexual matters.

SW: You’ve updated It’s Perfectly Normal for the 21st century as the banner headline on the new edition proclaims. Since you wrote it 15 years ago, the Internet has come of age and kids find it very exciting.  How have you addressed this new technology and what it offers children in the way of information, good and scary, about sex and sexuality?

RH: Children accept the Internet’s presence 100%, but parents need to help their kids navigate and use it in a safe way and let their kids know the risks it can pose. I tell older kids that while the Internet is a great place to look up topics about sexual health and keep in touch with friends through e-mail, instant messaging, or social networking sites, there are still things they need know to ensure that their own personal health and relationships stay safe and healthy.

I tell kids of all ages that what makes good sense is to ask a grown-up you trust to help you to find sites where you can get responsible information. I also tell them that talking with a trusted adult is a great way to get the information they want. We all know that our children live in a world of sexualized images, and they need to be guided through it by trusted adults.

SW: What do you call the chapter on the Internet in the new edition?

RH: With older kids, ages 10 to 14, I acknowledge the Internet with a new chapter called “Helpful, Fun, Creepy, Dangerous.” The purpose of the chapter is to help kids get information while at the same time stay safe. Some of the information they can get on the Internet will be helpful, some will be fun, but some could be creepy, confusing, and make them feel very uncomfortable. I suggest ways for them to find responsible sites that have helpful and age-appropriate information, so they can make good decisions. I also suggest what to do if they end up on a site that makes them feel upset or creepy.

SW: How would you define the word “pornography” and do you use the word in your revised book?

RH: I think the best definition of pornography is, “You know it when you see it.” I think kids know it when they see it, too. They can’t quite explain it, but they know it, and it can make some feel creepy and upset and others feel excited. I define “puberty” and many other terms in the book, but while I talk about pornography, I do not define it, as I could not come up with a definition I felt would make sense for kids.

But having a conversation with kids, when needed, is something that can happen over time and over many days. There is nothing wrong with using the word if a parent needs to talk with their child about it. Parents and kids can even try to define the word together to help them understand the perfectly normal reactions they may have if they do see it.

SW: Do all children have the same reaction to what you call “creepy” sites?

No, I think that while some find these sites by pure accident, some intend to go to them and find them sexually exciting.

SW: What advice would you give to children or students who come across upsetting information online and are frightened by what they’ve seen or “grossed out” by creepy images?

RH: If they have seen upsetting information online or meet someone online they don’t know, like a stranger who tries to meet them in person, my immediate advice is to quit the site and immediately talk to a trusted, responsible older person about what they have just seen. I also hope that the responsible, older person will assure them that they haven’t done anything wrong in finding the site, and that they are just curious. And being curious about sexual matters is not bad; rather, it’s normal and healthy.

SW: There is a lot of talk about the prevalence of cyberbullying. Do you address this issue?

RH: Yes, I definitely let children know that saying something mean, bullying someone, or spreading gossip—even sexy gossip—when they are communicating with others online can make a person feel crummy and hurt that person’s feelings. This is something all our kids need to know not to do.

SW: In this age of Facebook and other social networking sites, do you give preteens and teens any advice to follow in the new chapter?

In order to protect kids from danger, I include a list of rules for the Internet for them to keep in mind whenever they go online. Parents and teachers can reinforce that these rules are ways to ensure kids’ privacy and safety. Here are a few of the rules:

  • Never use your real name;
  • Do not post any personal details, such as your telephone number,
    street address, or the name of your school;
  • Do not say you’re a kid; and
  • Never give your password.

SW: If a child’s parents are unable to discuss unpleasant and confusing sexual images, what should the child do?

I recommend that the child seek out another trusted adult, such as the school nurse or psychologist or the child health care professional, to discuss what s/he has seen. Similarly, if parents are not able to discuss these Internet events—and some aren’t—asking another trusted adult in the family, a neighbor, or their health professional for help can often help their child.

SW: I hear you’re working on a new picture book for very young children. Could you tell me more about it?

It’s a picture book for very young children ages two-and-a-half and up about naming all the outside parts of their bodies. It is normal, healthy, and developmentally appropriate for young children to want to know “the science names” for all of these parts, so they will learn early on that having these parts—whether you’re a girl and have a vagina or you’re a boy and have a penis—is as normal and healthy as having elbows, chins, and other body parts. When young children can name these parts, they feel proud of the body they have—a feeling that will help them all through their childhood and as they go through puberty and adolescence.