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Many folks with HIV stay silent about their status. The reaction to Charlie Sheen's story shows why.

Many people say the hardest part of living with HIV is the stigma. Here's some easy ways to treat HIV-positive people with compassion.

Many folks with HIV stay silent about their status. The reaction to Charlie Sheen's story shows why.

This morning, actor Charlie Sheen made a huge announcement: He's HIV-positive.

Photo by MIchael Buckner/Getty Images.


The move comes after the Internet exploded yesterday with speculation about the actor's status after the National Enquirer promised a "bombshell world exclusive" about the actor's private life.

All totally valid criticisms of Sheen aside, no one deserves to have their personal information shared without their permission. Sheen probably wouldn't even have shared his status without the threat of extortion hanging over his head, because there is still so much stigma and so many misconceptions surrounding an HIV diagnosis. But now that he's come forward, it's significant that he was able to share his story in his words before anyone else could.

Individuals with HIV should be able to live without shame and with the freedom to be open about their lived experiences.

Reactions to Sheen's announcement show we still have a long way to go to overcome stigma about the virus.

Sheen shares that he was diagnosed about four years ago. Why did he keep it secret for so long? Uh, the cover of this magazine might give a hint.

Photo via National Enquirer.

Treating someone's HIV status — a private medical condition that is likely irrelevant to everyone who'll read it — as a sensationalist gossip topic isn't just gross, it's wrong. Not to mention: HIV and AIDS aren't interchangeable diseases — to proclaim, on the cover of a magazine no less, that Charlie Sheen not wanting to disclose his HIV diagnosis is an "AIDS COVER-UP" wildly misrepresents what an HIV diagnosis means in 2015. Media reactions like this are why he and millions of other Americans are hesitant to disclose their HIV status.

Misconceptions and stigma about HIV play a large factor in why many with the diagnosis stay silent, often forever.

“We're finding, despite the fact that we've been living with this disease for 30 years, that the greatest challenge we're facing is stigma," David Furnish, chairman of the Elton John AIDS Foundation, said in an interview with The Advocate. "[That's] the biggest hurdle we have to overcome."

Stigma against HIV-positive people is a large reason why discrimination is so rampant. Loss of housing, employment, and close relationships is common for people with HIV or AIDS in ways that many folks with other life-threatening conditions don't face.


Retired NBA player Magic Johnson publicly disclosed his HIV-positive status in 1991. Since then, he's become an outspoken advocate for safer sex and HIV/AIDS prevention. Photo by Stephen Dunn/Getty Images.

Here's what you need to know about HIV:

Stigma is a tricky thing that many people don't realize influences how they treat someone — because it can seem so normal. Remembering these facts will help you destigmatize HIV and AIDS when you find yourself in conversations about it in the real world.

1. HIV and AIDS are not interchangeable.

HIV stands for human immunodeficiency virus, which is a tiny organism in the body.

AIDS (acquired immunodeficiency syndrome) refers to the condition one can get after HIV completely compromises their immune system.

An individual can have HIV for many years and never get AIDS. Only a doctor can make the call whether someone has AIDS. Thanks to progress in medical care, people in the U.S. who take antiviral treatments often never get AIDS.

2. The risks of contracting HIV through everyday contact like handholding or sharing a swimming pool is minimal.

HIV is not spread through the air, casual touch, tears, sweat, or saliva. So it's OK to use the same bathroom, eating utensils, and water fountain. In the U.S., the most common way people are infected is through penetrative sex, which is why it's important to use condoms.

But it's not just through sexual activity. There are reasons to be extra cautious if, say, you have a cut on your hand and you help your friend with HIV bandage a cut on her hand. HIV is transmitted through certain body fluids, like blood, coming into contact with the bloodstream, damaged tissue, or a mucous membrane like the mouth.

3. HIV is not a punishment.

No one deserves to get HIV. It is not a condemnation from God or some sort of punishment for certain acts that others may not approve of. When you read your magazines in the checkout aisle of the grocery store, don't buy into all the correlations between Charlie Sheen's history of being a "womanizer" or his relationships with sex workers meant to imply that his HIV infection is a punishment for that. It only takes one bad needle, one broken condom, or one partner to transmit the disease.

If you cite Sheen's wild past and say he got what he deserved, that assumption reflects on all people who have HIV, no matter how careful they were in their lives. It reinforces the myth that HIV-positive people are being punished for bad decisions, a stigma that they face every day.

4. People of all genders and sexual orientations can get HIV.

For a long time, HIV was seen as something only gay and bisexual men should worry about. But according to the CDC, 23% of people with HIV are women. Of women who were newly infected, 84% were from heterosexual contact.

While most folks get HIV from sexual contact, remember that there are other ways people get infected, like being born with it or through a blood transfusion. In general, it's just best not to assume how they got HIV. It's irrelevant at this point anyway, right?

5. You can't tell whether someone is HIV-positive by how they look.

Just because someone doesn't "look sick" doesn't mean they're HIV-negative. Many HIV-positive people can be symptom-free for years before discovering they are infected. That's why it's so important to get tested regularly. You'll be able to get early medical intervention and prevent inadvertently infecting someone.

Actor Danny Pintauro, best known for his role as Jonathan Bower on the TV show "Who's the Boss" as a child, came out as HIV-positive this year. Photo by Matt Winkelmeyer/Getty Images.

Here's how to handle conversations about HIV and AIDS in real life to stop stigma in its tracks:

Be mindful of your language when talking about HIV. A lot of common terms can reinforce stigma. For example, the term "clean" when referring to negative HIV status implies that someone who is HIV-positive is dirty.

Treat a person respectfully when they disclose their status. Be compassionate in your response and make sure to respect their privacy. Their disclosure is not consent to being an open book about sexual history, medical treatment, or how they contracted the virus. And just because they disclose their status to you doesn't mean they're giving you permission to reveal it to everyone else, too.

Do not speculate on or disclose someone's HIV status without permission. Basically, don't do what the Enquirer did with Charlie Sheen.

Get tested. Knowledge is power. Visit this link to find a place near you. A lot of places offer free testing, which can be completed in a few minutes!



Olympic gold medalist Greg Louganis tested positive for HIV in 1988. He is an advocate for LGBT and people diagnosed with HIV/AIDS. Photo by Jason Kempin/Getty Images for The Point Foundation.

Educating yourself about HIV just doesn't make you more knowledgeable, it makes you a real force in reducing HIV stigma.

HIV stigma is very real — and it has dangerous consequences. It keeps people from getting treatment and but also getting the care and support from others that they (all of us?) need. Many studies have found there are significant public health risks because of stigma.

We're probably never going to persuade everyone to treat Charlie Sheen's diagnosis with respect and dignity or prevent them from making stupid TIGER BLOOD jokes. But the lessons we learn from how we talk about Sheen's announcement have real-world repercussions on non-famous people living with HIV stigma every day.

If we work hard to reveal the reality — that living with HIV isn't a death sentence, that there's nothing to fear from HIV-positive individuals — we can create a world where folks can divulge their status on their own terms. It'll be a better, safer world for everyone.

Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less

Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less
True

Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."