Struggle, Self-Love & Survival: Growing Old With HIV

September 18, 2017  By AIDS United

The following is a guest post by Eric Jannke of Let’s Kick ASS Palm Springs, published in coordination with National HIV/AIDS and Aging Awareness Day (NHAAD), held each September 18 to call attention to the challenges that older Americans face in terms of HIV prevention, testing, care and treatment.

 

Me, getting old with HIV. This was not the plan. This was not the plan at all.

I grew up assuming a lot of things about the world. Like there would always be health. That was such a deep assumption that I didn’t recognize it as one until it went away. Maybe that’s how it generally is, we notice the absence of things we’re accustomed to.

But it did go away, my health. I was careful, but somehow got HIV anyway. I honestly don’t know who or how, and have always been grateful for that. No blame. Life happens.

I ask a lot of questions. I want to know other people’s thoughts. The world I grew up in, there was one right way to do just about everything. The world I know now has many right ways, or no right ways, depending on how you look at it. I asked people their thoughts about HIV & Aging. What was most important?

More research, said one. Acceptance, said another. A positive attitude, said a third. A positive attitude? Really?

Before 1996, when HIV infection was a certain death sentence, we all developed survival strategies. It’s hard to believe they worked since so many people using the same strategies died. Having a positive attitude was one of those strategies. Somehow we were encouraged to experience beatitude through the hell of this illness. It encouraged us to look inwards, some said. “You have to understand that it is a gift,” we were told. “A gift,” said one friend. “If it’s a gift, I want the receipt. I’m taking it back, and I don’t want anything else they have.” And now, 30 unexpected years later, someone says to me positive attitude. We talk, and agree that if nothing else, it makes living easier. Staying mostly positive doesn’t happen by itself. It happens because we make it.

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I’m part of the leadership for a group called Let’s Kick ASS Palm Springs. ASS stands for AIDS Survivor Syndrome. You don’t have to be HIV positive to have it. Think of it as a variation of PTSD (post-traumatic stress disorder). It is a very real thing.

Watching your friends die—tens, dozens, hundreds of people you have known and cared for—it screws with you. As a young man, I moved to San Francisco to be part of a community and to fit in somewhere, but when I got there I found that the community was busy dying. Everyone close to that community, infected with HIV or not, was traumatized by the magnitude and horror of the loss.

It isn’t a pretty way to die. One friend had more than 70 perforated ulcers lining his digestive tract, starting in the back of his mouth, down his esophagus, ending inside his rectum. It took him two years to die, even with all those holes. I would stand with him on the fire escape, keeping him from blowing away in the fierce winds, so he could have a cigarette. He didn’t get to age with HIV. I’ve been infected longer than he was ever alive.

Readily visible in our community are isolation, depression, a struggle to find meaning. People are isolated because they have lost so many of their friends. They are isolated by their own physical limitations. They are isolated by poverty. Many of us had to leave careers that were just getting started, freezing our incomes at that level. What was a livable income in 1994 is significantly less so in 2017. We stopped work because we had to. We were dying. I know people who were ordered to go on disability by their boss, compassionately, who refused to let them die at work. Then some of us didn’t die. And then we realized that we weren’t going to die of AIDS after all, that the new drugs it was so hard to believe in were actually working.

Today, our Kaposi’s sarcoma lesions are mostly gone, replaced by more common skin cancers. AIDS is gone, now classified as stage 3 HIV infection. HIV no longer means get your affairs in order, make peace with the world you have known and be ready to leave it, uncomfortably. Now we are living with a manageable chronic illness, and living means aging. It can mean aging with an immune system that never fully recovers. Some of us spent too long with single digit T-cell counts, and that measure of immune health will never go into a truly healthy range. The best we can do is get out of the “you will die from every passing infectious agent” range. Some of my friends won’t travel by air anymore. Others travel with antibiotics for the inevitable bronchial infections contracted on planes.

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Last week I traveled with my box of antibiotics to the United States Conference on AIDS (USCA), representing Let’s Kick ASS Palm Springs. I was lucky enough to get an HIV 50+ scholarship, and the National Minority AIDS Council covered all my expenses. We had a day of visits to Capitol Hill, asking for continued funding to support HIV research and existing programs to prevent more infections. We were a bunch of people in varying stages of infirmity, reminding the world that we still exist, we still need care, and that we don’t want anyone else to go through this. If we can pull that off, our lives will feel worthwhile.

HIV research is human research. We all have immune systems, and we know a lot more about them because people, scientists, have dedicated their lives to chasing tiny bits of answers to questions we barely know enough to ask. Because of their dedication we have fewer AIDS-related deaths now, but fewer deaths also means more people living longer and growing older with HIV. Even on our meds, aging with HIV means dealing with a host of co-morbidities (independently diagnosable conditions associated with aging) possibly decades before they would typically become issues for people not infected with HIV. HIV specialists are becoming gerontologists not because they want to, but because they have to. It’s difficult to untangle causation from correlation in all these issues. Is it the HIV itself or side effects of the medications? Is 50 the new 75, and what about long-term inflammation?

Answering these questions and, ultimately, ending the HIV epidemic takes a lot of time, money, and ingenuity. It also takes a lot of dialogue. The HIV epidemic can only go away by acknowledging it is here and by finding ways to talk about it that everyone can understand.

Talking about HIV and aging means talking about how we achieve, or do not achieve, health care in our society. It means talking about poverty. About race. And gender, and sexuality. None of these are comfortable topics for most Americans. But there is no logic to support continuing silence. While we don’t talk, people are still being infected, at all ages from adolescents to octogenarians. This is morally unacceptable. It’s also expensive. It’s expensive to stop the epidemic, but it is so much more expensive not to.

When Is There Zero Risk of Transmitting HIV?

 More leading health experts and organizations endorse “Undetectable = Untransmittable.” This is a great article that raises some important points to consider! Reprinted from The Advocate.

Over the past year, hundreds have joined the growing list of health experts and organizations around the world to endorse the Undetectable Equals Untransmittable Consensus Statement. The U=U Consensus states that a person living with HIV who has an undetectable viral load through treatment cannot transmit the virus to a sexual partner.

Issued by the Prevention Access Campaign, U=U is based upon the findings of two major scientific studies on transmission risk: HPTN 052 and PARTNER, and a smaller study called “Opposites Attract.” In all of the studies, there were no transmissions of HIV (between serodiscordant, or mixed-status, couples) when the partner living with HIV was undetectable. Over 58,000 sex acts were counted in one of the studies with not a single transmission.

Global HIV and AIDS resource NAM AIDSMap is the latest to endorse the consensus. “The scientific evidence is clear,” says Matthew Hodson, NAM’s executive director. “Someone who has undetectable levels of virus in their blood does not pose an infection risk to their sexual partners.”

Many experts are now using the terminology “zero chance” in regards to the risk of transmission when a person’s viral load is vundetectable. For those living with HIV, this is vital and life-changing information that can not only influence one’s physical health, but have an enormous impact on mental and emotional health as well. U=U will help end the HIV epidemic and may even aid in eliminating stigma.

“The fear of catching HIV from a sexual partner fuels HIV stigma,” Hodson explains. “Which is why it’s so important that the ‘undetectable equals untransmittable’ message is heard and understood. Those of us with diagnosed HIV have had to live with the idea that our bodies are dangerous. This has had a profound emotional impact on many people.”

Last year, Bruce Richman, executive director of Prevention Access Campaign, unveiled the short documentary film Undetectable = Untransmittable (produced by Linus Ignatius). Richman says, “Exaggerating the ‘danger’ we are to others is an act of violence against all of us with HIV, and makes us vulnerable to a myriad of harms and injustices. We deserve and demand accurate and meaningful information that is not only critical to our social, sexual, and reproductive health, but is essential to end the epidemic.”

International HIV Conference Reveals Exciting Progress in Global HIV Fight

Highlights from the research presented at the 9th International AIDS Society Conference on HIV Science in Paris. Thanks to the team at Poz.com for this great coverage that I think makes interesting reading.

August 22, 2017  By Benjamin Ryan

The fight to combat the global HIV epidemic is charting exciting progress on numerous fronts. This includes a rapidly increasing proportion of those living with the virus on treatment as well as falling infection and AIDS-related death rates. Additionally, there have been various promising advances in research into new antiretroviral (ARV) treatments and forms of pre-exposure prophylaxis (PrEP), not to mention vaccines and means of prompting long-term viral remission that may allow some people with the virus to stop taking daily drugs.

The more than 7,000 HIV researchers and advocates who attended the 9th International AIDS Society Conference on HIV Science (IAS 2017), which took place in Paris from July 23 to 26, learned of these and other signs of great hope for the future of the worldwide epidemic. However, they were also confronted with the finer details of the considerable challenges ahead, most notably flat or declining funding from wealthy donor nations for efforts to fight the epidemic in poorer nations.

To follow is a summary of the major findings presented at the conference. Click on the hyperlinks for greater detail about any of the studies. For a complete newsfeed of all IAS 2017 reporting, click here.

Linda-Gail Bekker, PhD, the International AIDS Society (IAS) President and International Scientific Chair of IAS 2017 in Paris, speaking at the opening sessionBenjamin Ryan

Global Treatment

major announcement from Joint United Nations Programme on HIV/AIDS (UNAIDS) kicked off the conference: An estimated half of all people living with HIV worldwide,19.5 million out of 36.7 million, are now on ARV treatment. According to a lengthy UNAIDS report on the state of the global epidemic, in 2016 an estimated 70 percent of the global HIV population had been diagnosed, 77 percent of those diagnosed were on ARVs and 82 percent of those on ARVs had a fully suppressed viral load. Since 2014, UNAIDS has pushed nations to get each of those three figures to 90 percent, otherwise known as the 90-90-90 targets.

Treatment rates have soared while new infections and AIDS-related deaths have dropped considerably in eastern and southern Africa in particular. Meanwhile, Central Asia and Eastern Europe is the only major region that has seen a worsening epidemic, with its HIV infection rate rising 60 percent and its AIDS-related death rate rising 27 percent during the 2010s.

UNAIDS

UNAIDS

Excitingly, a highly reliable survey conducted in Swaziland and presented at IAS 2017 found that in just five years the hard-hit nation had doubled the proportion of its HIV population on ARVs while cutting its new infection rate in half.

Velephi Okello of the Swaziland Ministry of Health at IAS 2017 in ParisBenjamin Ryan

Globally, people with HIV are starting ARV treatment progressively earlier. However, the median CD4 count at treatment initiation remains above 350, indicating that considerable work needs to be done to move closer to treating everyone living with the virus, as recommended by the World Health Organization (WHO).

The continued flat funding seen in recent years for the effort to fight HIV in lower-income nations threatens progress in treating HIV on a grand scale. One analysis presented at the conference projected that if funding continues only at current levels, the proportion of people with the virus on treatment and virally suppressed will stagnate accordingly.

Jessica McGillen, PhD, presents a key slide that projects the impact of U.S. funding on viral suppression rates in 18 sub-Saharan African nations.Courtesy of Benjamin Ryan

Another threat to progress fighting global HIV is WHO’s finding that HIV drug resistance is on the rise. In numerous nations recently surveyed, 10 percent of those starting HIV treatment had a strain of virus resistant to some of the most widely used ARVs.

HIV Treatment as Prevention

Yet another study has seen no transmissions within a large cohort of partners when the HIV-positive member of a mixed-HIV-status couple is on ARVs and has an undetectable viral load. Between the Opposites Attract study reported at the Paris conference and the previously reported PARTNER study, there are now data on about 35,000 condomless sex acts between such gay male partners without a single HIV transmission. The PARTNER and HPTN 052 studies have also seen no transmissions between heterosexual partners within such a context. The PARTNER study is currently in a new phase to gather more data from gay male couples.

According to scientific experts discussing these collected research findings at the Paris conference, the risk of transmitting HIV through condomless sex when an individual has an undetectable viral load is so vanishingly small that it is effectively zero.

Another study presented at the conference raised worries about how poor adherence to ARVs among youths may compromise the powerful effects of HIV treatment as prevention. An analysis of 13- to 24-year-olds receiving ARV treatment in Philadelphia found that about one in six were episodically at high risk of transmitting the virus.

PhiladelphiaIstock

Viral Remission

Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), says he no longer talks about an effort to develop an HIV cure, per se. Instead, he prefers the goal of prompting “viral remission” or “post-treatment control” of the virus, in which an individual maintains an undetectable viral load without daily ARV treatment. Conference attendees learned that a 9-year-old South African child has been in such a state for eight years, following just 40 weeks of ARV treatment begun after the child contracted the virus at birth.

Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), speaking at IAS 2017Benjamin Ryan

An additional presented case study described how a man who contracted HIV only days before starting Truvada (tenofovir disoproxil fumarate/emtricitabine) as PrEP and who was quickly put on a full HIV treatment regimen spent seven months off treatment before experiencing a viral rebound.

HIV Prevention, Including Vaccines

A major push in the HIV research field is to find effective so-called broadly neutralizing antibodies against the virus for use in vaccines, as PrEP or as treatment. Addressing concerns about how to mass-produce such antibodies, one team of researchers found that they could prompt their production by immunizing calves.

In an early-stage study, one HIV vaccine candidate showed promise by prompting a robust immune response in a small collection of volunteers. Pending the results of another study, this vaccine may go into an advanced global trial as soon as late 2017.

Following definitive studies showing that voluntary medical male circumcision reduces female-to-male HIV transmission by about 60 percent, there has been a massive effort to circumcise men in sub-Saharan Africa in recent years. Research over the past few years has begun to show that this endeavor has likely driven down infection rates among men. Now, a study presented at IAS 2017 indicated that women also likely benefit from the male circumcision push, with lower rates of associated HIV and herpes simplex virus type 2.

Cancer

major forum exploring how much HIV and cancer treatment researchers have to learn from and share with one another as they develop highly advanced forms of treatment preceded the conference. The two fields share the goal of overcoming the immune system’s inability to combat a malignant force, be it a tumor or HIV-infected immune cells.

HIV Drug Development

The long-acting injectable regimen of cabotegravir and Edurant (rilpivirine) given every four or eight weeks successfully suppressed HIV over a 96-week period among 90 percent of participants in a major trial.

Gilead Sciences recently applied for approval from the U.S. Food and Drug Administration (FDA) of its new combination tablet of the experimental integrase inhibitor bictegravir plus the contents of the company’s Descovy (emtricitabine/tenofovir alafenamide). The FDA granted the tablet priority review; a decision is expected by February 12, 2018. A study presented at IAS 2017 found that compared with other approved regimens, this combination had fewer side effects and was similarly effective in suppressing HIV among those starting ARVs for the first time.

Another study found that the first single-tablet regimen containing a protease inhibitor, specifically Prezista (darunavir), was highly effective in suppressing HIV. When combined with Tybost (cobicistat) and Descovy (emtricitabine/tenofovir alafenamide), Prezista led to a continued undetectable viral load among 96 percent of those who switched from a successful multi-tablet ARV regimen.

Additionally, a recent study found that among first-timers to HIV treatment, a new single-tablet combo regimen containing the investigational non-nucleoside reverse transcriptase inhibitor doravirine, Epivir (lamivudine) and Viread (tenofovir disoproxil fumarate) causes fewer central nervous system and metabolic side effects and is as effective as Atripla (efavirenz/tenofovir disoproxil fumarate/emtricitabine).

PrEP

Researchers are fast at work exploring new forms of PrEP to help address issues such as toxicity, adherence and the need for novel, female-specific forms of HIV prevention.

One study validated ongoing advanced research into a long-acting injectable form of PrEP, finding that long-acting cabotegravir given every eight weeks was well tolerated and yielded drug levels expected to afford maximum protection against HIV. Additionally, a study of a vaginal ring form of PrEP given to teenage girls in the United States found that an ARV-containing monthly ring was safe and that the participants used it well.

Various studies addressed the ongoing question of how starting PrEP affects sexual risk taking and rates of sexually transmitted infections (STI) among men who have sex with men (MSM). An analysisof British MSM on Truvada for HIV prevention found that they tended to fold PrEP into their set of personal HIV risk-reduction rules, sometimes easing those rules when taking PrEP. Self-reporting indicated that the men did not tend to simply abandon condoms wholesale. Meanwhile, a long-term study of MSM in the United States found that those who started PrEP tended to proceed to report higher rates of condomless sex with casual partners, in particular with HIV-positive partners.

At London’s 56 Dean Street, the city’s main sexual health clinic catering to MSM, gonorrhea diagnoses fell 24 percent between 2015 and 2016 while HIV rates dropped 42 percent. This occurred as use of PrEP soared among men using the clinic’s services and as the clinic, instigated impressive new policies to encourage HIV and STI testing and to treat individuals for both types of infections as soon after diagnosis as possible.

The 56 Dean Street clinic in LondonBenjamin Ryan

PrEP use in the United States continues to increase, reaching the current estimate of 136,000 users. However, the rate of increase in those starting PrEP seen in each progressive quarter has slowed (in other words, about the same number of people are beginning PrEP each quarter). Troublingly, PrEP use is apparently still largely relegated to white MSM age 25 and older, raising concerns that those at the very highest risk for the virus, young Black MSM in particular, will for the most part fail to benefit from the highly effective HIV prevention method that has now been on the market for five years.

new analysis found that the non-daily dosing protocol for PrEP, known as on-demand PrEP, studied in the French and Canadian IPERGAY trial of high-risk MSM worked well even when the men had sex infrequently. There have been concerns that the high level of protection seen among men in the study, who were instructed to take Truvada only in the couple of days surrounding sex, was likely a by-product of the fact that the men tended to have sex so frequently that they often wound up maintaining a relatively steady level of Truvada in their bloodstream—rather than the result of the particulars of the dosing protocol.

separate study of Dutch MSM examined the reasons why they preferred on-demand versus daily PrEP, as well as their reasons for switching between the protocols or stopping them altogether. An expectation of better adhering to one protocol over another was found to be a major deciding factor. Additionally, a national survey of U.S. MSM found that concerns about the cost of PrEP and associated side effects are major barriers to men using Truvada for prevention.

Long-Acting Injectable HIV Treatment Moves Closer to Reality

Interesting reading from TheBody.com about long-acting injectable HIV treatment.

Long-acting injectable treatment takes another step closer to becoming a real-world option for people living with HIV. The latest 96-week data from the LATTE-2 study, which is investigating long-acting injectable maintenance therapy for people with HIV, were presented at the 2017 International Conference on HIV Science, in Paris.

While viral suppression rates were very high, another notable finding was how much participants appreciated not having to take pills every day — another sign that long-acting treatment could translate well to the real world and become the future of medication adherence.

What Is Maintenance Therapy?

“Maintenance therapy” is the concept that, after people with HIV achieve and sustain an undetectable viral load through current conventional means (a treatment regimen of at least one pill once a day, containing three or four drugs) for an extended period, they can switch to a regimen containing fewer drugs (either one or two). The idea is that they can take fewer drugs, thereby being exposed to less toxicity while still maintaining an undetectable viral load.

This is not yet a standard practice in real-world settings, but it could eventually mean that, instead of taking a pill containing three or four drugs every day, you take a pill containing only two. However, the LATTE-2 study takes this idea even further and proposes that, instead of taking a pill every day, people could receive an injection of long-acting drugs lasting up to four or eight weeks.

LATTE-2 Study Background

Since the study started a couple of years ago, the results have continued to be very promising (particularly last year’s 48-week data), and the current 96-week data are equally positive.

The study began with an “induction phase,” during which all participants were put on a daily oral treatment regimen containing cabotegravir and Epzicom (Abacavir/3TC, Kivexa). After 20 weeks, those who achieved an undetectable viral load (286 participants) were then randomized to receive one of three options:

  1. A long-acting injectable regimen containing cabotegravir + Edurant (rilpivirine) every four weeks (the Q4W group).
  2. A long-acting injectable regimen containing cabotegravir + Edurant every eight weeks (the Q8W group).
  3. The previous daily oral regimen of cabotegravir and Epzicom (the control group).

LATTE-2 Study Results

After 96 weeks, 94% of those in the Q8W group maintained an undetectable viral load, compared with 87% in the Q4W group and 84% in the oral control group.

“Serious adverse events,” meaning occurrences that are considered severe or damaging (but not necessarily a reaction or side effect), occurred in 10% of the Q8W group, 10% of the Q4W group and 13% of the control group, but the researchers noted that none were related to the drug.

Severe drug-related adverse events were reported in 2% of the Q4W group, 4% of the Q4W group and 2% of the control group. The most common drug-related adverse events were cold-like symptoms, headache and diarrhea.

Injection site reactions, meaning pain or discomfort felt afterward at the part of the body where the injection took place, were common (97% in the Q8W group and 96% in the Q4W group) but were mostly mild and moderate, with less than 1% being classified as severe.

In terms of “virologic failure,” meaning the treatment wasn’t able to keep the person’s viral load undetectable, there were only two cases in the Q8W group, one in the control group and none in the Q4W group. Out of these, only one in the Q8W group was linked to drug resistance (when a person’s HIV develops resistance against a drug that the person is taking). However, none of these occurred after week 48 and up to week 96.

Freedom From Daily Pills

Perhaps more important than viral suppression data was the overwhelming satisfaction felt by study participants about not having to take pills every day.

Based on a survey, 99% of the Q8W group and 97% of the Q4W group reported being very satisfied with their current treatment, compared with 91% of the control group. When asked how satisfied they would be to continue their current treatment, 99% of both the Q8W and Q4W groups expressed the desire to continue long-acting injectable treatment, compared with only 78% of the control group.

“It’s surprising to me — patients at our site that are on the study — how much they appreciate not having to take pills. I think that’s something that I really didn’t calculate. There’s this kind of feeling of freeness from being bound to oral therapy every day,” said lead study author Joseph Eron Jr., M.D., at an IAS 2017 press conference.

For now, the injections have to be administered by health care professionals, but the drug manufacturers are looking at potential ways to make the regimen self-administered.

The injectable drug regimen will move on into phase-3 clinical trials, two of which are fully enrolled, according to Eron.

Warren Tong is the senior science editor for TheBody.com and TheBodyPRO.com.

Follow Warren on Twitter: @WarrenAtTheBody.

Scientists Shed Light on How HIV Raises Heart Disease Risk

Researchers found a way to block a protein linked with blood clotting and inflammatory processes using a drug derived from tick saliva.

August 30, 2017 – reprinted from Poz.com

Researchers have uncovered a new pathway by which HIV leads to the chronic inflammation and immune activation associated with an increased risk of cardiovascular disease. Using an experimental drug based on an anticlotting factor in tick saliva, the scientists were able to block this pathway in primates. Such success indicates that a drug may one day be developed that helps mitigate the increased risk of heart disease associated with HIV.

Even when taking a successful antiretroviral (ARV) regimen, people with HIV have up to a two-fold increased risk of cardiovascular disease, including heart attack and stroke, compared with HIV-negative individuals. Researchers believe that the chronic inflammatory state and the persistent activation of the immune system to which the virus gives rise is likely a major driver of this increased risk.

major clinical trial called REPRIEVE is currently investigating whether a drug from the cholesterol-lowering class called statins may mitigate this risk and provide other health benefits among people with HIV who would not otherwise qualify for a statin.

Publishing their findings in Science Translational Medicine, National Institute of Allergy and Infectious Diseases (NIAID) scientists studied blood samples from people with HIV. They discovered elevated levels of immune cells known as monocytes that expressed high levels of a protein known as a tissue factor, which is linked with blood clotting and processes that give rise to inflammation.

The scientists further discovered that the level of such monocytes remained high regardless of whether the HIV-positive people who provided the blood samples had a fully suppressed virus thanks to ARV treatment.

Next, the researchers exposed the blood samples to an experimental drug called lxolaris, which is based on an anticlotting factor found in tick saliva. Previous research has shown that lxolaris blocks the cellular pathway that activates the tissue factor protein. The investigators found that the drug indeed shut off that particular protein in monocytes and did not otherwise affect normal cell function.

Studying monkeys infected with SIV, HIV’s simian cousin, the investigators found that the animals also had high levels of tissue-factor-expressing monocyte cells. So they treated five monkeys with lxolaris and found that this lowered levels of biomarkers that predict abnormal blood clotting and immune activation.

This finding signifies that by targeting the tissue factor pathway, lxolaris may lower some risk factors for cardiovascular disease among people with HIV. The drug has not yet been tested in humans, however, so considerable research would be needed to determine whether lxolaris may slow the inflammation and clotting processes that raise the risk of cardiovascular disease among people with HIV.

Remembering Princess Diana’s AIDS Work 20 Years After Her Death

At the height of AIDS fears, she showed that it was OK to hug people with HIV. Thanks to Poz.com for this great article.

August 31, 2017

Twenty years ago, on August 31, 1997, Princess Diana died following a car crash in Paris. She was 36 and had rarely been out of the global spotlight since marrying Prince Charles in 1981. But the British royal was much more than a style icon and celebrity gossip mainstay. The Princess of Wales helped break down AIDS stigma and raise awareness of the epidemic.

In April 1987, for example, she officially opened Britain’s first AIDS ward, at London Middlesex Hospital. As the BBC reports, before the event, media outlets speculated about what she would wear—specifically, whether she would don protective gloves. At the time, many people feared HIV could be spread through casual contact. To teach the public otherwise, Diana did not wear gloves. She shook hands with a man who had AIDS. Images of that handshake helped change attitudes about HIV.

Similar scenarios replayed over the years, notably at a pediatrics ward in Harlem, New York, in 1989, where she held a boy with AIDS in her arms, and at Casey House, an AIDS hospice in Toronto, in 1991.

Thks to all who recognized this wk’s 25th anniversary of Princess Diana’s landmark Casey House visit http://bit.ly/2eRk9nK @HenryOfWales

One of  her memorable AIDS contributions, including a speech in which she stated: “HIV does not make people dangerous to know, so you can shake their hands and give them a hug. Heaven knows they need it.”

Known for her humanitarian work, including efforts to ban landmines, Princess Diana was a patron of the National AIDS Trust (an HIV organization) in the United Kingdom, where she attended events, delivered speeches and raised awareness since 1990.

At her funeral, Sir Elton John performed his 1973 song “Candle in the Wind.” He then released the new version, which, according to Forbes, remains the best-selling chart single of all time. Proceeds of the song—it has sold more than 33 million copies worldwide—go toward Princess Diana’s charities.

Today, her legacy of AIDS advocacy lives on in her children, notably Prince Harry who has taken a series of HIV tests in public to raise awareness and who does HIV-related charity work in Lesotho.

As The New York Times noted this week, younger people today, even in Britain, don’t seem to know much about Princess Diana—except how she died and who her children are. Perhaps the 20thanniversary tributes will rekindle her light.

If you want to learn more about Princess Diana, check out the four-hour documentary produced by ABC and People magazine and titled The Story of Diana.