Ever since I became one of the first drag performers to perform at The 519’s AIDS VIGIL back in 2019 I have made it my business to attend every event that I can. Now, I have to tell ya…it was hotter than two sissies in a prison camp on a Friday night! Instead of the full long hair with something sparkly, I pulled out a short and sassy look with a light sheer dress and sandles. I looked like somebody’s over made-up aunt at the barbeque, but I was comfortable.
When my husband and I arrived, we discovered that the entrance to Barbara Hall Park was closed oH and gated. All the homeless people who basically live in that space had been cleared out and the GREENSPACE stages and equipment had already been put up. Mind you…that event didn’t start for another couple of days. Perhaps The 519 Committee felt since many politicians were attending the vigil that it was a safety issue. But the previous years they didn’t do this. This sparked a debate and protest about how the under-housed were evicted from the park.
So, while waiting for the gates to open I (along with many others standing out front) got accosted by a man shoving his cellphone in my face recording everyone speaking about the event or the protest that was beginning across the street. I told the guy to get his phone out of my face. When he didn’t, I grabbed it and we tussled for a moment over it. He started screaming that he was being assaulted. Some woman walked over and started filming our
tussle. The guy started yelling that he was going to have me arrested for grabbing his phone. This woman started saying that I was assaulting him by grabbing his phone. My husband engaged her and that is when she disclosed that they were “journalists” (this will come up later in this article). My husband told a cop about the situation, and he said that there was nothing illegal about filming people without their permission. Doesn’t sound right if the person filming is antagonizing the people around. He was looking for someone to punch him so he could catch it on video.
By this time the gates were open. John and I went in. The “journalists” stayed outside.
As with any arrival in the beginning of the vigil you always run into faces of friends and allies that you haven’t seen in a while…which is always a blessing. For those of us who are long term survivors it is a declaration of our journeys. We’re still here and we are still in the fight against stigma.
Randy Spearhead, Krist yn Wong -Tam, Ty Corde & myself
The hostesses Chelsea Davis & Susan Shumba did a lovely job and gave some new perspectives (at least for me) at one of these ceremonies. They reminded us that AIDS is a big problem for women and transwomen as well as AIDS IS NOT OVER. I’m always speaking to that truth when. I am asked to do speaking engagements.
When I sang “Undetectable” back in 2019, former Toronto mayors Barbara Hall & John Tory were there and have been at all the vigils I’ve attended since. Another staple at these events is NDP Representative Kristyn Wong-Tam who is a member of our LGBTQ2+ Community. And our current Mayor Olivia Chow was part of the story telling section of the ceremony. She spoke of how she and other went and knocked on doors back in the 80s to help people living with AIDS the healthcare they needed. And one woman broke down when she talked about her father who died of AIDS when she was only four years old. Olivia consoled her and lit her candle…a really beautiful moment.
And while we were hearing inspiring speeches and lovely tributes there was a protest of people yelling and chanting thing against The 519 outside of the park on Church Street. Earlier when we arrived it was still daylight. My husband walked around and checked out the tables that were set up. He met a woman named Iszy King who works with MAGGIE’S (Canada’s oldest sex worker justice initiative). When we talked with her about the eviction of the people in the park, she told us that she was there handing out sandwiches. She said that there were no military style machinery or physical beatings. It was just the police asking people to evacuate the park. But the spin that was going on outside was that the police came in with brute force to clear the park. And we learned that one of the
journalists” that were outside shoving their phones in everyone’s faces had been arrested at a previous protest. So, I question if they were “journalists” at all. It almost feels like they were the white folks who join in a protest and then destroy property so that people of colour will take the blame. The guy shoving his phone in my face was trying to evoke violence. It makes a better story. Reminding you that I just grabbed his phone. I didn’t hit me. But I’m sure when he edits his video I will be “Public Enemy #1”.
I think that I’m old enough to have witnessed and gathered lived experience to have the opinion I am about to share. One of the things that bugs me the most is we have a lot of people who like to complain and protest but they aren’t really fixing the problem. These “journalists”…are they volunteering at a homeless shelter? Do they donate food or money to the organization that are trying to help the under-housed? When I speak at events, I always tell the audience that if you really want to help go volunteer at an organization like the Toronto People With AIDS Foundation. Go work in the food bank. Go see the people you are helping. It will change your life and theirs. When I decided to work on improving the lives of people living with HIV, I started creating events and spaces for people like me to socialize and build community because I know that one of the biggest killers of people living with HIV is depression…that sense of loneliness and no support.
Here's a shot of the protesters out in front of The 519. I get them wanting to voice your concerns. I was very upset when my friend Derek Yee died after it was said he was turned away from the intake at Casey House. I didn’t protest. I got involved. I printed articles here about what happened and the film “Walking In These Shoes” by Samuel Ernesto Lopez And then I started sitting on their board for the Casey Awards so I could see who was making these decisions. And often the people who are making these decisions are not HIV+ (which is concerning). I believe that we should be at the table when those decisions are going to aHect us are being made. I’m presently trying to help POSITIVE CONNECTIONS (a program for seniors living with HIV) get oH the ground. We have presently started a movie night called PINK CINEMA and a new game night / game show called THOUGHT YOU KNEW (the world’s only ghetto game show where everyone wins prizes). There’s going to be a lot of knocking on doors but I’m up for it. I believe this is very important. I ain’t getting no younger! But our senior population is getting larger and our infrastructure is not set up or prepared for this fact.
It wasn’t until (June 25th) the day after the vigil that some clarity came from one of our POZTO honorees from last year, Mikiki Burino posted a video on Instagram as he was walking to volunteer at The 519’s harm reduction oHice. In it, Mikiki put in perspective what and why the eviction happened. The GREENSPACE event is a fundraiser for The 519 and requires
the park to be cleared in order to get the liquor license for the event to happen. The people who live in that park were told beforehand that the eviction was happening. They were woken up early with breakfast and supplies before it happened. But the most interesting thing is that this fundraiser helps The 519 continue to feed and get harm reduction to the very people who these protesters claim to care about. So this further proves that this OUTRAGE is fake. If you truly knew the circumstances of what the center does for the community, you would be cheering The 519 for their work. As a person who organizes many smaller fundraisers throughout the year, I can tell you that there are some hard decisions that have to be made for the better good.
For the people who live in the neighborhood I am sure they would love for Barbara Hall Park to be cleared of all of the homeless year-round. But I am kinda glad that for our LGBTQ2+ unhoused population there is a safe space and place for them to get food and harm reduction. This inconvenience of not being able to use that park seems like an easy price to pay for the lives that are saved. I’ve been homeless. Not for a long period of time but I know the uncertainty of what is going to happen out on the streets. Just like we need senior facilities for our community. We probably need a homeless shelter for us as well. So, instead of complaining about the homeless in that park…what are you doing to help those people get oN the streets? This is our community ’s problem. Let’s fix it!
AP Link: https://apnews.com/article/hiv-prevention-shot-lenacapavir-gilead-80fb37e2c5ac9b452488d7b86a10d568
Article written by LAURAN NEERGAARD / June 18, 2025
WASHINGTON (AP) — The U.S. has approved the world’s only twicea-year shot to prevent HIV, the first step in an anticipated global rollout that could protect millions – although it’s unclear how many in the U.S. and abroad will get access to the powerful new option.
While a vaccine to prevent HIV still is needed, some experts say the shot made by Gilead Sciences — a drug called lenacapavir — could be the next best thing. It nearly eliminated new infections in two groundbreaking studies of people at high risk, better than daily preventive pills they can forget to take.
“This really has the possibility of ending HIV transmission,” said Greg Millett, public policy director at amfAR, The Foundation for AIDS Research.
Condoms help guard against HIV infection if used properly but what’s called PrEP — regularly using preventive medicines such as the daily pills or a different shot given every two months — is increasingly important. Lenacapavir’s six-month protection makes it the longestlasting type, an option that could attract people wary of more frequent doctor visits or stigma from daily pills.
Millett said “gaping holes in the system” in the U.S. and globally “are going to make it difficult for us to make sure we not only get lenacapavir into people’s bodies but make sure they come back” twice a year to keep up their protection.
Gilead’s drug already is sold to treat HIV under the brand name Sunlenca. The prevention dose will be sold under a different name, Yeztugo. It’s given as two injections under the skin of the abdomen, leaving a small “depot” of medication to slowly absorb into the body. People must test negative for HIV before getting their twice-a-year dose, Gilead warned. It only prevents HIV transmission — it doesn’t block other sexually transmitted diseases. Some researchers who helped test the shot advise cold packs to counter injection-site pain.
Global efforts at ending the HIV pandemic by 2030 have stalled. There still are more than 30,000 new infections in the U.S. each year and about 1.3 million worldwide.
Only about 400,000 Americans already use some form of PrEP, a fraction of those estimated to benefit. A recent study found states with high use of PrEP saw a decrease in HIV infections, while rates continued rising elsewhere.
About half of new infections are in women, who often need protection they can use without a partner’s knowledge or consent. One rigorous study in South Africa and Uganda compared more than 5,300 sexually active young women and teen girls given twice-yearly lenacapavir or the daily pills. There were no HIV infections in those receiving the shot while about 2% in the comparison group caught HIV from infected sex partners.
A second study found the twice-yearly shot nearly as effective in gay men and gender-nonconforming people in the U.S. and in several other countries hard-hit by HIV.
Ian Haddock of Houston had tried PrEP off and on since 2015 but he jumped at the chance to participate in the lenacapavir study and continues with the twice-yearly shots as part of the research follow-up.
“Now I forget that I’m on PrEP because I don’t have to carry around a pill bottle,” said Haddock, who leads the Normal Anomaly Initiative, a nonprofit serving Black LGBTQ+ communities.
“Men, women, gay, straight – it really just kinds of expands the opportunity for prevention,” he added. Just remembering a clinic visit every six months “is a powerful tool versus constantly having to talk about, like, condoms, constantly making sure you’re taking your pill every day.”
Gilead said the U.S. list price, meaning before insurance, is $28,218 a year, which it called similar to some other PrEP options. The company said it anticipated insurance coverage but also has some financial assistance programs.
Most private insurers are supposed to cover PrEP options without a co-pay although the Supreme Court is considering a case that could overturn that requirement. Congress also is considering huge cuts to Medicaid. And while community health centers still are an option, the Trump administration has largely dismantled HIV prevention work at the Centers for Disease Control and Prevention that would normally
get the message to vulnerable populations who’d qualify for the shot, said Carl Schmid of the nonprofit HIV+Hepatitis Policy Institute.
Schmid worries the shot won’t meet its potential because “we’re basically pulling the rug out of HIV prevention and testing and outreach programs.”
Gilead also has applications pending for the twice-yearly shot in other countries. Last fall, the company signed agreements with six generic drug makers to produce low-cost versions of the shot for 120 poor countries mostly in Africa, Southeast Asia and the Caribbean. Gilead plans to make enough shots to supply 2 million people in those countries, at no profit, until the generics are available, said company senior vice president Dr. Jared Baeten.
Winnie Byanyima, executive director of UNAIDS, said in a statement the price is still too high. If it’s unaffordable, she said, “it will change nothing.”
And HIV experts worry the arrangements Gilead has made to reduce costs in some countries leave out middle-income countries like some in Latin America.
“Everyone in every country who’s at risk of HIV needs access to PrEP,” said Dr. Gordon Crofoot of Houston, who helped lead the study in men. “We need to get easier access to PrEP that’s highly effective like this is.”
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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
Trump's policies could undermine the fight to end America's HIV epidemic by
Melanie Evans
Original Link: https://www.wfyi.org/news/articles/trumps-policies-could-undermine-the-fight-to-end-americas-hiv-epidemic
President Trump, in his first term, urged Congress to spend more in the nation's decades-long fight against HIV and AIDS. "We have made incredible strides incredible," the president said to applause during his State of the Union address six years ago. "Together we will defeat AIDS in America and beyond."
In that speech, he set out one of the most ambitious health policy goals of his administration: End the HIV epidemic in the U.S. in 10 years.
That initiative may now stop five years early. President Trump is back in office with new priorities. The White House budget proposal would roll back next year's federal HIV prevention funding to levels not seen since around 1987. Much of that funding typically flows to local public health agencies and nonprofits to test for infections, monitor for outbreaks and promote prevention.
No money is flowing at the moment. The administration this month froze at least $460 million for grants to local public health and nonprofits that were scheduled to start June 1.
The president's reversal is paralyzing HIV prevention work nationwide, advocates, researchers and public health experts told Tradeoffs.
"Does this administration simply want HIV prevention activities to go away, and by extension, want additional HIV infections throughout America?" said Jeremiah Johnson, executive director of the advocacy group PrEP4All. "Because there's simply no explanation of what else this could possibly achieve."
How the U.S. funds HIV prevention (for now)
The Centers for Disease Control and Prevention is the federal agency that oversees HIV prevention. It has been spending about $1 billion a year on those activities, including roughly $220 million for Trump's first-term initiative
The White House is now asking Congress to strip nearly $800 million from that spending. City and state budgets would be squeezed by the loss of those funds, much of which is sent to cities and states to pay for epidemiologists to track infections, for free HIV tests and self-testing kits, and for various types of prevention outreach.
Andrew Nixon, spokesman for the Department of Health and Human Services, said HIV prevention continues to be a high priority for the administration, and critical activities will continue under the new Administration for Healthy America.
The U.S. spends far more on HIV and AIDS treatment largely through Medicare and Medicaid — than on HIV prevention, even before Trump's proposed cuts. Public health and infectious disease experts say the nation could save by investing more to stop infections, which costs about $500,000 over a lifetime to treat.
Trump's proposal would cut HIV prevention under the CDC by 75%, reducing spending to a level not seen since the U.S. launched its first AIDS public service announcement in the mid 1980s.
For anyone old enough to remember the early years of the HIV epidemic, prevention has come a long way. As it became clear the virus could spread by sex and contaminated needles, public health agencies recommended condoms and safe needle exchanges. It was, understandably, an imperfect defense.
"I went through this myself. You hear your whole adolescence and into young adulthood, the best way to not get HIV is to not have sex," said John Brooks, an epidemiologist and doctor who has spent his career fighting the virus. "Nobody's a saint."
An HIV and hepatitis C test read negative in the HOPE outreach van in Tulsa, Okla. Nick Oxford / Tradeoffs
It was, however, the best defense available for about a quarter of a century. That changed radically in 2012, when regulators approved a daily pill that can block an HIV infection. The treatment is known as PrEP, for pre-exposure prophylaxis.
Brooks, who retired last fall as medical director of the CDC's HIV prevention division, described PrEP's discovery with something like awe: "It was astonishing, the potency of this simple intervention."
Trump's big swing to end the HIV epidemic
PrEP is critical to Trump's initiative to end the epidemic by 2030.
By 2019, as the initiative launched, PrEP had been on the market for years, but had failed to take off. Getting more people on this medication is a key strategy to halting the epidemic.
It's also one of the biggest challenges for reaching the president's target. The costs involved in taking the medication, including occasional lab work, and the stigma that persists around HIV keep many from talking to doctors about a prescription, say advocates. Some doctors and pharmacies don't offer the drug, creating what are known as PrEP deserts.
Through last year, Congress has poured $2.3 billion into the president' initiative, including extra funding to HIV hotspots for PrEP advertising, outreach and screening.
That money is critical if the nation wants to bring the virus under control, said Brett Giroir, one of the first-term Trump health officials who helped get the effort started. But the administration's backing for the initiative's ambitious target was crucial, too, he said. "Money without leadership is nothing. You're just throwing it away."
PrEP use has increased nationwide, to roughly 30% of those who would benefit, up from 22% before the initiative got underway. But that's still short of the 50% target to meet the initiative's 2030 deadline for halting the epidemic. One analysis published this year by CDC researchers found no extra gains in PrEP use in places targeted by the initiative. But the authors cautioned that the pandemic disrupted the initiative's early work, so impact of programs may not be visible yet.
Threats of funding cuts have already stopped some HIV prevention efforts
In Tulsa, Okla., the nonprofit organization called Health Outreach Prevention Education, or HOPE, has made progress in boosting PrEP use, but its successes take time.
HOPE staffs clinics and mobile vans that bring HIV tests and promote PrEP across the city and nearby rural areas partially funded by the president's initiative and other HIV prevention grants from the CDC.
Brad Sullivan is one of HOPE's success stories. He had seen HOPE's outreach staff around Tulsa over the years, he said, and knew he was overdue for HIV testing and
PrEP. But it took his friends having a scare with a sexually transmitted infection to get him to finally talk to a HOPE staffer and start on PrEP.
Had HOPE's program not existed he might not have gotten tested, Sullivan told Tradeoffs. He would feel too vulnerable to have a conversation about HIV at his primary care clinic. Sullivan is gay and 53. He grew up in rural Oklahoma and attended Christian college before he came out.
"You live with that fear of rejection from loved ones," he said, "from friends, from people you may just be a casual acquaintance with."
He didn't feel that fear with HOPE. "You're going in there and you're talking with people that get it," Sullivan said.
Hana Fields, HOPE's outreach manager, said she hears 'no' often from people she talks with about PrEP, as she visits spots around the city.
Some tell her they are uninsured and fear they can't afford the treatment. Others have never heard of it. Many say they can't travel across town to HOPE's clinic for the exam and tests they'd need to start the medication.
Despite repeated "no's," Fields and her team keep showing up time after time, to get the word out on PrEP and to build trust. Sometimes, eventually, it works, she said. "If you are there enough in a person's life, you will catch them on the day that they're ready to start taking action."
Much of HOPE's federal funding is now up in the air. The Trump administration froze the HIV prevention grants from the CDC that were scheduled to start this month.
The HOPE program was counting on that money, and now Taryn Norman, HOPE's executive director, finds herself poring over the nonprofit's finances, trying to figure out how long their cash will last.
The worst case scenario, Norman said, would force HOPE to stop some of its work and lay off staff.
Oklahoma last week advised HOPE to limit HIV prevention spending to necessities, Norman said, until the federal government makes it clear when it will release CDC grant funding. Public health agencies elsewhere have taken more aggressive steps. The Arizona Department of Health Services told organizations it funds with CDC grants to stop their HIV prevention work, such as helping people get PrEP prescriptions.
If CDC funding eventually comes through, the state will try to pick up where it left off, the agency said in an email to Tradeoffs, adding "The longer the delay in funding lasts, the harder it will be for organizations to bring services back." Los Angeles County and North Carolina have also halted funding for local HIV prevention efforts.
Federal turmoil could squander investment, reverse gains
Threats of funding cuts are the latest in White House actions that, combined, would gut the nation's defenses against HIV, say public health leaders and HIV prevention advocates.
Mass layoffs at the Health and Human Services Department included HIV prevention teams at the CDC teams needed to do the analysis of HIV infections and PrEP use nationwide. Much of that work stopped with the layoffs, though the agency said this month it would rehire some people who do work on HIV and other sexually transmitted diseases.
Trump's HIV initiative also poured money into studies of how best to increase PrEP use among high-risk groups, including transgender women, Black women and gay and bisexual men.
But several of those studies abruptly lost funding when the President issued executive orders to eliminate equity initiatives and policies. For studies of LGBTQ+ health alone, the administration terminated about $800 million in research, according to a recent lawsuit.
Congressional Republicans, meanwhile, are pushing ahead with plans for new Medicaid enrollment rules that would remove millions from that safety-net health insurance program. Medicaid coverage is one factor associated with higher use of PrEP, studies find.
"Any hope of ever ending the HIV epidemic is very much tied to a functioning Medicaid program," said Amy Killelea, an assistant research professor at Georgetown University and public health law expert.
The upheaval also threatens to squander potential progress from a longer-lasting version of PrEP approved by the Food and Drug Administration this week.
The new drug, lenacapavir, is highly effective at stopping infection, as are existing drugs on the market. But other versions of PrEP must be taken daily or, at best, every two months, with schedules that have been hard for some people to maintain. A single dose of Lenacapavir protects against HIV infection for six months. Researchers' estimates suggest having this sort of less-demanding option available can further reduce infections
"It really does change things considerably by virtue of its long-acting effect," said Jim Kublin, a principal scientist at the Fred Hutchinson Cancer Center who is working to develop an HIV vaccine. But the powerful new drug option will need formidable outreach to reach enough people to make a difference, he said, or "its eventual impact will be far inferior to the initial enthusiasm we may have had."
Tradeoffs is an editorial partner of Side Effects Public Media. To learn more about Melanie Evan's reporting, you can listen to this podcast episode from Tradeoffs.
Tradeoffs is a nonprofit news organization that reports on health care's toughest choices. Sign up for their weekly newsletter to get Tradeoffs' latest stories in your inbox each Thursday morning.
Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. We partner with NPR stations across the Midwest and surrounding areas including KBIA and KCUR in Missouri, Iowa Public Radio, Ideastream in Ohio and WFPL in Kentucky.
If you’re a senior living with HIV in Ontario, Canada, here is a site and program designed to help you manage your finances: https://www.realizecanada.org/our-work/hiv-and-aging/financialempowerment-for-healthy-aging-with-hiv
I am always looking for voices that amplify HIV+ lives and one I was looking through posts shared on BlueSky and came across a video of a woman in the UK who gave a TEDx Talk about her years of living with HIV. It was so brilliant and poignant that I felt I needed to learn more about her. So, I actually wrote to her on the site and she actually responded. So, today I along with all of you reading this we are about to get to know and learn more about Emma Cole the "Positive Voice" of HIV.
JE: Hello Emma...thank you for taking the time to answer my message on BlueSky. Honestly, I didn't really believe that you would respond at all. It can be oH putting to have a strange drag queen in another country writing to you about a publication that you probably had not heard of. How are you today?
EC: Hello Jade, I was curious to get your message, and I immediately ‘googled’ you to check you were legit and discovered all the back issues of Poz Planet which were an amazing read – credit to you! I’m really well, it’s been a lovely few days in London as I’ve had my close friends visiting from Sydney, Australia so I’ve been catching up with them and playing being a tourist in my own city. Today I visited the UK AIDS Memorial Quilt that was on display at the Tate Modern art gallery which was an incredibly powerful and moving reminder of the past. So important that our collective history is never forgotten.
JE: So, I'm really curious to introduce you to our readers. Could you tell us a little about your background? Where are you originally from?
EC: I always feel like I don’t really come from anywhere because I was born in a British Military Hospital in Hanover, Germany as my father was in the British Army. We then moved between Germany and England for the first six years of my life. Sadly, when I was 6 years old my Dad died from a heart attack when he was just 34 years old. We were living in Germany at the time and a few months later, my mother, sisters and I moved back to England.
I spent most of my childhood in rural England in the county of Herefordshire – think green fields, sheep and cattle and not much else, but I never feel like I come from there. I left Herefordshire in the late 1980s to move to university to study, first in Hampshire and then to London. I originally intended just to spend a year in London but I never left! I’ve been living in Chelsea for 30 years now and it’s the first place that feels like home for me.
JE: Hopefully you have checked out our magazine and the format for these interviews. Here's where we ask about how long you have been HIV+ and what was your experience when receiving the news that you had tested positive?
EC: I tested positive on September 11th 1991 (a date that I can never forget!) so 2025 marks my 34th year of living with HIV. I was just 22 years old, recently graduated from university with a Bachelor of Arts degree in Social and Environmental Studies and was preparing for the beginning of my adult life outside of education.
I should probably explain why I got tested because as a young, white heterosexual woman I never considered that HIV would impact on my life; there was no messaging at that time that ever depicted someone like me to be at risk.
I had met Ian at a classical concert in London, and we had begun a sexual relationship after dating for a couple of months. My only concern at the time was an unplanned pregnancy, so I had insisted on condom use as I wasn’t taking any form of contraception; Ian readily agreed and I just
thought I had met the most perfect boyfriend, good looking, intelligent, responsible – he ticked all the boxes!
On one occasion a condom failed, and Ian became quite agitated and concerned; after what seemed like forever but was probably just minutes, he disclosed that he didn’t care about getting me pregnant but was worried because he was HIV positive. I was totally shell shocked because the very limited knowledge I had at the time about HIV was that positive people looked sick and ill, but he was seemingly fit and healthy.
I never considered myself at risk of contracting HIV from this one occasion, but a helpline advisor informed me there was a very small risk and “for peace of mind” I should consider an HIV test in 12 weeks’ time after the ‘window period’ for testing.
In 1991 there was just one ‘Same Day Testing’ service for HIV at St Bart’s Hospital in central London. I remember calling up the phone number to make the appointment, it was week 11 of my 12 week wait but I figured one week wouldn’t make a diHerence. I remember I had to have pretest counselling, the counsellor was very reassuring saying that it would be highly unlikely as I had no other risk factors, and I had become a blood donor just a week before I met Ian so I knew that I had been negative before meeting him.
I waited a few hours for the result; the counsellor then told me the test had come back positive, in fact they’d done the test twice because they wanted to make absolutely sure it wasn’t a false positive. The antibodies for HIV had been identified and I was HIV positive.
I don’t remember having any post-test counselling, I probably did but it’s no longer a memory I have. I was given several leaflets one of which included details of an organisation called Body Positive London which is where I headed within a couple of days of getting my positive result.
I will be forever thankful to the gay men I met there who took me under their wing and answered every question I threw at them about living with HIV. I was so fortunate to have access to Body Positive as they had a group called Positive Youth which was for anyone under 25 who had been diagnosed. Meeting other young people made such a huge diHerence as I had felt so isolated at first. There was a young man there who’d contracted HIV from contaminated blood when he was a child, and he gave me so much hope because I could see that he’d already lived many years with HIV which was a revelation to me.
You have to remember that back in 1991 there was no internet, I couldn’t look online to find other people living with HIV, there was no Google, You Tube, Tik Tok or Instagram to scroll through and realise you are not the only one, so joining the community at Positive Youth and Body Positive was a lifeline even though the number of women using the services at the time was incredibly small.
Eventually I helped establish the Body Positive Women and Families group which subsequently left the auspices of Body Positive to become Body and Soul; I was one of the founding members and a trustee of the original organisation and was very proud to have helped make that happen.
It would take many months of counselling for me to begin to come to terms with my new reality. The overwhelming fear in those early months was that I would get sick and die quickly; I even went ahead and planned my funeral, even buying the coHin (it sits in my living room as storage box for now)! I genuinely thought I was going to die because sadly less than two years after my diagnosis, Ian died in hospice care from an AIDS related illness and the memories of those last few weeks visiting him there will never leave me.
JE: I was diagnosed in 1990. It was definitely a diHerent world back then. Did you experience any discrimination because of your HIV status?
EC: I totally agree, being diagnosed in the early 1990s was a totally diHerent experience to what someone would go through today. I remember the first consultant I saw told me that if I was lucky I might live “8-10 years”; at 22 I suddenly had to face the prospect of maybe not even reaching my 30s!
I made a conscious decision that I would live openly as an HIV positive woman from the beginning, but I knew at that time there was a real risk of being treated diHerently and I may face discrimination or outright hostility.
Probably the hardest situation I had to face was when I went to tell my Mum what had happened. Initially I told her I was going to do some voluntary work at an AIDS charity; I just wanted to test the waters to see if she was supportive of that decision. Her response was “Why on earth would you want to bother with people like that, they’ve got everything they deserve”!!
That was a real shock and made me realise I wasn’t going to be able to share my diagnosis with her face to face. Eventually I wrote her a letter to tell her what had happened. She accused me of “sleeping with every man at university ”; told me I should never have graduated if I was going to be dead in a few months; and I was never to have sex again because if I became pregnant, I would pass it on to an innocent baby!
We eventually rebuilt some semblance of a mother/daughter relationship but there was always an underlying tone of not quite accepting me as before; I don’t remember hugs or kisses goodbye after my disclosure. Years later when I was asked to be in a TV documentary about positive women, my Mum said I would embarrass the family, and if I went ahead and appeared in the programme I would never hear from her again – that was 24 years ago – I’ve had no contact with Mum ever since.
I experienced discrimination from healthcare workers when I shared my status. I was in hospital a couple of years after being diagnosed for an operation totally unrelated to HIV. I chose to share my status and was put at the bottom of the operating list for that day; I had ‘HIV+’ written in large RED letters on the front cover of my notes – which were left on top of the nurses’ station for anyone to see. I remember a nurse coming to take bloods, when she read my notes, she told me she’d comeback shortly and soon arrived covered head to toe in protective clothing!
I was once asked by a school nurse if I was a lesbian because she thought ‘only gays got HIV’. In another school, a member of staH, who on finding out I was HIV positive, asked if it was safe because he’d shook my hand! In another school, I was told I was “evil” and “shouldn’t be allowed near young people”.
That’s just a flavour of some of the situations I’ve had to deal with, so yes, I have experienced discrimination. Much of those experiences fuelled my desire to try and educate as many people as possible about HIV because I believe a lot of those attitudes came from ignorance and misinformation that people believed about HIV.
JE: It takes a strong person with a lot of courage to walk in their truth. I'm curious to learn what was the deciding factor in coming out public?
EC: You’ll laugh at this but shortly after I’d been diagnosed, I was sat watching a daytime TV chat show and at the end they said ‘and tomorrow we’re discussing that heterosexuals don’t get HIV’ –
I just saw red…I phoned up and said this was totally wrong, I’d just been diagnosed. The TV producer immediately asked if I’d be willing to be live on the programme and I just said yes. I didn’t give a moment’s thought to the implications of outing myself on national TV as a woman with HIV.
I also strongly believed that because I’d never thought of myself as someone who would be at risk of contracting HIV then I had to put my head above the parapet and say look HIV doesn’t discriminate, anyone sexually active at that time had to be aware of the potential risks.
Within 6 months of being diagnosed I’d taken on a part-time job at Positively Women as well as volunteering at Body Positive. I volunteered on the helpline at Body Positive for about 8 years, this was staHed entirely by people living with HIV; I threw myself into what I called the ‘HIV world’ and this grew my confidence in talking openly about living with my own diagnosis.
I also took on another part-time job working in local government where I was fortunate to have a line manager who was a gay man living with HIV who I’d known from Body Positive. That allowed me to be open about my positive status with colleagues working outside the HIV sector
JE: And how did you get into public speaking?
EC: If someone had told me when I was younger that I would end up speaking in public on such a personal matter I would have laughed long and hard as I was such a shy teenager, I’m a twin and I was the quiet one, while my sister was much more outgoing and confident.
Both through my work at Positively Women (now Positively UK) and volunteering at Body Positive I had access to media training for anyone willing to talk publicly about living with HIV. As I’d already thrown myself in at the deep end by going on daytime television with no training I thought it would be beneficial.
At Positive Youth, schools would often approach the co - ordinator asking for a volunteer to go and speak to students; in the early 1990s the UK schools were still a little nervous of having young gay men speak due to the hangover from Section 28.
Section 28 was a part of the Local Government Act 1988, which stated that local authorities in England, Scotland and Wales "shall not intentionally promote homosexuality or publish material
with the intention of promoting homosexuality" or "promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship"
So as young heterosexual woman I was often the one chosen to do the school talks. Through one speaking engagement at a church youth group in the early 1990s I got to meet the incredible Sister Dorothy Bell who was a Catholic nun doing educational work on HIV in catholic schools. We ended up joining forces and the two of us would do a double-act; it led to a wonderful friendship that lasted right up until her death in 2019.
In the mid-1990s, my HIV consultant at the time also asked if I would be willing to sit on a Patient Panel for training courses for GPs, nurses, doctors and any healthcare workers who wanted to know more about HIV. The course had only ever had gay men on the panel so I jumped at the chance to show a diHerent face of HIV. From 1993, I must have sat on over 150 Patient Panels, providing an insight from a female perspective, for many participants I was the first positive woman they had ever met!
After 10 years working in local government I was made redundant as my post was going to be increased to a full-time position and I wasn’t well enough to take that on board at the time. I was fortunate to get some consultancy work setting up the pilot HIV self-management project that became known as Living Well.
Then in 2002 I set up my own consultancy, Positive Voice to deliver HIV education to schools, healthcare organisations and businesses, building on the work I had already done in the previous decade as ad-hoc work. In my first year I delivered 30 talks, in recent years I can do anything from 80-120 talks in a year, reaching approximately 15,000-20,000 people with up to date knowledge about HIV through sharing my life experiences since diagnosis in 1991 to life as a long-term survivor today.
Because I’m a bit obsessed with numbers, every talk has been recorded on a spreadsheet and I estimate that about 370,000 pupils and staH have heard my Positive Voice talk to date. I even meet teachers now who heard the talk when they were pupils and still remember me.
As I built up my public profile I was then approached to be in my first documentary for BBC television here in the UK; that was a programme called ‘Positive Women’, and featured me and two other women with HIV and was broadcast in 2001; I’ve subsequently appeared in another BBC series called ‘AIDS-the Unheard Tapes’ and another documentary for Sky Television called ‘Positive’.
JE: If someone would like to book you or contact you like I did, what would be the best way to do so?
EC: I’ve got my Positive Voice website https://www.positivevoice- emmacole.co.uk/
Or email direct at positivevoicehiv@gmail.com or on social media @emmacolehiv on Instagram, Threads or Blue Sky. I am still on Twitter (X) but I no longer post there.
I can deliver my Positive Voice talk in person or via Teams/Zoom so if any international schools would like to hear from me that can be arranged. School bookings tend to be made months in advance so my diary for the next academic year from September already has 45 school talks booked in.
JE: Well, I cannot thank you enough for sharing your story. Unfortunately it has been very diHicult to get female features for this column. So, I am always so appreciative when we are able to tell those stories. Before I let you go...is there anything else you'd like to share?
EC: Well firstly thank you Jade for allowing me to share my story, as a positive woman and longterm survivor, I often feel invisible today in much of the discussions around HIV, so this has been a wonderful opportunity to reach a wider audience.
I’d like readers to know that relationships between an HIV positive person and someone who is negative can and do work! For many years after Ian died, I didn’t think I would ever meet someone to have a long-term relationship with.
BUT it happened for me and after 10 years with my negative partner we made it oHicial and had a civil partnership in January this year. For me, the U=U message transformed the way I felt about myself and sexual intimacy, that weight of fear that I used to have about transmitting the virus to someone else no longer exists which means lots and lots of happy, fun times!
Never underestimate what you can achieve after an HIV diagnosis – I even managed to run the London Marathon in my 26th year of being positive; now after 34 years of living with HIV I have a life I never expected to have and for that I will eternally grateful.
POZHET site link: https://pozhet.org.au
EDITOR’S NOTE: I went looking for sites that specifically help our heterosexual HIV+ brothers and sisters and found this great site in Australia. You don’t have to live there to learn or get information. Here’s some other sites that might help or lead you in the right direction: https://www.hiv.gov/hiv-basics/overview/making-a- diHerence/supporting-someone-living-withhiv
https://www.canada.ca/en/public-health/services/publications/diseases- conditions/hivcanada-people-living-with-hiv-new-infections-2020.html
Listen to the mix here: https://www.mixcloud.com/djrelentlessny/ear-candy-july-2025 Download your free video of this mix here: https://mega.nz/file/Br0m0JII#XeluzlDCSrBJMFhd7Lz5Xj2hPmGPVhK_2mcFYuATJq4
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It is o'icially SUMMER and it’s time to find out what our soundscape is going to be for the next few months. I’m still kinda buzzing from Pride Month and feeling still quite prideful about our LGBT Artists. So, there are nine featured in this month’s mix. We have a little something for everyone in this one…covers, classics remixed and definitely some new EAR CANDY. Hopefully my mix will help you get through your day…or at least escape the world for a little while.
Alright…let get to finding out who each artist is and why I chose these songs…
With Pride still in my heart I decided to start with one of the best Gay Anthems revisited by TONY winner J Harrison Ghee. When Gloria Gaynor did the Disco version of “I Am What I Am” from the Broadway musical “La Cage aux Folles” back in the 80s, it quickly became a staple in gay bars. It was a declaration that we needed as the AIDS epidemic began, and the public began to run and blame us. So, having J cover the song has given it a new meaning for the LGBTQ2+ Community which makes it more inclusive. The video is
brilliant and I highly recommend my fellow DJs play this version for today’s young people.
I think it’s been about five years since I found Youngr and his cover of N.E.R.D.’s “Lap Dance” and I have been a fan ever since. He does originals but his interpretations of others’ songs really make me happy. Probably because he truly is a DJ and knows what we need for mixing. So, I was thrilled when I heard he had covered “Smalltown Boy” by Bronski Beat. He did it in a concert in London as a really High Energy track to hype the crowd. I actually slowed it down to 128 BPMs to make it work for this mix. It was important to continue with the Gay Anthems and that’s why this one was chosen.
And since we’re digging up some classics, our third selection is the BVRNOUT Remix of “Go Your Own Way” by Fleetwood Mac. I know some of our younger readers are probably saying “Why does he always throw these old tracks in?” Well…how else would you learn about where your Pop Hits of today came from. When you study music, they always want you to learn about the masters of yesterday. This is where song writing comes from…your elders. You didn’t invent what’s happening in entertainment today. You’re just adding to it or repackaging it. This is a classic song for a reason and it’s nice to have a version that can be mixed into and out of.
One of my good friends is the infamous Lady Bunny (the originator of the drag festival WIGSTOCK, recording artist and comedian). She was recently here in Toronto with her latest show, “Don’t Bring The Kids”. It was great to see her weave her magic in front of an audience and to spend some time with her the next day. My husband and I always have a good time when we all hang out. And the funny thing is, she didn’t even mention her new
single with Petter Wallenberg & Rainbow Riots called “My Love (Is The Way It’s Supposed To Be)”. It’s a new Gay Anthem and battle cry for those who are feeling attacked by the Conservative Movement that seems to be spreading all over the world. As cliché as it may sound –“We’re here, we’re queer – get used to it! We ain’t going nowhere!”
Our fifth selection has made my husband so happy! He’s been watching me work on this project for a while. It’s because it took so long for this track to happen. And while I try not to toot my own horn that often, I have to tell you about this one! Years ago, I was working with producer Bryan Greenwood who had some vocals by Juno winner Simone Denny laying around. As my alter- ego Jade Elektra we wrote and produced a track called “Realness”. When I contacted Simone’s management they were asking for a large sum of money to use those vocals. Child…I’m a poor black child from da ghetto! I ain’t got and ain’t gon’ ever have a large sum of money!. So, needless to say…that track never saw the light of day. Fastfoward a decade later, Simone and I are now friends and finally sat down to write and record a song together last fall. And now I am proud to announce the release of “Let’s Call It Love” by Simone Denny & Erik Elias featuring Jade Elektra on Matt Moss’ Vidon Music label.
So far, we have mentioned J Harrison Ghee, Lady Bunny, Rainbow Riots, Erik Elias and myself (Jade Elektra)…all LGBTQ2+ artists. We’ve got four more to go. And to continue name dropping, our sixth track is “When We Kiss” by Olly Alexander. If you don’t recognize the name, he was the lead singer of the UK group Years & Years. I loved him
in the group and fell in love with him in the UK series “It’s A Sin” as Ritchie Tozer. He reminds me of the kind of boys I was into when I was in college and going through my Alternative phase. His new video is kinda sexy and is a little unapologetic. I like that!
And speaking of Alternatively Sexy Benson Boone is kinda filling in that void. His quirky bellbottom outfits remind me of the 70s variety shows and his vocals bring me back to Leo Sawyer. After his unforgettable flip on the VMAs, he’s become a sex symbol. And he’s bringing it for his new single, “Mystical Magical”.
Last month during Pride I did a lot of work for our Senior LGBT Community…DJ-ing, performing and hosting a new game night. And because I am trying to entertain them, I have been digging up a lot of classic tracks. So, I was really impressed when I heard the Brain Lucas & Suki Soul cover of “Back Together Again” (originally by Roberta Flack & Donny Hathaway). I always wished there was a House remix for this one. Now, don’t get me wrong. The vocals don’t compare to the original but bless their hearts for tryin’.
But the real surprise was our ninth track…the Brothas & Sistas Remix of “Brick House” by The Commodores. For years I had been playing this bootleg House version that was just okay. But this is a real remix, and it has worked the original production in just right!
Now, even though she was a total diva when I met her and I kinda didn’t care for her as much afterwards, I am excited about the TMC Club Mix of “Type Dangerous” by Mariah Carey. She hasn’t don’t a Club Banga in a while. The original version will do well on Pop radio but this remix rings in the 90s House revival. I’ve grown really tired of all these
remixes above 128 BPMs. We’re not teaching an aerobics class! We wanna dance…not have a heart attack! Everything these days seems to be going harder and faster. I hate it! We had a great time dancing to tracks between 110 and 125 BPMs. Let’s go back to that!
I haven’t heard much from Maroon 5 in a while. So, I was surprised when I read that they had teamed up with K-Pop princess, Lisa for a song called “Priceless”. The original is around 95 BPMs but the Funkjoy Remix is around 115. I sped it up to 120 to make it work as our eleventh selection. It’s cute. I don’t think it’s gonna do any major damage on the charts, but it will be great as filler.
I’m flipping channels the other day and heard that Tyla is hosting the Nickelodeon Kids’ Choice Awards. Um…what? The girl who won a Grammy for asking someone to make her like “Water”? Oh..okay! I mean…she does still look like a teenager, but she wouldn’t have even hit my radar for such a task. But I guess if Rihanna can voice Smurfette, I guess her contribution to the soundtrack for The Smurfs soundtrack qualifies her.
Anyway…there’s the Didot Afro House Mix of “Bliss” by her. It’s cute but unfortunately all of her tracks are beginning to sound the same to me. If she really wants to break the U.S. market she’s gonna have to expand her genres. I see she has a song out with Lisa called “When I’m With You”. Maybe that will help…
Our thirteenth selection is “Tatata” by Burna Boy ft Travis Scott. Now…I gotta tell ya – I was looking through my Facebook feed and saw a photo of Timothee Chalamet & Kylie Jenner backstage with my friend Bianca Leigh at her show in NYC. I don’t keep up with all of the Kardashians…so I had no idea that she and Travis had broken up. When I did this mix the Afrobeat ReDrum was the only thing I had to work with but there is now a Hills Remix. I like this one. I sorta can take or leave most Burna Boy tracks but this one is something I would play.
Now, another British artist that always hits my radar is the lovely Estelle who is back with a new album. And her latest single “Let It Drop” features gay artist Durand Bernarr I feel like her “New Direction” is leaning towards that mix of R&B Dance with a touch of Disco. Sure wish there was a video for this one.
Our fifteenth track is the Cosmic Dawn Club Mix of “Busy Woman” by Sabrina Carpenter. Last year this time you couldn’t get away from her “Espresso” but I kinda have the feeling that her formula has run its course. For me…all her songs are beginning to sound the same. There are no Next-Madonnas or Next-Britneys because the internet and social media has destroyed any chances of being the “next” anything! You can’t hold the spotlight long enough to have longevity.
Now…I’m pretty sure Coco Jumbo is not the vocalist on Division 4’s cover of “Young Hearts Run Free” but she is the one featured lip syncing the song in the music video. Is it better than the original version by Candi Staton? Absolutely not! But is it a good tool to introduce the song to a younger and newer audience? Absolutely!
Our seventeenth track is “Mary Poppins” by bbno$. Alright…I’m gonna say it! Alexander Leon Gumuchian (that’s his real name) can get it! Yes, he can be cringe sometimes and he’s not as tall as I would like him to be, but damn this muthafucka is FINE! Like Bad Bunny…he can do no wrong right now. I love his flow and he continues to push the bisexual vibe. I can live with that.
As soon as Lady GaGa performed at Coachella there were a slew of videos being traded of the show. So, it was no surprise that a video edit would pop up for “Zombie Boy ”. I’m happy to see that she has tapped back into the image that got her noticed. And I am looking forward to her on the Netflix series “Wednesday” . I believe there are a few short clips in this music video.
When I’m programming the EAR CANDY series, I am always remembering to try to include all kinds of genre(s) and artists that can fit in a mixable format. So, it is not unusual to find a Pop Rock hit in my journey to introducing tracks and remixes to my audience.
And if you are a follower of this series, it shouldn’t be a surprise that I included Ligotti Stagecoach Mixshow Edit of “Iris 2025” by The Goo Goo Dolls. I remember hearing this on the radio here and there but never played it for anything. Well, now I have a version that I can and will play if anyone requests it.
While there are actual remixes of the original song “Linger ” by The Cranberries, there is a new cover by Jolyon Petch ft Tanya George. The Moomba Bros Remix is functional. I probably will prefer playing a remix of the original but this will do in pinch if needed.
As promised in our last issue, I closed out this month’s mix with an exclusive remix of a Colton Ford track. The video for “All My Love” is one of the sexiest collections of images that I’ve ever seen by a gay recording artist. It’s simple and just beautiful. If you have any Daddy thoughts, Colton serves the look so well. It literally inspired me to remix this ballad into a Relentlessly Touched Vocal. 2025 has seen the loss of several gay porn icons so far…Darren Stone (32), Tim Kruger (44) and even though he left the business a while ago –Colton Ford (62). He was a lovely man and a great vocalist. Rest in peace…all of you.
