Breaking down HIV exclusions in cancer clinical trials

As an eligibility barrier cracks, a lung cancer patient gets a new lease on life

illustration of patient opening door to clinical trials

For reasons that date back to the earliest days of the AIDS epidemic, HIV-positive people with cancer have often been excluded from cancer clinical trials. Now, that may be changing.

On Sunday, at the annual meeting of the American Society of Clinical Oncology, the nation’s top cancer doctors learned the results of a new study led by physicians at Fred Hutchinson Cancer Research Center in Seattle. It showed that patients with HIV and one of a variety of potentially deadly cancers could be safely treated with the immunotherapy drug pembrolizumab, also known by its brand name, KEYTRUDA®.

Dr. Tom Uldrick

Dr. Tom Uldrick, deputy head of Global Oncology at Fred Hutch, is an expert in HIV-associated malignancies and lead author of the new study published in JAMA Oncology.

Photo by Robert Hood / Fred Hutch News Service

During an ASCO presentation concurrent with the release of the study in JAMA Oncology, Hutch researcher and lead author Dr. Tom Uldrick said that in nearly all cases it was safe to use the drug in patients with cancer and HIV. The “adverse events profile,” a measure of the safety of the drug in the study, was not substantially different from prior studies that excluded such patients. The results, study authors said, are likely applicable to five similar drugs that block receptors known as PD-1 or PD-L1 on the surface of T cells.

“Our conclusion is that anti-PD-1 therapy is appropriate for cancer patients with well-controlled HIV, and that patients with HIV and cancer can be treated with the drug and should be included in future immunotherapy studies,” Uldrick said in an interview prior to the conference.

One participant’s story

Although the primary purpose of the study was to evaluate safety, it also provided a snapshot of the anti-cancer activity of the drug on these patients. For one of those patients, the trial turned out to be a lifesaver.

Joe Hall, 56, received his first infusion of KEYTRUDA in April 2015 at the National Institutes of Health Clinical Center. He had an aggressive lung cancer that had swiftly come back despite treatment. He has also been HIV-positive since 1989. For the Fort Myers, Florida, resident, the decision to participate was straightforward: “There wasn’t even a hesitation to sign up,” Hall said. “The options for me, they were bleak.”

Although he can’t say for sure, he thinks he felt his immune system start to wake up that very same day — like he was fighting off a cold.

About two months later, he and his husband, Jeff, sat down with one of the study doctors at the NIH. The doctor put two scans up on her screen: the before and the after.

As they surveyed the remnants of his tumors — “They looked like they were exploding into cotton candy,” Hall said — he and his husband started to cry with surprise and relief.

A middle-aged man in a bow tie sits in a chair in a hospital room, facing the camera with his fist raised in salute. The raised arm has bandages and a hospital ID bracelet. An IV bag and other hospital equipment are in the background.

Joe Hall, who had advanced lung cancer, received his final infusion of KEYTRUDA on the trial at the NIH Clinical Center in Bethesda, Maryland, on April 25, 2018.

Photo courtesy of Joe Hall

“I didn’t have any idea what to expect,” Hall said. “The best I’d expected was to keep it in check.”

Today, Hall’s doctors consider him a “complete responder” — that is, they do not see any evidence of tumors. While continuing his regular KEYTRUDA infusions, he is back to his regular life. He works long hours at the business where he is a partner. And, he points out with pride, he can still hit the high tenor notes in his church choir, even with only one lung.

Hall’s case is not typical: He is the only patient on the trial who had a complete response. Yet it is “reassuring” to see such an outcome in an HIV-positive person with lung cancer, as is sometimes seen in other patients with this cancer, said Uldrick, who cared for Hall on the trial.

Hall says he hopes his story offers hope to people facing advanced cancers — and that it helps educate doctors that HIV-positive cancer patients like him might be candidates for drugs like KEYTRUDA.

“The word needs to get out,” he said.

Addressing cancer in people with HIV

The study findings strengthen the case for opening the door to cancer clinical trials for people with HIV, a door that has begun to crack open. The National Cancer Institute has encouraged inclusion of HIV-infected patients on clinical trials since  2008, and the Food and Drug Administration in March circulated for comment a draft of non-binding guidelinescalling for appropriate inclusion of people with HIV, hepatitis B or hepatitis C in cancer clinical trials. This is the first of two NCI-sponsored trials specifically testing whether a class of cancer immunotherapy drugs called checkpoint inhibitors is safe in patients with HIV.

“Exclusion of people with HIV in clinical trials is a longstanding problem that grew out of the poor outcomes of AIDS patients with cancer, before there were effective antiviral therapies for HIV,” Uldrick said. In prior research, Uldrick surveyed 46 recent clinical trials that led to the approval of cancer drugs, and he found 30 contained explicit exclusions for patients with HIV, and nine others where an exclusion was implied.

The 30-patient trial studied KEYTRUDA, an anti-PD-1 therapy. Keytruda is manufactured by Merck, which provided the study drug to the trial sponsor, the NCI. HIV-positive patients with different cancers that might respond to the drug were included in the trial. In addition to lung cancer, other cancers treated were Kaposi sarcoma, or KS; non-Hodgkin lymphoma; liver cancer; anal cancer and advanced squamous cell skin cancer.

The study was conducted at seven different cancer centers across the United States, including the NCI’s HIV and AIDS Malignancy Branch in Bethesda, Maryland.

Safety issues addressed in the trial include whether the known side effects of the drug, such as gastrointestinal distress and skin rash, were more problematic in HIV patients. The researchers were also watching for unanticipated disturbances in their immune system, such as an unhealthy or uncontrolled surge in T cells. “Many cancer researchers just assumed that checkpoint inhibitor therapy, which relies on patients’ T cells to fight cancer, would not be effective in HIV-infected individuals,” noted Dr. Robert Yarchoan, chief of NCI’s HIV and AIDS Malignancy Branch. The trial allayed those worries.

Dr. Mac Cheever

Hutch immunotherapy scientist Dr. Mac Cheever is director of the Cancer Immunotherapy Trials Network and senior author of the study.

Photo by Robert Hood / Fred Hutch News Service

Another concern was whether the drug might unmask an underlying opportunistic infection, and here the study encountered an unexpected problem. One participant in the trial, enrolled for the treatment of KS, died of a noncancerous condition involving KSHV, the virus that causes KS, and overproduction of certain white blood cells. Although a link between the patient’s death and use of the drug is unclear, the study authors recommend that patients with HIV who have high levels of KSHV and symptoms of a condition known as multicentric Castleman disease — which is also linked to the virus and affects white blood cells — be tested before considering the cancer drug.

Opening the door to trials

HIV patient advocates and their oncologists are accustomed to the roller coaster of new drug trials and managing unexpected side effects, which can occur in any clinical trial. They have been urging the NCI and drug companies to open cancer clinical trials to people who have HIV ever since it became clear in the mid-1990s that these patients can live otherwise normal lives by taking the antiviral drugs.

“There was a time when there was a reason for exclusions, and that time is over,” said Jeff Taylor, a California AIDS activist and founding director of the HIV & Aging Research Project – Palm Springs.

At the start of the AIDS epidemic, when patients’ immune systems were devastated by the uncontrolled virus, toxic rounds of chemotherapy or radiation only added to the suffering. While the first antiviral drug combinations that emerged in the 1990s saved lives, they sometimes cross-reacted dangerously with cancer medications. But Taylor said that management of side effects has vastly improved since, and there are now nearly 30 drugs available to HIV patients.

Fred Hutch immunotherapy researcher Dr. Mac Cheever is director of the NCI-funded Cancer Immunotherapy Trials Network, which carried out the trial, and he is senior author of the JAMA Oncology paper. In his view, the exclusion from cancer trials of any patient with HIV is an anachronism and serves no purpose.

“If you read most protocols, they exclude patients with an active viral disease. HIV is an active viral disease. That might imply there was thought behind the exclusion, but I think it was just historically due to caution and a standard part of protocols,” he said.

Cheever said the routine, blanket exclusion from cancer clinical trials of cancer patients with HIV is also rooted in fear that if anything goes wrong, it could jeopardize a company’s chance of winning FDA approval for a new drug.

“Companies don’t want to take a chance on their drug not working well or having more toxic events, until they get approval,” Cheever said. “So, they are afraid and hesitant to include patients in a clinical trial. It might have been a rational decision, but it’s very difficult on patients who have cancers and HIV.”

There are no legal constraints on doctors prescribing a drug to an HIV-positive cancer patient once it is approved by the FDA. The problem caused by exclusions in clinical trials — for both the physician and the patient — is the lack of access to potentially beneficial therapies during the long period of testing, and a lack of data on which to base a decision to use the drug once it wins approval.

Ironically, one of the most difficult problems in clinical research is accruing enough patient volunteers to test a new drug. For those who have dire cancer diagnoses and are failing with approved therapies, participation in a clinical trial may be their only remaining option.

Uldrick noted that his own research showed it takes a median of 6.8 years for a successful drug to move from early clinical trials to FDA approval. During that time, only trial participants have that chance to try out unproven therapies well before they are available in the marketplace. It is an opportunity, of course, only if patients are allowed inside the door.

The study in patients with HIV and cancer was dedicated to Dr. Holbrook Kohrt, a Stanford  University clinical researcher who suggested the study and helped design the trial. As a youngster, Kohrt was diagnosed with hemophilia and attended camps for kids with the condition. Most of his camp friends died of AIDS complications after they were infected with HIV from tainted blood products. Kohrt was fortunate to be spared of HIV infection himself, and he built his career on the study of cancer and the immune system. Sadly, he passed away at the age of 38 from complications of hemophilia on Feb. 16, 2016, just two months before the first patients were enrolled in the trial.


Fred Lee’s Social Network: The return of Art for Life

Fred Lee’s weekly look at the movers and shakers of Vancouver

ART RETURNS: After a four-year hiatus, Art for Life returned. Vancouver Friends for Life’s marquee event for 21 years, the event engaged the local arts community — artists, galleries, and private collectors — to donate works to one of the foremost charity art auctions in Vanhattan. During its run, Art for Life raised an impressive $3 million to support the society’s efforts to better the lives of individuals suffering from life-threatening illnesses through complementary health services, counselling, and meal programs.

Friends for Life started in the 1990s helping people with HIV/AIDS and opened its doors at the Diamond Centre for Living in the city’s West End. But as medical advances improved treatment and life expectancy of people living with the disease, revenues for the society began to declined. Over the years, the organization faced challenges in the areas of staffing, fundraising, and program delivery and for a period of time suspended operations.

In partnership with the Dr. Peter AIDS Foundation, Art for Life was resurrected. Leading the remount was executive directors Jesse Brown from Friends for Life and Dr. Peter AIDS Foundation’s Scott Elliott. Hundreds packed The Permanent Building to imbibe in great food and drink and bid on 44 works of art for sale in the silent and live auction. While many did not meet or exceed the donated pieces estimated values, collectively more than $185,000 was reportedly raised with plans already underway to bring the event back for 2020.

Among the artists who gave of their time and talent: Dana Claxton, Attila Lukacs, Paul Mathieu, Christian Nicolay, Paul Wong, John Ferrie, Shannon Belkin and Angela Grossman.

“It has been a wonderful experience reconnecting with the artist community on this cherished event. Their excitement for the return of Art For Life translated into immense generosity and fun,” said Kate Lade, Director of Development at the Dr. Peter AIDS Foundation.

Dr. Peter AIDS Foundation board member Brenda Isherwood and Dr Peter Centre registered nurse Jennifer Bibby saw the Art for Life auction raise $185,000 to support individuals living with life-threatening illnesses. Photo: Fred Lee.FRED LEE / PNG

Painters Jay Senetchko and Christian Nicolay were among 44 artists that contributed works to the charity auction. Photo: Fred Lee. FRED LEE / PNG

Architect Joel Smith and his husband Darcy Greiner were among art patrons that filled the Permanent for the remount of Art for Life. Photo: Fred Lee.  Archive] FRED LEE / PNG

Vancouver Heritage Awards

PRESERVING HISTORY: Yours truly along with city councillor Colleen Hardwick served as master of ceremonies at the 2019 City of Vancouver Heritage Awards. Heritage preservation was front and centre as projects and special achievements were honoured at the awards presentation staged at the refurbished Permanent Loan and Bank Building on West Pender Street in Vancouver. Individuals, architects, engineers and developers were lauded for their outstanding work preserving and documenting Vancouver’s history.

Held every two years, the awards are given in recognition of individuals and groups involved in protecting and promoting heritage within the city. In total, 21 recipients were recognized this year in three categories: honour, merit, and recognition.

Among the projects receiving accolades: the restoration of structural and design elements of the Burrard Street Bridge; seismic upgrading and exterior rehabilitation of Strathcona Elementary School, and the relocation and rehabilitation of The Dorothies, twin Tudor homes built in 1931 that were plucked from their Kerrisdale foundations and moved several blocks up the street.

Carol Lee’s Chinatown barbecue restaurant was also honoured. Bringing Hong Kong-style barbecue back to Chinatown, Lee’s effort was praised for translating intangible cultural values into a physical setting with economic benefits.

After seeing the gradual shuttering of once-beloved restaurants in the historic neighbourhood, Lee — daughter of famed developer Bob Lee — stepped up, investing money and energy to bring back some of the neighbourhood’s charm and businesses.

Chinatown barbecue is one of three Chinese restaurants the UBC and Harvard grad plans to open, as well as a 230-unit social housing project on Hastings Street.

Bringing awareness to an earlier time in the city’s history, Danny Filippone’s Penthouse Nightclub and Carol Lee’s Chinatown BBQ Restaurant were singled out for a Vancouver Heritage Award. Photo: Fred Lee. FRED LEE /PNG

Iredale Architecture’s James Emery and heritage advocate Donald Luxton of Luxton and Associates picked up a Heritage Award of Honour for their thoughtful restoration of the iconic Burrard Street Bridge. Photo: Fred Lee.FRED LEE / PNG

Event producer and heritage consultant Elana Zysblat congratulated Formwerks President Lyle Richards on the firm’s winning work rehabilitating the Macken Residence on West 15th Avenue. Photo: Fred Lee.

Vancouver Chinatown Foundation Spring Banquet

STORIES FROM CHINATOWN: Weeks later, Lee would front her third annual Chinatown Foundation Spring Banquet. To illustrate the Chinese Canadian journey the Chinatown Storytelling Centre would be the project of focus at this year’s community friend-raiser. Scheduled to open this fall, the Pender Street gallery will illustrate the arduous path of Chinese immigrants to Canadian citizenship and the intersections of Chinatown with other communities.

Presented by Vancity, and chaired by Bill Yee and Maggie Ip, two Vancouverites who have also contributed significantly to Chinatown’s history, nearly 700 guests — young and old — packed the Floata Restaurant to enjoy a ten-course Chinese dinner and support Lee’s crusade to revitalize the neighbourhood and preserve its cultural heritage. They would add to the millions Lee has already drummed up from her two fundraisers a year to support the foundation’s work.

Leading the storytelling effort is Wallace Chung, another prominent figure in the Chinese community. A lifelong passion for Chinese Canadian history, Chung has donated more than 25,000 books and printed materials and 1,750 artifacts from an extraordinary private collection reflecting his personal fascination with the CPR and its fleet of steamships to the UBC Library.

Chung is backed by an impressive advisory board that includes Lieutenant-Governor Janet Austin, SFU Chancellor Anne Giardini, UBC Ambassador Wendy Yip, former Emily Carr University president Rob Burnett, VGH UBC Hospital Thoracic surgeon Dr. John Yee and Banff Centre vice-president Howard Jang.

“From stories of entrepreneurship like Moderize Tailor, where Bill Wong once tailored suits for Sean Connery to accomplishments by barrier breakers such as Douglas Jung, a Second World War veteran and the first visible minority to be elected to the Canadian Parliament, it was through the unwavering tenacity of Chinese Canadians that Vancouver’s Chinatown became an epicentre of both social change and cultural preservation,” says Lee.

“These stories of hope and resilience need to be shared to acknowledge the value of inclusivity and diversity and to inspire gratitude, courage and strength for generations to come.”

Community leaders Wallace Chung and Maggie Ip steered the Vancouver Chinatown Foundation friend-raiser at Floata Restaurant. Photo: Fred Lee. FRED LEE / PNG

Community builder Susan Chow emceed Carol Lee’s Vancouver Chinatown Spring Banquet. Some 700 guests convened to support Lee’s efforts to revitalize the neighbourhood and preserve its cultural heritage.Photo: Fred Lee.FRED LEE / PNG

Helping to realize the Chinatown Storytelling Centre were Adele Chan, Lillian Hum, and Shirley Chan. Photo: Fred Lee. FRED LEE / PNG

Stephen and Grace Kwok’s Anson Realty was among a dozen firms that stepped up to support the efforts of the Vancouver Chinatown Foundation. Photo: Fred Lee.



‘5B’ nurses: the untold inspirational story of the lost AIDS generation

NEW YORK, NEW YORK – APRIL 30: Julianne Moore appears at the 2019 Verizon Media NewFront on April 30, 2019 in New York City presenting the AIDS documentary ‘5B.’ (Photo by Noam Galai/Getty Images for Verizon Media)

This June, LGBT people around the world are commemorating the 50th anniversary of the Stonewall Rebellion that galvanized the steady march toward full equality and LGBT civil rights. Stories are being told about the marginalized gay men people of color, lesbians, and trans folk who’d been harassed, beaten up and derided as sick sexual perverts screamed “enough is enough” and fought back against police violence and accepted societal brutality.

History is being recounted of how gays joined the sexual and political liberation movements of the 1960s and transformed the inculcated, internalized shame of being untouchable into the pride of defiant human truth and authenticity. Freedom was savored during the dawning of the Age of Aquarius and thousands of once despised queers burst out of the closet when religious bigots flooded the political system crying “Armageddon” and demanding the return of traditional values.

But then the stories stop. No one thought Armageddon would actually happen, and no one wants to tell that story anymore. The story of the lost generation. The story of how in the late 1970s, at the peak of the disco era frenzy when self-absorption was an unreflective way of life, death crept in like a burglar and silently, quickly, mysteriously stole gay men from the discos, the bathhouses, the social-family gatherings. Gay men just disappeared.

The hyper-dash to the movement for gay liberation and full equality connects to the early 1980s, when show-offs and body builders turned into terrified, shriveled, wasting away skeletons. No one knew why. And no one seemed to care.

But these gay men, some who fought in Vietnam, some who fought against it; some who became activists after Stonewall, some who took advantage of that activism – many who just danced – succumbed one by one to what took several years for researchers and the government to identify as HIV/AIDS.

In those very dark years of the government’s stubbornly cruel refusal of care, as gay people became pariah’s as “carriers” of the mysterious new disease that some believed could be transmitted through the air or through shared kitchen utensils—brave souls emerged to provide care and compassion to the terrified sick and dying.

That story of compassion, restoration of dignity, that loving grace of one human being to another is the subject of a new documentary, ‘5B,’ about the nation’s first AIDS Ward in San Francisco in 1983. The film opened LA Pride Friday night, June 7, and will have limited theatrical distribution on June 14 through Verizon Media outlet Ryot. Julianne Moore helped promote the film last May at the Cannes Film Festival.

“Young people today don’t realize what that was like. It was mysterious. It was frightening. People came in very sick and they died quickly,” Dr. Paul Volberding told the Los Angeles Blade in a recent phone interview. A researcher and clinician, Volberding headed the AIDS Ward at San Francisco General Hospital.

“Before we knew about HIV or had any test for it, people didn’t know they had anything wrong until they often got very sick. People often lost a lot of weight, were sometimes covered with Kaposi Sarcoma lesions, often couldn’t breathe because of the pneumonias’ that they had, and quite quickly people realized that if you got sick, you were going to die,” he continues.

5B, the unit on the hospital’s fifth floor, was created to try to provide aid and comfort. “The patients knew it was a death sentence; we knew it was and yet we tried to do what we could to help them stay comfortable as long as long as possible,” Volberding says. “So in the early years, it was mostly about trying to understand what was going on, starting to be able to predict a little bit about what was going to happen, and try to make it go a little bit more slowly.”

With its academic research environment, SF General became a kind of haven for the stricken.

“It was actually a popular place for gay men with AIDS to come because we were the only place that was doing actual research. The move to start the AIDS inpatient unit really came from the nurses who were seeing kind of spotty care around the hospital,” Volberding says. “It was to try to provide a place where these people really suffering and dying of AIDS would find a kind of loving environment. And the hospital absolutely went along with that right from Day One. They didn’t have to really be convinced. The community and the Health Department were so connected on this that it didn’t take a lot of effort – it certainly didn’t take any kind of activism to open up the unit.”

In 1985, the New York Times described 5B as “a model of care” for people with AIDS.

“Known within the hospital and the larger community as 5B, for its location on the fifth floor, the unit and its companion outpatient clinic, Ward 86, represent the unusual response by this city’s health care workers to acquired immune deficiency syndrome,” The Times reported. “For health care workers, 5B represents a victory over their own fears of the disease. It also forces them to focus on their feelings about homosexuality and their role in caring for a group of patients who will most surely die.”

Four years later, Los Angles still didn’t have a distinct AIDS Ward at LA County Hospital, prompting a series of demonstrations by ACT UP/LA.

“It was a shocking experience to watch people my own age dying in front of me,” Volberding says. “A lot of nurses were men and in a sense, they had it even worse because in many cases, they were gay themselves and some of them ended up having partners who died of AIDS. And some of them died of AIDS – not because they caught it at work but because they’re gay men.

I think the fact that women were very important part of the response is a significant one….They were true heroes. There’s no question about it.”

And unlike films such as “And The Band Played On…,” based on out San Francisco Chronicle reporter Randy Shilts’ book about the early days of AIDS, “5B” focuses on the unsung heroes and heroines of the crisis – the nurses.

Cliff Morrison created the unit and became the AIDS coordinator.

“I wasn’t the first person to talk about a specialized unit for the care of people with this disease,” Morrison told the Los Angeles Blade. “The first people to do so were those that wanted to get people with AIDS out of the general hospital population.  They were saying that we had to separate, segregate and protect the ‘innocent.’ I was terrified and wanted nothing to do with.”

Morrison grew up in the rural South (the North Florida Panhandle on the Suwannee River) in the 1950s and a segregated unit “scared the hell out of me,” he says. However, keeping up with care for the burgeoning numbers of people with AIDS made him re-think his position.

“It was a constant struggle and battle with staff all over the hospital that wouldn’t perform the basic care needs for patients. Their rooms were not cleaned, beds not changed, food left outside their door, entering their rooms with all the isolation precautions and signage was horrifying. I began to think, what about a unit for all the right reasons,” Morrison says. “A place where patients could receive the level of care and compassion that they needed desperately and that they begging for.  How about having staff, that are all professional nurses, that choose to be there, how about having a counseling staff for the caregivers, clients and their loved ones.”

In March 1983, Morrison discussed the idea with the Director of Nursing, including all the “challenges, obstacles, hysteria, backlash (from within the hospital and the outside community, locally and nationally),” and after coming up with a basic plan, the two started “quite a bit of convincing and cajoling” but, with the help of allies such as Mayor Dianne Feinstein and San Francisco Health Dept. Director Dr. Merv Silverman, the Chief of Medicine at SFGH, Dr. Merle Sande, got on board and “it was a go.”

That rural Southern experience, living with his poor, uneducated hard-working old half Native American grandmother growing up – a woman who became virtually a “personal servant” to the man who rescued her from farm work and poverty – had a profound impact on Morrison’s life. “I identified with her so much because I was the outsider in my family as well,” he says. “My grandmother used to hold me and rock me, telling me wonderful stories, and how much she loved me and that everything would be OK.”

As a teenager, Morrison gravitated to working in a hospital because he couldn’t handle working in the fields. “I hated dirty hands and always feeling gritty from dirt.  Working as an orderly in the local county hospital, I was drawn to all people suffering but particularly the elderly, who were often alone.  I found myself sitting with them, holding their hands, caressing them and hugging them,” he says, adding that he became the first in his family to graduate high school and go to college.  At the time, there was a “great need for nurses” because of the Viet Nam War so he entered nursing.

“My need for the personal touch and touching others was an inherent part of me from a very early point in my development,” he says. “By the time I got to the situation at SFGH in 1982-83, I found myself going around the hospital coordinating their care on all the various units and it was clear what was really missing was human touch.

“There wasn’t a lot that I could do, but I could touch and hold them and I did,” Morrison says. “Much to the horror of other staff who criticized what I was doing, I realized that it was central to everything that we were trying, and should try, to do.  When you touch someone in a loving, caring way, you share the most intimacy that you will ever share with another human being, and there is nothing sexual about it.”

Mary McGee was one of the many, many women who came forward to help the gay men society thought of as pariahs. Her first encounter with people with AIDS was in nursing school in New York. After graduating in 1984, she met others working on a medical surgical unit.

“They were all men and it was profound to see what they were going through and to see it in the context of knowing that there was just so much homophobia out there,” McGee tells the Los Angeles Blade, homophobia that combined with fear of the disease became “a vehicle for really marginalizing people.”

Straight and 22 with no previous connection to gays – though she had gone to a Catholic women’s college with a secret lesbian underground – she started having “some meaningful connections” with her patients. “I went down to Christopher Street in the Village for an AIDS vigil and people were sending candles out in little boats in the water, representing people who had died, and I was very deeply moved,” she says.

San Francisco beckoned McGee as a more manageable New York City. “And most importantly, I’d heard about this dedicated AIDS unit, which was the first in the country. And I was really, really hoping I could get a job there,” she says, which she eventually did.

As someone who was “really uncomfortable with the discrimination and the fear” against gay people, McGee focused on nursing as a response to suffering.

“The part about nursing that I loved was just really being present with people,” she says. “So that’s really what was being asked, just really be present with people and to touch them, to not be afraid to touch them and to hear their stories and meet their loved ones. And just to kind of counter this kind of ridiculous fear and homophobia. I don’t know how else to put it.”

McGee still sees numerous people’s faces” in front of her throughout her time nursing on 5A and 5B. But there is one gentleman she will never forget.

“He was in for PCP, but he’s responding to the treatment. He was a really sweet guy, articulate. He could still kind of walk on his own,” McGee recalls. “And there was another gentleman on the unit who had the terrible brain infection and his mental status was severely altered. He was agitated and he would yell out on the unit and you’d go in and try to soothe him and if you left he would start again. And I mean this poor guy…and the other man was very well aware of him.”

It’s the late 1980s. President Ronald Reagan had finally said the word “AIDS” and members of the presidential AIDS commission were coming to visit this model AIDS Ward. Everyone was nervous and the articulate AIDS patient reluctantly agreed to be the patients’ representative.

“I was on the night shift and he talked to me about it the night before it was going to happen,” McGee says. “And then I went home for the day to sleep, and I came back that evening and he told me that he had gotten a phone call that his mom had died. But he went ahead with the interview with the commission and shook the commissioner’s hand.

“And he’s telling me this story and the other patient is having a hard time,” McGee says. “And my patient who has gone through this that day — he’s walking the floors after what he’s been through. And he just went into that room and he sat with that man. He just sat him and comforted him. Well, it was, extraordinary. So that is someone that I will never forget. He is kind of a role model for me.”

Hank Plante, an openly gay reporter for the CBS News affiliate in San Francisco, is also featured in “5B.” He also notes the unheralded importance of women to the AIDS crisis.

“Some of the earliest caregivers for AIDS patients were lesbians and straight women. Many of the AIDS organizations in San Francisco were staffed and managed by these women. The public face of the San Francisco AIDS Foundation (the group’s Press spokesperson) was a lesbian, the group that delivered meals to people with AIDS (Project Open Hand) was founded by an elderly straight woman, the Shanti Project was run by a straight woman,” Plante tells the Los Angeles Blade. “So many gay men were overwhelmed taking care of themselves that it was a blessing to have these lesbians and straight allies helping them out.”

But while trained to be detached as as “objective” reporter, Plante could help but be impacted, too.

“As one of the first openly gay TV reporters in the country it was often hard for me to detach emotionally when covering AIDS stories” he says. “These were my brothers and sisters who were affected, so it was always more than just a story to me.  There were many times when I was reporting at San Francisco General when I’d have to go out into the hallway and compose myself before going back into a patient’s room to finish an interview.

“I’m glad that by the time I got to San Francisco I had honed my skills enough so I could be a professional and get the job done, even though it was sometimes tearing me up inside,” Plante says.

“On the other hand, covering AIDS as a gay man working in the mainstream media was a way for me to channel my grief and my anger over the disease, and to make me feel like I was at least doing something to help,” PLante says. “I think many of us who survived those early years do have a form of PTSD today.  You can’t lose that many friends without having it affect you for the rest of your life, as much we try to compartmentalize those years today.  Being part of the film brought those walls down again, and from the audience reaction so far, I can tell other people are experiencing it all coming back as well.”

Volberding hopes the film will trigger thoughts of what we might do differently next time.

Next time?

“There will definitely be a next time,” Volberding says. “I think in a sense Ebola was a ‘next time.’ Zika was a ‘next time.’ It’s seeming that we’re seeing a whole series of new viruses appearing – nothing that approached HIV in terms of how frightening it is. But we didn’t expect HIV to come along, either.”



Pride Flag In Delta

For the second time in less than two weeks, a pride flag in Delta has been defaced by vandals.

Ladner United Church, which is located at 4960 48 Avenue in Delta, shared the terrible news on their Facebook page on Saturday.

“Twelve days after our #Pride flag was defaced, and one week after we installed its replacement, our flag has been defaced again” reads the post.

“This is not simple vandalism, but a clear message and intentional criminal act”.

Here’s how Delta Mayor George V. Harvie responded to the pride flag in Delta being defaced:

Office of Mayor George V. Harvie@MayorofDelta

Langley Township removes woman’s pride flag from her home after neighbour complains

LANGLEY (NEWS 1130) — An Aldergrove woman is shocked and outraged after she says a rainbow flag she hung on her property was taken down by the Township of Langley.

Lisa Ebenal says she first hung the flag last week, but it was promptly ripped down and stolen by an unknown person.

An Aldergrove woman is outraged after she says staff from the Township of Langley removed the Pride flag from her property after a neighbour complained. She first hung a flag last week, but that one was stolen. @NEWS1130

When she hung a new flag on a sign on her property, it was also taken down again, but this time by staff from the Township, something she says is shocking and inappropriate.

“I put another one up, same flag, same place this last Thursday, and Friday afternoon between 12 and 1 p.m., I was told it was missing again, that a Township of Langley vehicle was seen right at that time in front of my house,” she says. “It’s clearly in my yard, and it’s clearly part of my property, so there’s no way they could mistake that for public property.”

According to Ebenal, a neighbour complained to the Township and staff had it removed. She wasn’t told who made the complaint or what the specifics of the complaint were.

“For some reason, they acted on that, the Township of Langley sent somebody out right away and took the whole thing down. They didn’t try to contact me, there was somebody home here, they didn’t knock on the door, and it is obvious that it was in my yard, and they took it down,” she says. “I was shocked when I found out what they actually did, and then when I found out that a neighbour complained that it was inappropriate and (the Township) acted on that, I was absolutely appalled”

Another neighbour called the Township on her behalf, and asked for it to be returned. A staff member brought the flag back and apologized.

“When I asked him why did they take it down, what was the complaint? He said it was anonymous and I still don’t know what the complaint was. I said well there was no reason to take it down, and he said ‘sorry it was a mistake,’” she says.

Ebenal says she is angry and shocked the flag was taken down during Pride month when many cities across the country are raising the flag to support LGBTQ rights.

To her the flag represents a struggle for gay rights, but she says she sees it as something even bigger than that.

“Its just shocking that in this day and age that somebody would take that stance against the Pride flag which stands for more than just the gay pride movement. To me, it’s a sign of Canada and the country I live in and all the people getting a long together and everyone having equal rights,” she says. “It also means that, the whole fight and struggle that the gay community has gone through to get to this point, and then to have the flag ripped down, and to have it ripped down by the city it was so insulting and so unbelievable.”

She’s since put the flag back up, and is considering making it a permanent fixture in her home.


Lauren Boothby@laurby


Langley Township removes woman’s pride flag from her home after neighbour complains

Canada- All about trichomoniasis, the world’s most common curable STI

Around 156-million new cases of the sexually transmitted infection (STI) trichomoniasis were diagnosed worldwide in 2016, according to new statistics from the World Health Organization.

That’s more than chlamydia, more than gonorrhea and more than syphilis – which are all infections that we hear much more about in Canada.

Because the disease is most common in low-income countries, Canadians might not be familiar with it, according to Dr. Rob Dmytryshyn, medical director of the Bay Centre for Birth Control and special treatment clinic at Women’s College Hospital in Toronto. Still, he estimates that his clinic sees a case every couple of months.

Here’s what you need to know:

What is trichomoniasis?

Trichomoniasis, sometimes called “trich” (pronounced “trick”) is a sexually transmitted infection caused by a parasite – not bacteria or a virus, like many other STIs.

The parasite is a single-celled organism called Trichomonas vaginalis. It’s spread through sexual contact and can infect both the penis and vagina, according to information from the B.C. Centre for Disease Control.


Unlike many organisms that cause STIs, it can actually survive a short time outside the body. “It can live in places like damp towels,” Dmytryshyn said.

“So this is one that you could possibly claim that you caught it from a towel.”

The Public Health Agency of Canada says it’s rare to get an infection without sexual contact though.

How common is it?

Trichomoniasis is the world’s most common curable STI, according to the WHO – though there are others, like herpes, that are much more common but can’t be cured.

Because doctors in Canada aren’t required to report trichomoniasis infections to public health agencies, there’s not great data on how common it is in Canada. A 2017 study of sexual health clinics in western Canada found that about 2.8 per cent of patients had the infection – though as the study was done on people at sexual health clinics, that may have skewed the results.

In the U.S., the Centers for Disease Control and Prevention estimates that around 3.7-million people have the infection. It’s the most common curable STI there, the CDC says.

What are the symptoms?

Most people don’t actually show any symptoms, said Dr. Melanie Taylor, author of the World Health Organization’s statistical report. “People don’t realize that they have the infection, they don’t realize they are at risk and they don’t go in for testing and treatment and thus the opportunity to transmit the infection is quite high,” she said.

That doesn’t mean it’s harmless though. In women who do show symptoms, it looks something like a yeast infection, with inflammation of the vaginal tissue, Dmytryshyn said. There may be a “yellowy or maybe creamy discharge” as well.

Men can also get irritation of their penis and occasionally a discharge as well, he said.

READ MORE: Are online hookups behind Canada’s rising STI rates?

Left untreated, trichomoniasis can be “very uncomfortable” for a woman and cause lower abdominal pain, Taylor said. “In addition, if the woman is infected during pregnancy, it can cause adverse pregnancy outcomes, specifically premature delivery, premature rupture of membranes and low birth weight due to that prematurity.”

Infection with trichomoniasis can also put you at a higher risk of catching HIV or other serious STIs, because it irritates the vaginal wall, Dmytryshyn said.

How is it treated?

In Canada, most patients are easily treated with Metronidazole, an antibiotic that also kills the parasites, Dmytryshyn said.

It’s important to treat both sexual partners, as they can easily keep passing the infection back and forth, he said.

Using a condom and getting regular STI testing is the best way to prevent and detect the infection, he said.


All about trichomoniasis, the world’s most common curable STI

Homeless numbers in Vancouver have increased for another year in a row

Homelessness is at its highest level in Vancouver since the city started the annual Homeless Count – back in 2002 – it was revealed today.

Those findings were part of a presentation to Vancouver city council on Wednesday, which looked at this year’s results.

Overall, this year’s count indicated a 2% increase in individuals experiencing homelessness. And while the numbers did rise, the city said the size of the increase “represents a slowing of the growth of homelessness in the city over the last two years.”

In total, 2,223 people were identified as experiencing homelessness. Of these, 72% (1,609), were sheltered and 28% (614) were unsheltered.

As well, 27% reported being homeless for less than six months showing and 81% of survey respondents were already living in Vancouver when they became homeless.

The survey also found that 39% of those surveyed identified as Indigenous, and “Indigenous people continue to be vastly overrepresented in the homelessness count in Vancouver compared to the overall population,” the city said.

“While this year’s Homeless Count results show that the bold actions being taken by the city and its partners might be beginning to turn the tide on the growth of homelessness in Vancouver, there are still more than 2,000 people without a home in our city,” said Vancouver Mayor Kennedy Stewart. “This is unacceptable.”

Stewart said the city has seen the provincial government “come to the table with unprecedented investments, but the federal government’s pledge to cut homelessness in half hasn’t yet come with money on the ground and that’s the real missing piece.”

Despite the overall rise in homelessness, the city is encouraged by the fact the rate of growth for homelessness has slowed.

In a release, the city said it is “optimistic that we can continue to improve our ability to meet the needs of those experiencing homelessness to make homelessness rare, brief, and one time.”

As part of Homelessness Action Week, which takes place every October to raise public awareness of homelessness and rally local solutions, council also approved 14 Homelessness Services grants.

Details on these grants can be found here.


Eric Zimmer


Celebrate National Indigenous Peoples Day at Trout Lake Park this June

As if there weren’t enough reasons to get out and enjoy the sunshine, National Indigenous Day is coming back to a popular Vancouver city park this month.

The free event takes place at Trout Lake, and attendees can expect a jam-packed day full of entertainment, activities, and family fun brought to you by the community from noon until 5 pm.

First Nations, Métis, and Inuit from all over Canada will come together on this day to celebrate Indigenous diversity by sharing their spirit, stories, songs, art, and dance.

There will also be free bannock for everyone, while supplies last, donated by Mr. Bannock.

Some of the Indigenous performers who will be there include:

  • Kwhlii Gibaygum Nisga’a Dancers
  • Orene Askew aka DJ O Show
  • Sandy Scofield
  • Dylan Rysstad
  • Wolf and the Raven
  • Rex Smallboy
  • Road Engine Dreams
  • Murray Porter

There’s also going to be a ton of food trucks, including:

  • Mr. Bannock
  • Waikiki BBQ
  • The Bannock Wagon
  • Wings Outdoor Grill
  • REEL Mac and Cheese
  • Real Country Pierogi
  • Flying Fish N Chipper
  • Bandidas Taqueria

National Indigenous Peoples Day has been celebrated since 1996.

Originally named ‘National Aboriginal Day’ in 1996, it was renamed by Prime Minister Justin Trudeau in 2017 as National Indigenous Peoples Day.

This day of celebration in Vancouver has been planned and hosted by The Vancouver National Indigenous Day Organizing Committee since 2013.

National Indigenous Peoples Day 2019

Where: Trout Lake Park — 3300 Victoria Dr, Vancouver
When: Friday, June 21, 2019
Time: Noon to 5 pm
Admission: Free


Samantha Peng



Women’s Personal Safety Workshops


Put on by the Vancouver Police Department, the Women’s Personal Safety Workshops are returning this fall.

The idea for these workshops first came to be in 2013, when a group of VPD female police officers came together and created the VPD Women’s Personal Safety Team.

The tactics taught are designed to be easily learned and remembered by women who have no prior training.

These workshops will be held on September 26th (West End Community Centre), October 24th (Jewish Community Centre), and December 11th (Hastings Community Centre).

The first workshop runs from 6:00 p.m. – 8:00 p.m., the second one from 6:30 p.m. – 8:30 p.m. and the last one in December goes from 6:00 p.m. – 8:00 p.m.

Participating In The Workshops

The workshops are open to women, who are a minimum age of 16 years old.

Anyone under 18 years must come with a parent to sign their waiver.

Below is a video of what you can expect at these workshops:

Author: Hamed Amiri


Women’s Personal Safety Workshops Vancouver 2019

What Working As The Head Nurse In The Country’s First AIDS Ward Was Like

In the early ’80s, a group of nurses and volunteers at San Francisco General Hospitalgot to work to create what would become the only special care unit for AIDS patients in the entire United States, called Ward 5B. At the time, the disease epidemic that would later be classified as HIV/AIDS was raging. Patients felt isolated and alienated. Healthcare professionals were riddled with fear of contracting the mysterious and devastating disease, and some refused to care for patients altogether.
This was absolutely unacceptable to Alison Moed. At the time, Moed was a per diem nurse working on the ward. “I wasn’t expecting those attitudes in my profession,” she says. “I guess I could have, should have — because nurses are just people. Doctors are just people, too. But still, we do have a responsibility to care for everyone and to care for them in an equal way.” So, she and the other clinicians and volunteers set out to change the standards of care. Moed would go on to become the head nurse in 5B.
In 5B, there was an emphasis on “caring not curing.” Nurses were allowed to touch and hug their patients, and they were encouraged to get to know them on an intimate level. That meant having frank discussions about death and the reality of the disease. “I didn’t often find that kind of open attitude of talking being able to talk about death with a patient, and then also with members of the staff,” Moed says. “Inviting them to participate was really interesting to me.”
Over time, 5B became an example for other hospitals around the world, and a beacon of hope amidst the worst periods of the AIDS epidemic. Now, the ward is the subject of a new documentary, called 5B, which will be theatrically distributed on June 14 by Verizon Media. Moed spoke to Refinery29 about her experience and the legacy she hopes they can leave:
It’s hard to imagine the uncertainty and fear people had about HIV/AIDS during the late ’70s and ’80s. How would you describe the attitude toward the disease, among healthcare professionals and the general population?
“I think at its best, it was fear of an unknown disease, and fear that it could be passed along. Fear by people in the healthcare community and in the general public that they could come down with this disease. It was unenlightened, but it was a natural reaction. We’re all afraid of the unknown, and we all have an intrinsic fear of relentless infection or something that could overwhelm us like a plague.
“And at the worst, I think there were people who used their homophobia — or basically fear of a population that was different from them — to kind of fuel their ignorance or lack of knowledge about the disease, and to inform how they react or how they looked at members of the community who had it. The fact that it was most obviously appearing in a community that was already stigmatized and feared made it easier for people to feed into their own fears and hatred.
“In the healthcare community, I think you saw the same thing. It was terribly disappointing to me, because hopefully healthcare workers can have a scientific background to act on, and frame what their views are. Many didn’t utilize the grounding they had because of homophobia.”
What made you want to volunteer to work in the ward?
“I worked per diem at San Francisco General Hospital, and having heard the reactions of other healthcare workers, having seen the treatment that these patients were receiving, my sense of injustice was already aroused. There was something going on there. I gravitated towards nursing where there could be interaction or communication, or patients were going through important life-changing events, where you could really talk to people about things that mattered.
“[Also,] I had best friends in the gay community. When I moved out from New York, I stayed with a friend and his lover in the Castro. Somewhere in me was the feeling that, if I participated in the fight for better care, we’d be putting an end to this. We didn’t know the extent of the epidemic. I thought that my friends would be spared. I felt as though I was protecting and taking care of people who were dear to me, and by extension their community.”
What did you learn from your patients and colleagues in 5B?
“On a broad level, we learned how to take care of patients who were going through this terrible disease. It was about caring, not about curing. It was about touching, and interacting. Letting people know they were safe. Letting people know that they were accepted. Letting people know that their wishes were going to be listened to, that their thoughts about their care and options were going to be respected and heard. That was not necessarily the mode in those days.

The fact that it was most obviously appearing in a community that was already stigmatized and feared made it easier for people to feed into their own fears and hatred.

“We learned how important it could be to bring the community onto the unit. There are people in families, in one’s extended network, who want to be part of the patient’s care, and that’s healing itself. We also learned how important it was that people weren’t just discharged — that they went home to an environment that was going to be as supportive as possible. It wasn’t just in the hospital that patients need to be taken care of. We learned a lot about compassion. There was the power of touch, but we also learned the power of laughter. People wanted to laugh, they wanted to be able to express themselves in the whole broad range of human feeling up to their death.
“We learned that compassion is one of those things that doesn’t become depleted. The more you give it, it actually replenishes. It’s one those things where, the more you give, the better you feel, and want to give. That’s what love is about, right? There was a very loving exchange, and loving feeling on the unit, and I know you could see it. We were really committed to what we were doing and passionate about being able to do it.”
There are so many themes in the documentary that are relevant today, like healthcare access for marginalized communities. What do you hope today’s audiences glean from the film?
“I’d hope that they learn that everyone can do something for those segments of the public population — whether that’s someone receiving an abortion, someone who has different colored skin, speaks a different language, or has a different kind of sexuality than someone perceives themselves to have. I feel really powerless sometimes looking at this wash of discrimination. [But] I hope people learn that you can make a difference on a very basic individual level.
“You can just start out small, and what you do has a ripple effect. It’s like putting one foot in front of the other, and before you know it, you’re way down the trail that seemed so long and impossible to navigate. You just have to start on a human level, from your heart.
“People called us heroes, but we were just people doing what we can do. Someone said to me, Well, heroes are just people. All of us in our own way have a particular gift, and can make a difference doing what we can do. We’re not all healthcare providers, but we all have mouths. I would like people to know that they can make a difference without making a grand difference. That’s how we start to change a culture and the world.”