Dr. Neora Pick in the hallway of the Oak Tree Clinic. (Etye Sarner)
WORLD AIDS DAY – ‘PATIENTS TELL US THE STIGMA IS WORSE THAN THE DISEASE’
Dr. Neora Pick and the multidisciplinary professionals in Vancouver’s Oak Tree Clinic tailor comprehensive programs for each person, from trauma care to nutrition programs
By Robert Sarner, The Times of Israel, December 1, 2019
VANCOUVER — As medical director of Canada’s only multidisciplinary clinic for women and children with HIV, Dr. Neora Pick finds this time of year emotionally charged. December 1 is World AIDS Day, which commemorates the millions who have died from the disease and highlights the fight against the HIV virus behind AIDS. After nearly 15 years at the Oak Tree Clinic in Vancouver, on the front lines of treating those with the potentially deadly infection, the Israeli-raised Pick knows only too well the tragedy and triumph involving the pandemic.
“Especially on World AIDS Day, I think about all the people who’ve died from the disease before there was treatment that could have saved them,” Pick told The Times of Israel during a recent interview at the clinic. “I also think about the huge progress made where we now provide one tablet a day for newly diagnosed people to give them normal lives, and yet, sadly, the stigma of HIV still persists.”
Pick began her career in internal medicine and infectious diseases in Israel. She is deeply committed to her work at the clinic, located at the British Columbia Women’s Hospital (BCWH), close to the largest Jewish day school in western Canada.
AIDS, which attacks a person’s immune system, has exacted a heavy toll since first identified in 1981. According to the World Health Organization (WHO), it has killed 32 million people. In 2018, nearly 800,000 people died of HIV-related illnesses worldwide while 1.7 million others became newly infected with the virus. At the end of last year, 38 million people were living with HIV, its severity varying considerably between countries; sixty-nine percent of global HIV cases https://www.afro.who.int/health-topics/hivaids (25.7 million) are found on the African continent, says the WHO.
In Canada, HIV is a serious concern, even if the situation is far less dire than in Africa. According to government figures, 63,000 Canadians had HIV at the end of 2016, an increase of 5% in two years. Fifty-three percent of new HIV infections were transmitted through male-to-male sex, 33% from heterosexual contact, and 11% from injection drug use. About a quarter of HIV-positive people were women.
In Israel, the number of HIV cases has grown in recent years following a decline between 2012 and 2016. According to Healthy Ministry figures, 431 people (including six babies) were diagnosed with HIV in 2018. Nearly a third were women, representing a significant increase from 2017.
When a marginalized population becomes more so
In Western countries today, those newly infected with HIV face a radically different future from 30 years ago when HIV was effectively a death sentence. While there’s still no cure, antiretroviral therapy has proven highly effective in controlling infection and minimizing transmission, ensuring that people with the virus, including pregnant women and populations at risk, can lead healthy, productive lives. If medical science has come a long way in this area, public attitudes have not.
“When people hear about AIDS, many still think of it being a terminal disease and often pass judgment on those afflicted with it,” says Pick, who is in her mid-50s. “If you get cancer everyone has sympathy for you, but with HIV, the attitude is often, ‘It’s your fault.’ That kind of thinking hasn’t changed much over the years. The biggest fear used to be of the virus. Now it’s more a fear of people with it. Patients tell us the stigma is worse than the disease.”
Such ostracism has an added sting because it’s often directed at people already marginalized by their socioeconomic status, culture, race or sexuality. More awareness about current facts could help reduce the stigma and the isolation it causes.
“In principle, treatment today for HIV and AIDS is no different than taking medication for blood pressure or diabetes,” says Pick, also a clinical professor in the department of medicine at the University of British Columbia (UBC). “It’s now a chronic, manageable disease. Patients tell us that if they tell others they’re HIV positive, they’re often made to feel they should hide it, that it’s something shameful. HIV should be seen like other treatable conditions but that’s not the way it’s perceived.”
Another popular misconception Pick cites can have serious consequences: many people think you get HIV from intravenous drug use, although that’s a minority. The danger is people think that because they don’t use needles, they’re safe from HIV. They’re not, given most transmission involving women is through heterosexual sex. (For men, it’s from sex with other men).
Pick laments that other misinformation still abounds — that you can get HIV from casual contact like kissing or hugging; that mothers living with HIV can’t have healthy children; or that it’s a disease of young people.
Thinking outside the box
Born in Tel Aviv, Pick spent most of her youth there. Following her service in the Israeli Air Force, she attended Ben-Gurion University in Beersheba where she studied medicine for seven years was an internal medicine resident for four, after which she moved to Haifa to work in infectious diseases.
In 2002, Pick and her husband, a systems analyst from Tel Aviv, moved to Canada with their three young children to join a lab in UBC’s infectious disease department. Today, one of their daughters is back in Israel working as a journalist, while their son is applying to do a masters in immunology at the Weizmann Institute in Rehovot. Another daughter is studying business in Vancouver.
Pick joined the Oak Tree Clinic (OTC) in 2005 as an infectious disease physician and became medical director in early 2011. She believes her personal background and Israeli upbringing serve her well in her work at OTC.
“Growing up in Israel prepared me to be open-minded and not afraid of changes and challenges,” says Pick, who visits Israel at least once a year to see family. “Dealing with everything there, you develop an inherent resilience. You become used to thinking outside the box. Also, I’m from a family that includes Holocaust survivors, which is maybe related to the part of my work which involves advocating for human rights and speaking up for those who feel they can’t speak to the system.”
Attitude and sensitivity are paramount in how OTC engages with its 700 active patients each year so they feel it’s a safe, caring place. Starting with the first point of contact, staff treat patients with respect and discretion, free of any sense of judgment.
A one-stop approach
Established in 1994, OTC is one of very few clinics of its kind in North America. It specializes not only in HIV treatment and women’s healthcare but also serves the social and mental health needs of patients of all ages. Offering a one-stop approach, it provides multiple services under one roof spanning a woman’s life, including the health issues of aging with HIV. OTC also gives pre-conception counseling to couples in which at least one of the partners is HIV-positive.
Located on the top floor of BCWH’s six-story Women’s Health Center, the clinic has a welcoming feel. Two affable women oversee the spacious reception area where natural light streams in through large windows, green plants flourish and soft music plays in the background. On display is a selection of reader-friendly brochures about HIV, women’s health and the clinic’s services.
The 15-member team provides holistic care for women and their families in a supportive, integrated, trauma-aware environment. The mostly female staff includes adult, pediatric and obstetric/gynecological HIV specialists, nurse practitioners, dietitians, pharmacists, psychiatrists, a trauma/addiction counselor, clinical and outreach social workers, and researchers.
Each morning, the team gathers in front of a large whiteboard in the hall to discuss the patients coming that day and the best way to care for them. The treatment plan for each is illustrated with color-coded magnets.
In seeing patients, Pick and her colleagues identify the medical challenges each is facing and arrange treatment to improve their health within the clinic’s scope. She also ensures staff stay up to date on new developments involving AIDS/HIV. Twice a month, Pick organizes education sessions at the clinic with outside experts, and sends staff to conferences.
Dealing with trauma on a regular basis
Working at OTC isn’t for the faint of heart. Many patients have major addiction and mental health issues. Some are or were in abusive relationships causing significant trauma.
“What we commonly see is that women who’ve suffered trauma, whether it’s sexual abuse or violence, try to numb it through substances,” says Pick, who speaks with great compassion for patients. “If there was no needle exchange or safe injection, they may have gotten HIV — and frequently Hepatitis C — as a result. Beyond treating the HIV, we try to treat the trauma. To make a difference, we need to be trauma-informed to provide trauma-aware care.”
According to Pick, 80% of women with HIV in Canada have suffered trauma and have mental health issues, mostly related to depression, anxiety and prior abuse. The majority are from minorities, including many indigenous people and immigrants, mostly from Africa. As a result, OTC has hired staff from those groups to become more culturally sensitive.
Given how difficult the work can be, Pick praises her colleagues, who often develop long-term, meaningful relationships with patients.
“One of the challenges our staff face is vicarious trauma,” she says. “They can be traumatized by just hearing patients tell the difficult stories of everything they go through. We also have to deal with tragic situations of patients who’ve died and others who aren’t doing well with their addiction. For example, Vancouver’s terrible opioid crisis has claimed the lives of some of our patients.”
On the wall behind Pick in the staff room is a tribute to patients who’ve died.
“A few years ago, as a way to acknowledge a death, the team put a large tree decal on the wall here,” Pick says. “When a patient dies, we light a candle and add a leaf to the tree on which we write the patient’s initials [to keep the name private]. This ritual has helped staff deal with loss and keep the patient’s memory in our hearts and on a leaf on the tree.”
To be effective, staff have to protect themselves.
“We have to do all we can not to be traumatized ourselves because otherwise, we won’t be able to provide good care,” says Pick. “We try to support each other. We’re very bonded and that’s the only way to do this. If I had to do this by myself, I would’ve burnt out pretty quickly.”
Pick receives patients four days a week. Because OTC is a specialized clinic, she spends far longer with each patient than general practitioners typically do with their patients.
“We generally devote 45 to 60 minutes to each appointment because there are so many things to address with the person,” says Pick, who is helping write the provincial and national guidelines for the care for women and children with HIV. “We address the medical aspects, the HIV, the social determinants of the patient’s health. Compared to a GP who sees 40 patients in a day, we see far fewer but give each one a lot more attention.”
In the process, she develops a bond with patients.
“I love my work because of the interaction with the patients,” says Pick. “Because of how we relate to our patients, they feel our clinic is a safe place for them. As we become their primary healthcare provider, not just HIV care, they see us every three to six months. We become almost like a second family for them. Some don’t have anybody else.”
In speaking with Pick, her devotion to and respect for patients are readily apparent.
“The patient population is very resilient, especially those women who come from Africa, most or many of whom got HIV from rape,” she says. “There women don’t have full rights. They can’t even have abortions without the man’s permission. To see the resilience and wisdom of these women and how well they’re doing here is amazing, and highly rewarding. I love working with them and helping give them the voice they often lost during their trauma. I learn a lot from them.”
Pick, who clearly derives great satisfaction from her work, tells the story of a young woman in Vancouver oblivious to being HIV-positive until she became sick. Common to people with untreated HIV, she developed pneumonia, collapsed and was admitted to the ICU.
“She was intubated and referred to our clinic,” recalls Pick. “She was really thin and thought she was going to die. We gave her all the services we know and I reassured her she was going to live and that she could be a mother and have a family. At first, she didn’t believe me. Here we are six years later, and she has two children and a husband, is very happy, looks healthy and is enjoying motherhood.”
The clinic doesn’t limit its work to only those who come in for care. Two outreach workers venture into city streets, working with homeless and other hard-to-engage women. They try to bring them into the clinic for medical appointments but much of their work is done in the community, in adverse conditions.
“Our priority is for women to take the medication so they’ll be well,” says Pick. “But their priority may be a lack of housing or the violence they face at home or other issues. So we have a social worker who tries to address those issues because otherwise we won’t be successful in treating their HIV.
“If you don’t have somewhere to live or you don’t have food, taking your antiretrovirals may be less of a priority for you and who cares about that? We do. Sometimes you need only one person to believe in you to thrive. Some of them never had that one person,” she says.
For children living with HIV, OTC’s multidisciplinary pediatric team sees them every three months and ensures they take the necessary medication to control the virus. Peer support is an important part of the treatment.
Pick says one of OTC’s biggest achievements is that since 1997, among the nearly 600 pregnant HIV-positive women receiving care and medication at the clinic, there hasn’t been one HIV transmission to the baby.
A few days after marking World AIDS Day on December 1, OTC will also celebrate its 25th anniversary. Pick has invited patients, staff and the three co-founders to the event, which will be opened by an elder from a local Indigenous tribe. It will feature First Nations drummers, African dancers, an art corner for patients and their children, special food and an opportunity for patients to mingle with current and former staff. Pick’s wish is that it will help empower patients.