Positive Living Magazine

N E W S A N D T R E AT M E N T I N F O R M AT I O N F R O M T H E P O S I T I V E L I V I N G S O C I E T Y O F B R I T I S H C O L U M B I A

ISSN 1712-8536

JULY • AUGUST 2019 VOLUME 21 • NUMBER 4

HIV vaccine is the dream that won’t quit

Kink & cleanliness

Facing dementia

The CHECKUP Project

S

Electronic voting is not available for this year’s AGM.

SEPTEMBER

5

2019

WHERE

WHEN

POSITIVE LIVING SOCIETY OF BRITISH COLUMBIA

ANNUAL GENERAL MEETING

Thursday

Chateau Granville Hotel

1100 Granville Street Vancouver

REGISTRATION

DINNER

MEETING

COMMUNITY FORUM

5:00-5:30 PM

5:30-6:30 PM

6:30-7:00 PM The Berlin Patient Cure Research 7:00-8:00 PM

Voting for the Board of Directors and any Special Resolutions is done by mail-in. The results of the voting will be announced at the AGM by an Independent Returning Officer, who will also count the votes.

All members who accept mail from the Society, and for whom the Society has current mailing addresses for, will receive two mail-outs, one in July and one in August.

The 1st mail out (in July) will include: information about the AGM; an invitation to members to submit special resolutions for consideration by the membership; and an invitation to members who want to run for the Board of Directors to submit the necessary nomination materials. The text of any special resolutions and the information provided by members who want to run for the Board must be received by the Returning Officer by 5:00 pm on August 6, 2019.

The 2nd mail out (in August) will include: the ballot to vote for the Board of Directors; the statements and biographical information of those candidates for election to the Board who have supplied them; if applicable, the ballot required to vote for or against any special resolution(s) submitted; and a postage-paid return envelope.

All mail-in ballots must be received by the Returning Officer no later than 4:00 pm on August 30, 2019.

SIX two-year term positions on the Board of Directors of the Society are to be elected for the period 2019-2021.

Important dates to remember in 2019

First mail-out sent not later than

Nominee information and the text of any special resolutions to be received by the Returning Officer by 5:00 PM on

Second mail-out sent not later than

Pick up of ballots (from the Society’s Reception Desk) by individuals who do not receive mail starting on

JULY 11

JULY 26

AUGUST 8

AUGUST 12 AUGUST 30

If you have any questions or would like to receive a copy of the Society’s Annual Report, please call Joel Lung, Secretary, at 604.893.2220 or Toll-Free (1.800.994.2437 x 221) and leave a confidential message. All documents relating to the AGM will also be available on the Society’s website at www.positivelivingbc.org

Completed ballots to be received by the Returning Officer by 4:00 PM on

If you require ASL interpretation at the AGM, please contact the Secretary of the Society.

Refreshments will be served.

I N S I D E

Follow us at:  pozlivingbc  positivelivingbc

PAGE

5

A CUP OF TABOO

The first in a brand s panking new sex column

PAGE

13

COVER STORY

We’ll keep hoping for an HIV vaccine until one gets delivered.

PAGE

23

LET’S GET CLINICAL

A wholistic approach to Inuit HIV research

PAGE

7

THE ALCOHOL DIALOGUES

Assessing the role of alcohol among PLHIV

PAGE

16

KNOW YOUR DRUGS

What you need about the generic and brand name drugs you are taking

PAGE

24

POZ CONTRIBUTIONS Recognizing Positive Living BC supporters

PAGE

8

DEMENTIA AND HIV

Recognizing the signs and types of dementia in ourselves and our peers

PAGE

19

GIVING WELL

Jeff Anderson talks about thirty years of AIDS activism

PAGE

25

VOLUNTEER PROFILE Volunteering at Positive Living BC

 positivelivingbc.org

PAGE

10

PREPARING FOR END OF LIFE: PART 3

Seeking a medically assisted death is political and moral landmine

PAGE

21

BACK TALK

Strategic planning has been, and remains, the core of Society work

PAGE

28

LAST BLAST

The fun and games planned for members this summer. Literally.

HEALTH PROMOTION PROGRAM MANDATE & DISCLAIMER In accordance with our mandate to provide support activities and prejudice. The program does not recommend, advocate, or endorse facilities for members for the purpose of self-help and self-care, the the use of any particular treatment or therapy provided as information.

Positive Living Society of BC operates a Health Promotion Program The Board, staff, and volunteers of the Positive Living Society of to make available to members up-to-date research and information BC do not accept the risk of, or the responsiblity for, damages, on treatments, therapies, tests, clinical trials, and medical models costs, or consequences of any kind which may arise or result from associated with AIDS and HIV-related conditions. The intent of the use of information disseminated through this program. Persons this project is to make available to members information they can using the information provided do so by their own decisions and access as they choose to become knowledgeable partners with hold the Society’s Board, staff, and volunteers harmless. Accepting their physicians and medical care team in making decisions to information from this program is deemed to be accepting the terms promote their health. The Health Promotion Program endeavours to of this disclaimer. provide all research and information to members without judgment or P5SITIVE LIVING | 1 | JULY •• AUGUST 2019

Message The Positive Living Society of British Columbia seeks to empower persons living with HIV disease and AIDS through mutual support and collective action. The Society has over 6,000 HIV+ members.

POSITIVE LIVING EDITORIAL BOARD Tom McAulay, chair, Glen Bradford, Wayne Campbell, Joel Nim Cho Leung, Victor Elkins, Jason Motz, Adam Reibin MANAGING EDITOR Jason Motz

DESIGN / PRODUCTION Britt Permien FACTCHECKING Jason Motz COPYEDITING Maylon Gardner, Heather G. Ross PROOFING Ashra Kolhatkar CONTRIBUTING WRITERS Jaylene Acheson, Hesham Ali, Glen Bradford, Wayne Campbell, Ken Coolen, Jason Hjalmarson, R Paul Kerston, Brandon Laviolette, Kathy Lepik, Tom McAulay, Sean Sinden PHOTOGRAPHY Britt Permien DIRECTOR OF COMMUNICATIONS AND EDUCATION Adam Reibin DIRECTOR OF PROGRAMS AND SERVICES Glen Bradford TREATMENT OUTREACH COORDINATOR Wayne Campbell SUBSCRIPTIONS / DISTRIBUTION John Kozachenko, Matthew Matthew Funding for Positive Living magazine is provided by the BC Gaming Policy & Enforcement Branch & by subscription & donations.

Positive Living BC | 1101 Seymour St. Vancouver BC V6B 0R1

 Reception 604.893.2200  Editor 604.893.2206  living@positivelivingbc.org  positivelivingbc.org

Permission to reproduce: All Positive Living articles are copyrighted. Non-commercial reproduction is welcomed.

For permission to reprint articles, either in part or in whole, please email living@positivelivingbc.org

© 2019 Positive Living

from the chair

T

his is the last issue of Positive Living before the Society’s next Annual General Meeting, to be held on September 5, 2019. So, I’m taking this opportunity to bring forth the key issues facing us as we address our future. I’ve highlighted some of these matters before; some I have yet to speak about publicly.

In terms of governance, questions worth asking include: Is an all HIV-positive board sustainable in today’s environment?

Do we need to re-examine and change our governance structure? What is the role of Board members in daily operations?

What is our strategic planning process?

Who are the real leaders—people living with HIV or people working in HIV? How do we match the diversity of our community with the diversity of our leadership and programming? How do we become a more effective provincial organization?

Addressing membership and engagement, or lack thereof, we must consider: Are our mission and vision statements still relevant?

Is our public image and reputation as good as it can be? Strengthening our bonds with community partners; membership surveys and town hall meetings/finding ways of hearing from our members; identifying underserved communities or those hurt by funding cuts (trans, aboriginal, women, new immigrants, ethnic groups, etc.); getting back to our roots (revisioning the AIDS WALK, for example); how does AIDS activism translate to our work in the 21st century?; and what is Positive Living BC’s relevancy to gay men?

P5SITIVE LIVING | 2 | JULY •• AUGUST 2019

TOM MCAULAY

Financial matters are important to, including: financial sustainability for the Society in the long run; expanding our Community Dental Clinic social enterprise; fundraising in the era of diminishing public support and knowledge of HIV; and in response to an idea I wrote about in the January/February issue—members becoming monthly donors—a member wrote to me and suggested, ‘why not charge annual membership dues?’

I am committed to helping steer Positive Living BC into the future. The Board and I can’t do this work alone. I encourage you to get involved and contribute to the dialogue. I want to stress to my fellow members that if you don’t get involved, you won’t have a say in our future. For three years now, I have witnessed the decline of our members being engaged in this organization, whether in accessing services or participating as a volunteer. It’s time to wake up and smell the coffee. We as members must participate in this model of empowerment for the voices of positive people…or our voices will disappear.

Currently, I want to give a special thanks to my fellow Board members for their contribution over the past year—which has been difficult at times but also very fulfilling. My own level of confidence and self-worth has been greatly enhanced by my participation on the Board, specifically because of my fellow Board members’ support. I could not have survived without them. Thank you one and all! 5

PrEP can curb the epidemic for high-risk groups in India

pPre-exposure prophylaxis (PrEP), a com-

bination drug used to prevent HIV infection, has already gained significant traction in the US and Europe. The once-a-day pill, when taken consistently, can reduce the risk of HIV acquisition by over 85 percent. A new study published in Clinical Infectious Diseases by an international research team suggests that making PrEP available to men who have sex with men (MSM) and people who inject drugs in India may be a cost-effective way of curbing the epidemic there.

“We know PrEP helps stop the spread of infection; the question is whether it is a good use of limited resources? Our study shows that PrEP is a cost-effective strategy for both MSM and people who inject drugs (PWID) in India. For these groups, especially in areas with high HIV incidence, PrEP is worth rolling out,” says lead and corresponding author Pooyan Kazemian.

Using a widely-published mathematical model to project clinical and economic outcomes of HIV disease, the authors compared various prevention and testing programs—including annual or biannual HIV testing alone, as well as PrEP paired with HIV testing—that could help reduce HIV infection and therefore improve survival for these high-risk groups. Their findings suggest that PrEP would increase survival substantially by reducing infection risk, while more frequent HIV testing would provide little additional benefit. PrEP paired with biannual HIV testing was the only cost-effective strategy, improving average per-person survival by nearly one year and preventing more than 270,000 HIV transmissions in India over 15 years.

“While the World Health Organization recommends quarterly HIV testing for those on

PrEP, our analysis identifies PrEP with semi-annual testing as the cost-effective HIV prevention strategy for MSM and PWID in India,” says co-author Nagalingeswaran Kumarasamy.

However, the authors note, a nationwide PrEP rollout would be quite costly. If nearly 60 percent of MSM and PWID across India participated in the program, it would increase HIV care expenditures by over US$900M over a 5-year period. “Our findings suggest that geographic areas of highest HIV incidence should be targeted first to reduce the budget required,” says co-author Nomita Chandhiok.

Source: Clinical Infectious Diseases

Where best to provide patient-centered HIV care: In the community or the clinic?

pDelivery of antiretroviral HIV treatment via

community-based clubs can reduce retention of patients in care, according to a new research study published in the open-access journal PLOS Medicine by Colleen Hanrahan and colleagues.

Despite advances in preventing and treating HIV infection, around a million people die from AIDS-related illnesses each year. To improve provision of very effective antiretroviral therapy to patients and thereby delay or prevent progression to disease, researchers are investigating methods of Differentiated Service Delivery (DSD) that make treatments available in ways that are more accessible to patients and can reduce issues such as stigma. A key question is how best to retain patients in care, ensuring consistent therapy and monitoring.

Hanrahan and colleagues did a randomized trial in Johannesburg, South Africa to compare retention of HIV patients in community-based adherence clubs with similar clinic-based clubs. The study involved clubs of P5SITIVE LIVING | 3 | JULY •• AUGUST 2019

25-30 patients meeting in a community venue every other month for counselling, medication pick-up, and screening for tuberculosis, as compared with those meeting in a clinic-based venue. Although community-based clubs are intended to be more convenient to patients and reduce pressure on clinics, as judged by the trial’s primary endpoint 52 percent of patients were lost from community-based care over 2 years, as compared with 43 percent lost from clinic-based care. Missing a club session was the most common reason for loss from care. As part of the study, patients lost to care were returned to standard clinic-based care, and health outcomes were similar in the two groups.

Source: www.PLOS.org

‘Stepped’ treatment reduces drinking in patients with HIV

pPeople with HIV who drink too much

were more likely to reduce drinking after undergoing an approach to care known as integrated stepped alcohol treatment, according to a Yale-led study.

The finding supports greater use of this treatment model in HIV clinics to improve outcomes for patients with both HIV and drinking problems, the researchers said.

Stepped care is used to treat some patients with chronic diseases such as hypertension and depression. It entails the use of different treatments that are “stepped up,” or increased in intensity over time, in response to patients’ needs. Prior to this new study, little research had been done to evaluate the impact of stepped care for patients struggling with alcohol use disorder, and none had been conducted in HIV treatment settings, the researchers said.

The research team recruited 128 individuals from one of five Veterans Affairs-based HIV clinics. They randomized the patients into one of two groups—those given integrated stepped alcohol treatment and an equal number receiving treatment as usual.

The stepped-care patients were offered evidence-based treatments, including medication, motivational therapy, and specialty care at either an outpatient or residential treatment facility. By comparison, the treatment-as-usual patients were referred to specialty addiction treatment at the VA at the discretion of their HIV clinician.

At the end of the study period, the researchers found that patients who received integrated stepped care fared better overall. After 52 weeks, stepped-care patients had fewer heavy drinking days, drank less per drinking day, and had more days of abstinence, the researchers noted.

“We saw overall improvements in drinking,” said Jennifer Edelman, lead author. “We also found improved HIV outcomes at the 52-week mark.”

The improvements in patients’ HIV status were presumably associated with the reduced alcohol use, Edelman noted. “Over time, the patients receiving integrated stepped care showed decreases in alcohol use and a higher rate of undetectable HIV viral load, likely related to improved HIV medication adherence,” she said.

The study results support the expanded use of integrated stepped care for alcohol misuse in settings where patients are already being treated for HIV, the researchers said.

Source: The Lancet HIV

For many women living with HIV, daily survival takes precedence over viral suppression

According to scientists who study women infected with HIV, statistics often paint an impressionist view of the lives of these women that misses the granular detail that tells the real story. The imprecise big picture is that most of this population is doing a good job at suppressing the virus, but facts gathered on the ground show that many women struggle with issues of daily living that can make taking a pill to keep HIV at bay difficult.

In JAMA Network Open, researchers say that while a majority of the 1,989 HIV-positive women they have been studying since 1994 have been able to control their virus—often on and off—challenges such as mental health, unstable housing, and lack of social support constitute ongoing barriers to effective and sustained viral suppression.

“Survival is a priority over putting a pill in your mouth for a number of our participants, and that is the public health challenge we must address,” says the study’s first author Seble Kassaye of Georgetown University Medical Center.

“About a quarter of the women acquired HIV infection related to injection drug use, but that has become an increasingly less common cause of HIV transmission in the current era,” Kassaye said.

In this study, the researchers took a longitudinal look at how well each participant kept their virus in check, and if they had trouble doing so, why? Each person was interviewed and had a blood draw every six months to establish viral levels.

p

P5SITIVE LIVING | 4 | JULY •• AUGUST 2019

Specific levels indicated the virus was well controlled, or uncontrolled—a condition called viremia.

The researchers found that over 23 years of viral levels, 3 patterns or ‘trajectories’ were present: 29 percent were at a low probability for viremia, 39 percent were at intermediate probability, and 32 percent were at high probability. These superseded the usual cross-sectional or short-term analyses that are often provided to capture viremia outcomes at the population level.

More recently, between 2015-2017, 71 percent of women achieved sustained viral suppression, including 35 percent of the high probability of viremia group.

“So, the rosy picture is that 71 percent of the women achieved viral suppression, but the granular detail tells us that some women are doing very well with 89.6 percent of the women in the low probability of viremia consistently suppressed in the recent years, but others are still struggling to get to viral suppression,” says Kassaye.

While today’s HIV treatment is much less toxic than it used to be, and drug therapy is now suggested for anyone who is infected—and are therefore in much greater use—the barriers to daily therapy are real. The researchers found that women in the high viremia group were more likely to report depressive symptoms (54 percent), have higher levels of current illicit drug (41 percent) and alcohol use (14 percent), be less likely to have stable housing (66 percent) and were more likely to die prematurely (39 percent).

Source: www.gumc.georgetown.edu 5

A

UP of taboo

Clean Toys are Fun Toys

F

By Jaylene Acheson or adults, there’s no reason to stop playing or having fun; we just do it in the bedroom. Our imaginations can set the scene, but sometimes the action happens when the toys come out. Whether its a ride with a vibrator, or giggling from a whip, toys provide a more intense sexual experience and stimulation. However, sex toys need care and attention for you and your sexual partner(s) to have fun at play while also being safe.

To clean your sex toys properly give them a bath! According to sex educators Janet Hardy and Donnie Easton, the best home solution is washing any toy that is silicone, metal, or plastic, in antibacterial soap, then finishing with a half-hour soak in 1:9 parts regular household bleach and water. If you are using it solely for one person—you or your partner—there is less of a worry (if you both have been tested) about the risk of transmitting STI’s. However, re-using dirty toys can let bacteria into your system, which probably isn’t your idea of a fun time. The mixture of warm water and antibacterial soap should provide enough of a bath for your toys, though going the extra mile to sterilize them also helps.

If you share your vibrators and dildos, one way to keep them from transmitting an STI is to use them with a condom. Although sex toy companies have upgraded the quality of their silicone products over time, silicone lubed condoms do not go well with some silicone toys, as it can wreck the surface of the toy. Spot testing to see if any of the silicone lube gums up is a way to see if it is safe.

Whips, floggers, and paddles are known for making direct, sometimes forceful, contact on the skin. Though they are not necessarily used for penetration, these toys may still carry bacteria

that arise if the skin breaks. Wooden toys that are safe to use penetratively need to be varnished with a medical grade polymer, as natural finishes wear away with use. Varnished wooden toys, like a paddle or cane, just need a soapy scrub finished with rinse of hydrogen peroxide for extra sanitation.

Ropes are a popular toy for bondage. Though there is less of a risk with them as they don’t usually cut skin, they still can get dirty from holding close contact to skin and, if you are playing hard enough, sweat. The popular Twisted Monk rope company explains different ways to care for different rope materials. For all ropes, cleaning starts with a gentle washing cycle while the rope is in a mesh bag.

For hemp rope, with the amount of moisture it holds, leave it to dry for a couple of days; for silk, bamboo, and cotton material, a bit of a stretch helps keep the form of rope while it’s drying.

Now not only do you know how to play, but you can play safe! Remember, toys do not have to be shared if you are not comfortable doing so. The proper way of sharing your sex toys will be communication of what protection has taken place. Are the toys sterilized? Is there going to be a condom used? Yes? Then by all means, have fun exploring. 5 Jaylene Acheson is a sex coach who works with individuals and couples towards a fulfilling sex life through sexuality empowerment workshops. Find her on Instagram and Facebook: @femmeforth.

P5SITIVE LIVING | 5 | JULY •• AUGUST 2019

HEALTH CLINICS Good for your body, Good for your soul!

To BOOK your appointment email clinic@positivelivingbc.org or call 604.893.2203

Health & Wellness services are FREE for Members of Positive Living BC

BIO ENERGY HEALING

MASSAGE THERAPY

NATUROPATHIC MEDICINE

REFLEXOLOGY

REIKI

TAI CHI

THAI YOGA MASSAGE

YOGA THERAPY

The Alcohol Dialogues: Moderate Drinking

In

By Brandon Laviolette and Glen Bradford

February, Positive Living led a forum on moderate drinking and HIV. The forum began with a talk titled ‘Let’s talk about Alcohol’ by Lindsay Killam, a social worker with Rapid Access Addictions Clinic at St. Paul’s Hospital. The presentation used current research to outline the physical and mental health effects of moderate to excessive drinking.

The goal was to get our audience to think about how alcohol affects individuals and our communities, including people living with chronic health issues like HIV, diabetes, and hepatitis. After the presentation, the audience broke out into small groups. To get the conversations going, each participant was given discussion questions and ‘Canada’s Low-Risk Alcohol Drinking Guidelines’ brochure, which suggests ways to reduce drinking risks.

From these group discussions, we learned that our members are often challenged by alcohol use in the community. Because alcohol is used as a social lubricant, it can be difficult to establish meaningful relationships if alcohol is a continuous part of relationship building.

SAFE DRINKING TIPS 9Set a limit for yourself and stick to it 9Drink slowly. Have no more than 2 drinks per 3 hours 9For alcoholic, have a glass of water 9Eat before and while you are drinking 9Women: 10 drinks per week, with no more than 2 drinks per day 9Men: 15 drinks per week, with no more than 3 drinks per day 9Have 1 non-drinking day every week to minimize tolerance and habit formation.

Some people suggested drinking is pervasive with high level of peer pressure to drink at social events while others said this is not a big problem. However, peer pressure is difficult when you are living in or trying to escape a cycle of addiction. Some commented that they would like to see more alcohol-based discussion groups that are not Alcoholics Anonymous-specific or abstinence based.

Alcohol can be a helpful part of socializing, but it can get away from us too. Excessive alcohol use has consequences. Hangovers can be painful; spending your weekends in bed trying to work through it can lead to depression and the cycle of drinking and depression may continue. For long-term PLHIV, old toxic antiretrovirals and HIV imbedded in the body have taxed their livers.

We must keep our communities strong; to create safe spaces, regardless of how we cope with our social stressors. So-called safe places such as Pride and other gay events are sponsored by alcohol.

Creating a smaller, non-alcoholic Pride event has been successful for people disinterested in the excessiveness of Pride weekend.

The term moderate varies for different people. Drinking standards are just guidelines. It is up to individuals to consider the factors most important to them when deciding what moderate consumption is for them. Our forum event indicated that this dialogue must continue. Canada’s Low-Risk Alcohol Drinking Guidelines lists suggested tools to reduce drinking risks. These guidelines can be found at www.healthydrinkingbc.ca. 5

Brandon Laviolette (r) is Health and Wellness Coordinator at Positive Living Society of BC. Glen Bradford (l) is Director of Programs and Services at Positive Living Society of BC.

P5SITIVE LIVING | 7 | JULY •• AUGUST 2019

Dementia and HIV Signs you need to watch for

By Wayne Campbell

HIV

-associated neurocognitive disorders have been gaining attention recently, especially at a time where aging and brain function are at the forefront of many HIV-related discussions in academic and medical meetings. The brain is a complex organ. It controls every function in our bodies and allows us to think, see, feel, touch, hear, smell, and move. The brain and the spinal cord make up the central nervous system (CNS).

While we do not know exactly how it happens, scientists believe that HIV enters the central nervous system within the first few weeks or months after a person gets HIV. Afterwards, the virus can lie hidden and inactive in the brain for a long time. Studies have shown that the earlier people start HIV medications, the less likely brain cells are to be damaged.



PLHIV often wonder: Is it HIV, aging, or is it something else? 

HIV can damage certain sections of the brain, causing mild cognitive (thinking) problems. This can include difficulty concentrating, confusion, and memory loss. However, this generally does not happen unless a person has had HIV for a long time, has not been taking HIV medications, or has been living with a very high viral load. Over time, these cognitive problems can lead to more severe HIV-associated dementia.

One such disorder is HAND, or HIV-associated neurocognitive disorders. HAND is a term that encompasses three separate

conditions relating to HIV and cognitive impairment, ranging from mild (ANI) to more severe (HAD): Asymptomatic Neurocognitive Disorder (ANI), Mild Neurocognitive Disorder (MND), and HIV Associated Dementia (HAD).

Recent estimates show that cognitive impairment affects many HIV-positive patients, from 15–50 percent. However, the demographic of PLHIV has changed in the last decade (e.g. larger populations of older PLHIV) and with that, there may be an increase in risk factors that have altered how many patients are affected with some degree of cognitive impairment.

PLHIV often wonder, “Is it HIV, aging, or is it something else?” The diagnosis of HAND can be difficult since it can share symptoms with other medical conditions. In order to diagnose HAND, your doctor must rule out other illness which can cause cognitive impairment such as depression, issues relating to age, opportunistic infections that affect the brain, and conditions such as diabetes and hepatitis C co-infection. Your doctor might order an MRI to look for changes in the brain tissue or for other causes of cognitive impairment, check the fluid surrounding your spinal

P5SITIVE LIVING | 8 | JULY •• AUGUST 2019

cord and brain (called cerebrospinal fluid), and perform various neuropsychological assessments that will help them to rule out certain conditions and determine the presence, type, and severity of the impairment you may have.

The cause of HAND remains unclear to researchers, but we do know that it is likely due to multiple factors including damage caused by the virus itself and the inflammation triggered by the body’s defenses being on high alert—the immune system remaining in a switched on state for a long period of time. HIV enters the central nervous system shortly after initial infection and can establish infection within certain CNS cells.

Experiencing the symptoms of an HIV-associated neurocognitive condition can be confusing and even frightening. One of the most important things you can do is ask for help. The initial signs of HAND can be difficult to notice. If you are experiencing memory problems or your family and friends comment on changes in your behaviour or coordination, it is a good idea to start keeping a log.

Note any problems you are having in regards to your: balance or coordination; vision; memory; concentration or attention span; ability to finish tasks; getting lost in familiar places; forgetting telephone numbers, or basic math.

It will be important to bring this log to discuss with your health care provider as soon as possible. Even if you feel there is an explanation for the problems, it is important to tell your provider.

Do not be afraid to start a conversation with your doctor, family, or close friends about any symptoms you may be experiencing that involve your thinking, behaviour, or coordination. Seeking medical help early to find out what is causing the problem and starting treatment, if needed, is critical. People with severe HAND may need to go to a fulltime assisted living facility for their own safety and well-being.

Taking effective HIV drugs to keep the virus under control is also necessary. However, people with central nervous system problems may need extra help remembering to take their medications.

This is where support from family and friends may come in. You can also ask your health care provider and local AIDS service agency for help. Finally, taking your HIV drugs regularly may be the best way to treat and prevent HIV-associated brain problems.

If you are supporting somebody with emotional or mental health problems, there are considerations to make. As a family member, partner, or friend, you are an invaluable source of support for people experiencing mental health problems. However, to provide this support effectively, you need to make sure that you are looking after yourself and not neglecting your own mental and physical needs. Accept that mental health is just as important as physical health and that the person impacted cannot just ‘snap out’ of their mental health problems; talk to your acquaintance about what they are going through; take an interest in their physical and mental

TIPS FOR COPING WITH COGNITIVE IMPAIRMENT 9 If you are coping with cognitive impairment, here are some tips that may make your life easier.

9 Organize your living space in a way so that items and possessions are easy to find 9 Perform tasks that require more effort and concentration at times when you feel best. This may be first thing in the morning, on weekends, or may change day to day 9 Keep a day planner or appointment book to keep track of all your commitments and tasks. To-do lists can be helpful in keeping you on track of all your daily activities 9 Keep up with your medical appointments—your doctor can be your best ally in helping you treat any cognitive impairment you may be experiencing 9 Take your medication(s) as prescribed 9 Avoid alcohol or other substances as a coping mechanism—it can worsen the cognitive impairment or interact with medications 9 Don’t be afraid to ask for help and support when you need it 9 Keep up with the activities you enjoy, social contacts, and have fun! It will keep you engaged and enjoying life. Take mental breaks when you need them, especially after more challenging tasks.

health; provide encouragement to seek help and treatment and to remain on it; understand that mental health problems can be debilitating and that recovery can take time and is likely to involve both good and bad periods; ask before making plans—accept that activities, which you think may be pleasurable, can seem overwhelming at first to a person who is struggling. Even though you may know that it will be good for them to start doing something, you may need to be patient as well as persistent. 5 Wayne Campbell is the Treatment Outreach Coordinator at Positive Living BC.

P5SITIVE LIVING | 9 | JULY •• AUGUST 2019

Medical assistance in dying Preparing for end of life: Part 3

by Glen Bradford Content warning: The purpose of this article is to give people a window into the lived experience of implementing and participating in a medically assisted death.

In

the early days of HIV/AIDS, medically assisted dying was not legal, driving people underground to end their own lives rather than waiting to die a horrible natural death. This has changed and now a planned death is free and legal in Canada under very specific conditions.

Medically assisted death is only available to those people who are 18 years of age or older, are deemed capable of making decisions about their own health and who have a medical condition that is incurable.

To be considered as having a grievous and irreversible medical condition, the person must meet all of the following criteria: have a serious illness, disease or disability; be in an advanced state of decline that cannot be reversed; suffering unbearable physical or mental pain from illness, disease, or disability that cannot be relieved under conditions that you consider acceptable;

be at a point where your natural death has become reasonably foreseeable; this takes into account all of your medical circumstances and does not require a specific prognosis as to how long you have left to live Those who suffer from a mental illness or psychological condition and meet the above conditions may request assisted dying, but they’ll have to undergo an in-person capacity assessment by a psychiatrist and “irremediable” and “foreseeable natural death” conditions for approval are hard to get.

Two independent people must witness a written request.

No one involved can be a beneficiary of the dying person’s will or receive any financial or material benefits from the death. In palliative care the request form is provided by a health care worker. My friend and I were the two people to witness our friend’s request. Despite our strong political beliefs that this was an important legal right, we were also aware we were participating in signing the end of our friend’s life. That cognitive dissonance was a challenge we had to quickly get past with someone other than our dying friend. We knew we would be following this to its

P5SITIVE LIVING | 10 | JULY •• AUGUST 2019

end, and it would be our job to support our friend’s emotional process; it was not his job to support us.

Two doctors or nurse practitioners who specialize in end of life events must provide an opinion that the dying person meets the above conditions and there is a 10-day “period of reflection” to be sure of one’s decision before the death. A person must always have the mental capacity to consent right up to the moment of death and can’t give an advanced directive to die or appoint a substitute decision-maker. However, if it is apparent the person may not have their cognitive faculties by the tenth day, the medical practitioner can shorten the ten days to something sooner. That was the case with our friend.

The process is not the same everywhere. Not all health care providers will be comfortable with medical assistance in dying and some hospitals, like St. Paul’s Hospital, have waivers based on religious reasons, preventing their physicians or nurse practitioners from performing such duties. Despite these waivers, all health care providers have an obligation to assist their patient in navigating the health care system, which includes connecting patients to appropriate outside medical staff who can complete the forms and perform this type of event.

If palliative care in the home is not possible and medically assisted death in the hospital is not possible, what do you do?

A person can stay in the hospital until the time of their death and then be transferred to an alternative, medically appropriate space or, if possible, home to die on the day of their choosing.

That is what we did for our friend.

The ratio of nurses for patients at the Palliative Care Ward of St. Paul’s Hospital is much higher than other wards within the hospital. The nurses are trained to help the patient, as well as their family and friends. The rooms are larger to accommodate visitors and privacy. It is tranquil without being morbid.

Our nurses helped us find practitioners to approve the request, arranged for the practitioner to be at the home to perform the medically assisted death, and made arrangements to transfer our friend to his home to die on his last day. A form is completed by the patient’s physician and sent to the funeral home before the death. This allows a funeral director to remove a body from a home without pronouncement of death.

The transfer company was amazing. There was no judgment.

They were respectful and supportive of what we were doing. If you are planning to transfer someone to their home, keep in mind gurneys are big and narrow hallways with sharp turns to get into a room can make the process physically challenging. We needed to switch to a wheelchair to get into the apartment. The family was waiting for us in his home.

There are two ways to perform a medically assisted death.

Medically assisted “clinician-administered” medical assistance in dying is when the medical person is administered a combination of drugs through an IV needle. “Self-administered” medical assistance in dying is when the patient takes the prescribed pills to end their life with the medical person present. Our friend chose to take the injection; he didn’t want his last act to be swallowing another pill.

We had time to visit with our friend before a nurse came to the home to explain the process and insert a “butterfly” needle for the injections. One nurse explained what she would do and then they both left the room. The family said their last goodbyes, my friend said he was ready, and I called the nurses back into the room. He was asked for the last time if he knew what he was doing and if he still wanted it to happen. He said yes, the nurse slipped three consecutive needles into the butterfly, his eyes closed peacefully, and he was gone.

If a person dies in British Columbia, the death must be registered with the Vital Statistics Agency. A Medical Certificate of Death is completed by a physician or nurse practitioner within 48 hours. The medical certificate of death is forwarded to the funeral director who will register the death. Sometimes, the form is left on the body for the funeral home by the medical staff person who assists with the death. The funeral director can then issue a death certificate and burial permit.

We called the funeral home and said we were ready. They arrived in fifteen minutes. When a person dies, their physical body dramatically changes, and it is quick. I wrapped my friend in the sheet he was sitting on until the funeral home people arrived. I was thankful we had the family wait in a separate room while they transferred the body onto a beautiful red blanket on the gurney. It is not an easy thing to do or see. Once on the gurney, the family came in to say a last goodbye and returned to their room. With some difficult maneuvering the funeral home staff then took him away.

Participating in a medically assisted death in the home is not for everybody. No matter how much the medical profession supported us in navigating our way through the process; it was still physically challenging and emotionally traumatic. 5 Glen Bradford is Director of Programs and Services at Positive Living Society.

P5SITIVE LIVING | 11 | JULY •• AUGUST 2019

A Vaxx in our time A successful vaccine may be our best shot against HIV stigma

By R Paul Kerston

An

HIV vaccine may be on the horizon, and there is hope that it will not only work against the virus but against the prejudices, discrimination, and stigma still attached to HIV. There are vaccine implications for PLHIV: When health conditions are transmissible between individuals, there is concern for other persons, including partners and loved ones.

A vaccine against HIV has been a priority for researchers and affected individuals since the 1980s. For years, however, the most immediate issue was saving lives and improving the quality of those lives. Issues remain, but those initial goals have in large part been achieved over the almost four decades of this global epidemic. Still, much more needs to be accomplished, particularly in locales where resources are scarce. continued next page

P5SITIVE LIVING | 13 | JULY •• AUGUST 2019

The Joint United Nations Programme on HIV/AIDS (UNAIDS) goal is 90-90-90 90 percent of all PLHIV diagnosed, 90 percent of those diagnosed receiving sustained antiretrovirals, and 90 percent of all people receiving antiretrovirals reach and maintain undetectable levels of HIV in their blood. With these objectives reached, the epidemic can gradually be reduced so that its spread is virtually halted, given that a person who remains undetectable has virtually no chance of spreading the virus in the most common manner, through sexual transmission (a rate of 100 percent effectiveness in ‘undetectable’ individuals was reported from the PARTNERS 2 study in 2018).

The original UNAIDS goal was to achieve 90-90-90 by the year 2020. Unfortunately, there are barriers to reaching this goal. In some locales, available resources are limited, for example where effective antiretroviral medications (ARVs) may be difficult to come by, so existing prevention tools are unavailable or underutilized.

Providing prevention tools doesn’t mean everyone will use them: when properly used, condoms are considered well over 95 percent effective; when undetectable, HIV is untransmittable, yet the epidemic persists. For this reason, greater numbers of tools are being considered, studied, and gradually implemented. Just in this century, the use of pre-exposure prophylaxis (PrEP) was one opportunity that came online to offer protection to HIV-negative persons using proven antiretroviral medications. This is getting greater and greater uptake but is far from widespread, globally.



No vaccine is considered perfect, making development of a 100 percent effective vaccine unlikely.

For myriad reasons, not everyone always uses condoms, wants PrEP or is consistently able to take ARVs. So, we come to this long-studied possibility that a vaccine might get developed. Various ideas have been tried but, mostly, these have not been shown effective. It took a long while before one very large trial in Thailand, RV144, came up with a vaccine possibility which, unfortunately, didn’t show that much promise. The study included over

16,000 people from 2003 to 2006 and showed statistically significant results of 31 percent protection for those vaccinated. These results proved both promising (it was the first vaccine trial to show significant positive results) and controversial (due to various methods of analysis, and reporting anomalies that occurred). What it showed, though, was that the concept could work.

Researchers believe they understand the basics of what is needed for a vaccine and how the eventual product must interact with the virus to be effective. But finding the combination of elements that succeeds in creating this is the trick. Unlike the flu vaccination, where researchers develop a vaccine based upon strains found in other regions, an HIV vaccine has several challenges.

For one thing, different strains of HIV exist and are in different geographic regions. Another long-known issue is the ability of the virus to mutate. With current ARVs taken consistently, mutations haven’t remained as much a concern for HIV-positive people. For a vaccine, however, it is a problem. Further, the testing necessary for both efficacy and safety requires time.

No vaccine is considered perfect, making development of a 100 percent effective vaccine unlikely. The best science for the 90-90-90 goal is thought to be a combination of antiretroviral-induced undetectability, greater PrEP uptake, and a future vaccine.

To explain medical studies a bit, picture a population that needs a product, but only if safe and effective. Early studies are done in test tubes (in vitro). When components appear successful, later studies are often conducted on animals known to have enough similarities to humans in specific ways. When successful, small human studies are begun seeking to establish that there is no harm from this potential product and that it shows the promise of working in humans at various dosages. These are Phase I studies.

Once a Phase I study is completed, a Phase II study helps further determine the amount of product that’s both safe and effective: one wouldn’t want to receive a dose that works but which provides intolerable side effects. If all this succeeds, a Phase III study begins that often involves thousands of people, frequently in many places and among different populations.

This is the level of study that can lead to the approval and licensing of a product, which is what gets it to our pharmacies.

All of this takes time but being safe and effective makes it worthwhile. And, sometimes, overlaps of the phases occur.

P5SITIVE LIVING | 14 | JULY •• AUGUST 2019

The 10th International AIDS Society Conference on HIV Science (IAS 2019) will be held in Mexico City from July 21st to 24th and there is a presentation programmed offering long-term results from the APPROACH study, which was scheduled to complete in April of this year, though interim results were reported in 2018, both at IAS and in The Lancet journal. It is evaluating the safety and ability to produce an immune response with a combination of vaccine elements.



As people learn that HIV is more and more preventable, there comes the long-held hope that stigma will diminish.

Although only a Phase I/IIa study, the components in APPROACH appear hopeful and it is expected that these components may be used in an upcoming Phase III trial.

There were a total of 393 men and women between ages 18–50 who were randomized into active drug and control groups at five sites across the US, and in various places in Africa and Thailand. Last year’s interim report showed this Janssen-developed vaccine demonstrated an approximate 80 percent immune response against a variety of different strains of HIV. The components were well tolerated by participants.

A Phase IIb/III trial is ongoing in South Africa, with 5,400 anticipated enrollees, testing a vaccine expected to offer results within two years (HVTN 702); and there is a current Phase IIb trial expected to enroll 2,600 young women in sub-Saharan Africa (HVTN 705) testing components that are expected to lead to a Phase III trial. The trials differ: 702 is working from newer components, originally developed for the RV 144 study, specifically intended for a type of HIV in the region of testing; 705 combines elements intended to be effective against a wider variety of different HIV strains. HVTN 705’s results are scheduled for late 2021, with interim reports likely.

If proven safe and effective, these studies could lead to scale-up efforts involving even more testing, bringing a vaccine one step closer.

The expected Phase III vaccine trial will involve healthy volunteers from high-risk groups of persons between ages 18–60. It will take at least two years for the entire course of a single individual’s trial, and the full worldwide trial will require even longer because of the size of the test population; not everybody begins on the same day. (Specifics about the components and the methodology of testing in this trial are proprietary issues that remain under wraps currently.)

Now, if antibodies (natural human defenses) to HIV develop through vaccination, typical initial HIV tests will show a false positive. This can be compensated for in studies through careful instructions to participants and appropriate follow-up where testing is required ( job applications, immigration, etc.). However, in the real world?

This is yet to be fully worked out.

So, what would a Phase III vaccine study mean for BC residents living with HIV? It means that like all good things, we must wait. Trial results, and the potential risks and benefits, will not be known until the study concludes.

A Phase III trial is nevertheless good news as it brings closer the potential for a new tool in the fight against the global issue of HIV. As the population gradually learns that HIV has become controllable, as we continue to approach the 90-90-90 goal, and as people learn that HIV is more and more preventable, there comes the long-held hope that stigma will diminish. Will it go away completely? That will take time; there is hope that with greater public awareness of major advances in the field, stigma will gradually melt away and allow PLHIV to feel more comfortable approaching and being with others, seeking relationships, and knowing that they are able to help educate and protect the people they care about. This, alone, would be a huge step.

A vaccine could go a very long way toward helping bring this hope about. 5

R Paul Kerston may bodily exist in Buenos Aires, but his heart remains in Canada!

P5SITIVE LIVING | 15 | JULY •• AUGUST 2019

Know Your Drugs What you should know about generic and brand name ARVs

By Katherine Lepik and Hesham Ali

What are brand name drugs and generic drugs?

A “brand name” drug product is the original (first marketed) version of a medicine. When a new drug first comes to market, there is a period of several years when the company that developed the medicine is the only supplier of the brand name drug product.

After patent protection ends, other companies can make and sell a “generic” version of the drug. Generic medicines contain the same amount of active drug ingredient as the equivalent brand name product. Generic medicines also usually have very similar non-medicinal ingredients (such as fillers, binders, and coatings), and often have a similar tablet or capsule shape and colour.

Do generic drugs have the same high quality as brand name drugs?

Yes. Canada has very high standards for medication quality.

Requirements are the same for brand name and generic drugs. For a medicine to be licensed for sale in Canada, it must meet Health Canada’s standards for active drug and non-medicinal ingredients, production process, and manufacturing facilities. Generic medicines must also meet Health Canada’s standards in “comparative bioavailability studies,” which means they must deliver the same effective dose of drug as the brand name product.

Why has British Columbia switched to the generic version of some antiretrovirals?

The BC Centre for Excellence in HIV/AIDS (BC-CfE) Drug Treatment Program (DTP) provides HIV medicine (antiretrovirals) at no cost to all medically eligible BC residents. The BC-CfE administers this publicly funded program on behalf of the BC Ministry of Health’s PharmaCare program, in alignment with PharmaCare policies.

BC Pharmacare policy states, “When the same drug is made and sold by two or more manufacturers, PharmaCare will cover the less expensive version—the low-cost alternative.” If a generic version

of an antiretroviral medicine is available, the BC-CfE DTP provides the low-cost alternative. This helps maintain the DTP’s sustainability.

There are similar drug plan policies regarding use of generic antiretrovirals in most other Canadian provinces and territories.

How many people in British Columbia are using generic antiretrovirals?

Generic antiretrovirals have been used in BC for about two years.

During that time, more than 5,000 people have received a generic HIV medication. As of April 2019, approximately half of the BC residents who receive antiretrovirals through the BC-CfE DTP are taking at least one generic product.

What is the process for switching from brand name to generic antiretrovirals?

When a person first switches from a brand name to a generic antiretroviral, the pharmacy provides a product-switch information sheet at the time of dispensing. Switches between different generic versions of the product are sometimes necessary due to product availability or pricing. To mark a switch between generic versions, the pharmacy places a sticker on the medicine bottle that reads: “Note new brand, new appearance.” New prescriptions for antiretroviral medications with a generic alternative are automatically filled with the generic product.

May a person continue to receive the brand name product if they would rather not switch to the generic version?

Switching back to brand name product is only an option in safetyrelated situations—where there is a documented adverse reaction (see below). As for all other drugs funded by BC PharmaCare, the BC-CfE DTP does not cover the cost of the brand name product if a low-cost generic version is available.

P5SITIVE LIVING | 16 | JULY •• AUGUST 2019

What if a person has side effects after switching to a generic antiretroviral? What is the process for requesting an alternative brand?

As with any new medicine, it may take a few days for a person’s body to adjust to a product switch. Mild side effects, such as stomach upset, will often improve with time. Although brand and generic versions of a product are very similar, some people can have side effects or tolerability issues, which may be due the differences in product formulation (such as different binding agents or fillers). In BC, the safety of generics is closely monitored.

Fewer than one percent of people taking generic antiretrovirals have reported tolerability issues.

If you experience ongoing effects that are possibly due to a generic antiretroviral, see your doctor or nurse practitioner. It is important to diagnose the cause of the symptoms to rule out any other medical conditions that could need treatment. If an allergic reaction or intolerance to a generic antiretroviral is suspected, your healthcare provider can send an application to the BC-CfE DTP to request a different version of the product. To help the BC-CfE monitor drug safety, and to support the need for an alternate product, this request must include the details of the reaction or tolerability concern. In keeping with PharmaCare policies, the first step is to try a different generic version of the drug. If none of the available generic alternatives are tolerated, coverage of the brand name antiretroviral will be considered. Once the request for alternate generic or brand name product has been approved by the BC-CfE, the pharmacy is able to specially order this medicine.

Which generic antiretroviral products are currently available in BC, and are more generics expected in the future?

In BC, abacavir, atazanavir, efavirenz, lamivudine, nevirapine, tenofovir disoproxil fumarate and zidovudine are available as generics,

including several tablets with combinations of these drugs (such as generic Atripla, Kivexa, and Truvada). Over the next few years, as drug patents expire, the number of generic antiretrovirals will likely increase.

Will newer antiretrovirals be covered by the BC-CfE Drug Treatment Program in the future?

When a new antiretroviral drug comes to market, it is carefully reviewed by a panel of advisors that includes HIV experts and community members. This BC-CfE committee considers all the evidence about the drug’s effectiveness, safety, and impact on DTP program sustainability. Drugs which are expected to provide a significant benefit will be considered for coverage by the BC-CfE DTP.

Some of the drug ingredients in once-daily combination tablets are available as generics.

Will some single tablet medicines be switched to two pills (a generic pill plus a brand name pill)?

At present, there is no automatic substitution of generics unless the drug products are the same (same drug ingredients, same drug strength, same number of pills). In the future, publicly funded programs will continue to look for ways to remain sustainable while continuing to provide safe, effective treatments. Any changes in policy will be communicated to healthcare providers and people living with HIV. 5 Hesham Ali is a Peer Navigator at Positive Living Society of BC. Katherine Lepik is a Research Coordinator at St. Paul’s Hospital in Vancouver, BC.

P5SITIVE LIVING | 17 | JULY •• AUGUST 2019

Giving Well help form an HIV community that was coherent and responsive.

PL: Tell me more about ACT UP! Vancouver.

JA: As one of the first organizers of the original Pride parades in Vancouver, I realized many (people in the) public and media didn’t understand HIV or LGBTQ+ people. Since then I’ve tried to do my part.

I’m not able to contribute a lot financially, being a retired person, but I think it’s important that everybody contribute to make the Society work for all members.

For

this edition of the Giving Well, I sat down with Jeff Anderson, a long-time volunteer, activist, and donor to the Positive Living Society of BC.

Positive Living: Tell me about yourself!

What’s important to know about you?

Jeff Anderson: I have been a member of Positive Living for over 20 years. I served as a Director and Treasurer for from 19972003, and have continued to volunteer ever since. My first HIV activism was with ACT UP! Vancouver (AIDS Coalition To Unleash Power!) when we blocked Georgia Street during the 1996 World AIDS Conference here. That’s when I realized the need and benefit to HIV community activism—to

PL: What prompted your decision to get involved with Positive Living BC? Was there a specific moment or person who led you to get involved?

JA: I wrote articles for the first Friends for Life newsletters. It was there that I found out about the Positive Living Healing Retreats.

In September 1996 a peer encouraged me to go to a retreat on Bowen Island. We travelled by sailboat from Coal Harbour to Bowen Island. Someone spoke to me on the boat about using my degree in non-profit administration by joining the Positive Living BC’s board of directors. In February 1997, there was an EGM. I was still recovering from the serious illnesses that so many of us endured. I had a fever and open sores on my face, but I was elected to the board and, a couple weeks later, elected treasurer.

PL: Why is giving back to your community important to you?

JA: This is one of the few organizations that include our members in the larger P5SITIVE LIVING | 19 | JULY •• AUGUST 2019

A DONOR PROFILE

By Jason Hjalmarson

community. There are AIDS Service Organizations in the classic sense, who provide a service to clients. We are a member-driven, consumer organization.

This encourages us to participate in this organization, at meetings, at the AGM, and to grow programs which are by, for, and about us, whereas we had been disallowed to voice or vote at top-down health organizations and AIDS Service organizations. Now, with government cutbacks and changing priorities, it’s increasingly important to sustain an organization that gives people a voice and a home. A lot of people who are marginalized, people from all walks of life come to learn and share—at workshops, on-line, or in the lounge over a cup of coffee. Members feel like they can be themselves, not have to hide their diagnosis. Someone might ask about your treatment regimen, or they can find out more about their own treatment regimen by speaking with a peer, connect for dental care, or the other complimentary health services offered. That’s what makes this organization vital not just to urban centres, but the entire country. 5

Jason Hjalmarson is Director of Fund Development at Positive Living BC.

By Tom McAulay

The more things change….

I

searched for an article that described a strategic planning process that Positive Living Society of BC had done in the past, and what did I come across but a piece of my own work that I had totally forgotten I had written. From issue 84, June/July 1995 “Towards 2000: BCPWA envisions the Future.”

“As the face of HIV disease and AIDS changes – so must our goals and strategies. Since 1986, the British Columbia Persons with AIDS Society (BCPWA) has been a key player in the lives of persons dealing with the day-to-day realities of HIV and AIDS. We are now Western Canada’s largest AIDS organization, with a membership of over 2200 individuals.

Eight months ago, we embarked on a remarkable journey to delve deep into the realities facing those of us living with HIV disease and AIDS. Our goal was to develop a Strategic Plan for BCPWA. The membership, key volunteers, Board of Directors and staff were called upon to offer their advice and expertise to chart a map for the future.

AS we move towards the year 2000, we face tremendous challenges and opportunities.

The challenges are onerous. Many PWA’s are living in abject poverty at a time when massive cuts are occurring to provincial health and social services budgets. New waves of HIV infections are occurring in marginalized communities, in particular among women, intravenous drug users, (Indigenous) peoples and young gay men. Bigotry and discrimination directed towards persons living with HIV disease and (sic) remains an unfortunate reality that we must address.

The coming years hold many exciting opportunities, as well. Next year, Vancouver will host the 1996 International AIDS Conference.

Over 16,000 researchers, activists and persons living with HIV/AIDS are expected to attend. We will have the opportunity to raise important issues, with the international community, about treatments, research, human rights and many other issues facing our community.

Some of the issues BCPWA faces are organizational; such as the traditional lack of sufficient financial resources to

operate; while others are emerging as new issues, such as the changing demographics of our membership.”

As Positive Living Society of BC moves into planning for our future in the 21st century, it is amazing to me that while much about with living with HIV in the medical context has changed, few of the social and systemic challenges have gone away–one might even argue some have gotten worse. We still have work to do. 5 Tom McAulay is Chair of Positive Living BC.

WHAT IS A STRATEGIC PLAN? A strategic plan is a “coordinated and systematic way to develop a course and direction,” says the Business Development Bank of Canada. Elements of this line of planning are used to consider the immediate future of an organization. This type of planning is useful when markets or business regulations change; in general, it’ s a good way for an organization to reassess its “motivation, costs, and means.” Elements of a strategic plan are: 9 An executive summary 9 A company description 9 A value statement 9 A SWOT analysis (strengths, weaknesses, opportunities, and threats) 9 Budget and operating plans 9 Detailed monitoring and evaluation methods.

Source: BDC.CA

P5SITIVE LIVING | 21 | JULY •• AUGUST 2019

The CheckUp Project: Time to focus on and learn from Inuit

In

an alarming trend, the Inuit youth of Canada are experiencing a disproportionate number of new diagnoses of sexually transmitted blood borne infections (STBBIs), with rates of chlamydia and gonorrhea 10 times higher than the rest of Canada. There are also growing concerns about the future rise of syphilis and HIV in this population.

In response, the Nunavut Board of Health and Social Services (NBHSS) has launched an Inuit-specific communication campaign, the CheckUp! project, that uses social media and marketing to change social norms around STBBI screening to reduce stigma and normalize testing in Nunavut. The program has proven to be effective at engaging and empowering Inuit youth and now, CTN investigator Dr. Alexandra King is teaming up with NBHSS and the Pauktuutit Inuit Women of Canada in Ottawa to enhance and scale up CheckUp! The new project will include a wholistic, arts- and land-based approach to health promotion, tailored to the unique cultural, spiritual, and community needs of the Inuit and will be expanded and implemented in other Inuit regions throughout Canada’s Arctic, known as Inuit Nunangat.

The research team behind the project includes Indigenous physicians, community research associates, and academic health researchers with combined extensive experience in sexual health and Indigenous health and wellness. The project is grounded by a deep respect for the cultural knowledge, traditions, and practices of the Inuit. The team will draw on Inuit societal values, known as Inuit Qaujimajatuqangit (IQ), and will ensure that IQ is appropriately incorporated into the project by including Elders, Knowledge Keepers, and other experts in IQ as part of the study team.

Several of the primary goals of the project focus on access to screening and care. These include normalization of testing by addressing attitudes and social norms around the use of screening services for STBBIs, including HIV, and reducing barriers to STBBI testing and improving linkages to care. These goals feed into another key aim of the project: to decrease the burden of STBBIs in the region.

Other goals include: Improving wellness and resiliency of Inuit youth using arts-based and land-based methods; fostering

By Sean Sinden

Inuit youth leadership in the planning of wholistic health promotion interventions; and expanding the CheckUp! project to other regions of Inuit Nunangat.

CTN Investigator Dr. Alexandra King holds the Cameco Chair in Indigenous Health at the University of Saskatchewan. 5 Sean Sinden is the communications and knowledge translation officer for the CTN.

Other Studies enrolling in BC CTNPT 030

Feasibility of crystal meth interventions among GBMSM BC Sites: St. Paul’s, University of Victoria

CTN 283

The I-Score Study BC site: Vancouver ID clinic

CTN 288

LHIVE Healthy — Online

CTN 292A

Development of a screening algorithm for predicting highgrade anal dysplasia in HIV+ MSM BC site: St. Paul’s

CTN 292B

Treatment of high-grade anal dysplasia in HIV+ MSM BC site: St. Paul’s

CTN 293

REPRIEVE Trial BC site: Vancouver ID clinic

CTN 299

Bone health in HIV+ aging women BC site: Vancouver ID clinic

Visit the CIHR Canadian HIV Trials Network database at www.hivnet.ubc.ca for more info.

P5SITIVE LIVING | 23 | JULY •• AUGUST 2019

For a full list of donors visit positivelivingbc.org

$5000+ LEGACY CIRCLE Peter Chung

$1000 - $2499 CHAMPIONS Paul Goyan Fraser Norrie Paul Gross Malcolm Hedgcock Joss De Wet Blair Smith Don Evans

$500 - $999 LEADERS Robert Capar Pierre Soucy Dean Mirau Stanley Moore Cliff Hall Michael Holmwood Emet Davis Rebecca Johnston Christian Denarie James Goodman Cheryl Basarab Brian Lambert

$150 - $499 HEROES Katherine Richmond Brian Yuen Len Christiansen Gbolahan Olarwaju James Ong Darrin Pope Jamie Rokovetsky Ross Thompson Mark Mees Mike McKimm Glynis Davisson Ralph Silvea Vince Connors William B Granger Maxine Davis Sergio Pereira Jean Sebastian Hartell Lawrence Cryer John Bishop Lorne Berkovitz Todd Hauptman Gretchen Dulmage Ronald Stipp Dena Ellery Bonnie Pearson Keith Stead Ken Coolen Michael Pangan

Alin Senecal-Harkin Elizabeth Briemberg Ross Harvey Jane Talbot Penny Parry George Schwab Susan Burgess Barry DeVito Ron Hogan Patricia Dyck Tom McAulay Wayne Avery Stephanie Tofield Glyn Townson Stephen French Rob Spooner Jeff Anderson Dennis Parkinson Edith Davidson Colin McKenna Patricia E. Young Larry Hendren Carmine Digiovanni

$20 - $149 FRIENDS Zoran Stjepanovic Ha Thu Nguyen Kirsten Bowles Sarah Chown

P5SITIVE LIVING | 24 | JULY •• AUGUST 2019

Colin McKay HansKrishna Von Hagen Joel Leung Sharon Lou-Hing Tracey Hearst Lisa Bradbury Andrea Reimer Catherine Jenkins John Yano Angela McGie Christine Leclerc Adrian Smith Heather Inglis Lisa Raichle Lindsay Mearns Tobias Donaldson Chris Kean Miranda Leffler Adrienne Wong Christopher Clark Jason Hjalmarson

To make a contribution to Positive Living BC, contact the director of development, Jason Hjalmarson.  jhjalmarson@positivelivingbc.org  604.893.2282

PROFILE OF A VOLUNTEER “Heather has been a stalwart addition to the editorial team. Her eagle eye for the tiniest grammatical error, her keen nose for inconsistencies in tone, and her astounding BS detector make our pages smarter, clearer, and most important, more engaging. I would be a wreak without her talent and perspective to lean on. “ Jason Motz, Managing Editor, Positive Living Magazine

*Heather G. Ross*

What is your volunteer history? What volunteer jobs have you done with Positive Living BC?

I’ve been a member of Editors Canada since 2012. I’ve just wrapped up three years on the Editors British Columbia executive where I was the chair of member services.

When did you start with Positive Living BC?

I met Jason Motz, Positive Living magazine’s managing editor, at the 2015 Editors British Columbia Christmas party and started copy editing for the magazine soon after.

Why did you choose us?

I am glad to contribute to a better quality of life for PLHIV. The magazine is interesting to edit because there’s so much variety issue to issue.

What is your favourite memory of your time as a volunteer with us?

Last year’s Gender 101 Workshop. Learning about the language of gender was interesting and important. As an editor working with language, I have a duty to identify and challenge bias in my work. I appreciate that Positive Living created a time and space for learning and discussion about this topic.

P5SITIVE LIVING | 25 | JULY •• AUGUST 2019

Where to find

HELP

If you’re looking for help of information on HIV/AIDS, the following list is a starting point.

For more comprehensive listings of HIV/AIDS organizations and services, please visit www.positivelivingbc.org/links

bA LOVING SPOONFUL

1449 Powell St, Vancouver, BC V5L 1G8  604.682.6325  clients@alovingspoonful.org  lovingspoonful.org

cAIDS SOCIETY OF KAMLOOPS

(ASK WELLNESS CENTRE) 433 Tranquille Road Kamloops, BC V2B 3G9  250.376.7585 or 1.800.661.7541  info@askwellness.ca  askwellness.ca

bAIDS VANCOUVER

1101 Seymour St Vancouver, BC V6B 0R1  604.893.2201  contact@aidsvancouver.org  aidsvancouver.org

bAIDS VANCOUVER ISLAND (Victoria)

713 Johnson Street, 3rd Floor Victoria, BC V8W 1M8  250.384.2366 or 1.800.665.2437  info@avi.org  avi.org

bAIDS VANCOUVER ISLAND (Courtenay)  250.338.7400 or 1.877.311.7400  info@avi.org  avi.org/courtenay

bAIDS VANCOUVER ISLAND (Nanaimo)  250.753.2437 or 1.888.530.2437

 info@avi.org  avi.org/nanaimo

bAIDS VANCOUVER ISLAND (Port Hardy)  250.902.2238  info@avi.org  avi.org/porthardy

bANKORS (EAST)

46 - 17th Avenue South Cranbrook, BC V1C 5A8  250.426.3383 or 1.800.421.AIDS  gary@ankors.bc.ca  ankors.bc.ca

bANKORS (WEST)

101 Baker Street Nelson, BC V1L 4H1

 250.505.5506 or 1.800.421.AIDS  information@ankors.bc.ca  ankors.bc.ca

bDR. PETER CENTRE

1110 Comox Street Vancouver, BC V6E 1K5  604.608.1874  info@drpetercentre.ca  drpetercentre.ca

bLIVING POSITIVE

RESOURCE CENTRE OKANAGAN 168 Asher Road Kelowna, BC V1X 3H6  778.753.5830 or 1.800.616.2437  info@lprc.ca  livingpositive.ca

bMCLAREN HOUSING

200-649 Helmcken Street Vancouver, BC V6B 5R1  604.669.4090  info@mclarenhousing.com  mclarenhousing.com

bOKANAGAN ABORIGINAL AIDS SOCIETY 200-3717 Old Okanagan Way Westbank, BC V4T 2H9  778.754.5595  info@oaas.ca  oaas.ca

bPOSITIVE LIVING

FRASER VALLEY SOCIETY Unit 1 – 2712 Clearbrook Road Abbotsford, BC V2T 2Z1  604.854.1101  info@plfv.org  plfv.org

bPOSITIVE LIVING NORTH

#1 - 1563 Second Avenue Prince George, BC V2L 3B8  250.562.1172 or 1.888.438.2437  positivelivingnorth.org

bPOSITIVE LIVING NORTH WEST

3862F Broadway Avenue Smithers, BC V0J 2N0  250.877.0042 or 1.866.877.0042  plnw.org P5SITIVE LIVING | 26 | JULY •• AUGUST 2019

bPURPOSE SOCIETY FOR YOUTH & FAMILIES 40 Begbie Street New Westminster, BC V3M 3L9  604.526.2522  info@purposesociety.org  purposesociety.org

bREL8 OKANAGAN

P.O. Box 20224, Kelowna BC V1Y 9H2  250-575-4001  rel8.okanagan@gmail.com  www.rel8okanagan.com

bRED ROAD HIV/AIDS NETWORK

61-1959 Marine Drive North Vancouver, BC V7P 3G1  778.340.3388  info@red-road.org  red-road.org

bVANCOUVER NATIVE HEALTH SOCIETY 449 East Hastings Street Vancouver, BC V6A 1P5  604.254.9949  vnhs@shawbiz.ca  vnhs.net

bVANCOUVER ISLAND PERSONS

LIVING WITH HIV/AIDS SOCIETY 1139 Yates Street Victoria, BC V8V 3N2  250.382.7927 or 1.877.382.7927  support@vpwas.com  vpwas.com

bWINGS HOUSING SOCIETY 12–1041 Comox Street Vancouver, BC V6E 1K1  604.899.5405  wingshousing@shaw.ca  wingshousing.org

bYOUTHCO

205–568 Seymour Street Vancouver, BC V6B 3J5  604.688 1441 or 1.855.968.8426  info@youthco.org  youthco.org

POSITIVE LIVING BC SOCIETY BUSINESS UPCOMING BOARD MEETINGS 2019

JOIN A SOCIETY COMMITTEE!

All meetings in the 2nd Floor Meeting Room

If you are a member of the Positive Living Society of BC, you can join a committee and help make important decisions for the Society and its programs and services. To become a voting member on a committee, you will need attend three consecutive committee meetings. Here is a list of some committees. For more committees visit positivelivingbc.org, and click on “Get Involved” and “Volunteer”.

THURSDAY — July 11, 2019 —2 pm

Complete Board Evaluation Chart (2) | Executive Committee Update | Events Attended

THURSDAY — August 8, 2019 —2 pm

Written Executive Director Report | Executive Committee Update | PHSA Quarterly Reports | Events Attended

Board & Volunteer Development_ Marc Seguin  604.893.2298

 marcs@positivelivingbc.org

Education & Communications_ Adam Reibin

THURSDAY — September 12, 2019 —2 pm

 604.893.2209

AGM Minutes | Executive Committee Update | Standing Committees | Events Attended

 adamr@positivelivingbc.org

History Alive!_ Adam Reibin

THURSDAY — October 10, 2019 —2 pm

 604.893.2298

 adamr@positivelivingbc.org

Written Executive Director Report | Executive Committee Update | Events Attended

Positive Action Committee_ Wayne Campbell

Positive Living BC is located at 1101 Seymour St, Vancouver, V6B 0R1.

For more information, contact: Mike Hedges, Director of Operations  604.893.2268 |  mikeh@positivelivingbc.org

Positive Living Magazine_Jason Motz

 604.893.2252

 604.893.2206

 waynec@positivelivingbc.org

 jasonm@positivelivingbc.org

ViVA (women living with HIV)_Charlene Anderson  604.893.2217

Name________________________________________ Address __________________ City_____________________ Prov/State _____ Postal/Zip Code________ Country______________ Phone ________________ E-mail_______________________ I have enclosed my cheque of $______ for Positive Living m $25 in Canada m $50 (CND $) International Please send ______ subscription(s)

 charlenea@positivelivingbc.org

m BC ASOs & Healthcare providers by donation: Minimum $6 per annual subscription. Please send ____ subscription(s) m Please send Positive Living BC Membership form (membership includes free subscription) m Enclosed is my donation of $______ for Positive Living * Annual subscription includes 6 issues.

Cheque payable to Positive Living BC.

P5SITIVE LIVING | 27 | JULY •• AUGUST 2019

Last Blast Be Positively Social at Positive Living BC

P

by Ken Coolen

ositive Living BC’s social networking programs are trans- like to help, or want more information, send me a message to forming. Social networking programs are now being led kenc@positivelivingbc.org. by me, Ken Coolen, the new Peer Engagement Coordinator.

Another new and exciting change is the new social activity club, I have worked with Positive Living for the past ‘Positively Social.’ Over the years there have been various clubs with several years in the Fund Development specific mandates such as Outdoorsmen, Suits, and Department and am excited to revitalize Average Joe’s. Now the essence of these clubs is the members’ lounge and our social being rolled into one. The big change is that activities for the membership.

Positively Social will be for all HIV-positive This means bringing back members and their friends. As society some favourite activities and has changed so have the relationships launching some new events. of PLHIV. Many have serodiscordant In March we kicked relationships both with intimate things off with the Spring partners and friends. We want our Launch. A week packed members to be able to include full of activities including others in activities. jewelry making, microwave The events will range from mug cakes, bingo and T-shirt outdoor activities to dinner outings creations, just to name a few. with in-house events held at the The response was tremendous Positive Living BC building at 1101 and, as we move forward, activiSeymour Street, fourth floor. Some ties will occur on a regular basis. events will be free, and some will have a PO S Our oldest and dearest regular cost which will vary depending on the event.

IT I V E LIVI N G B C event is Cribbage Club (with Elis Aubie) This program will also include the ‘event ticket’ every Wednesday from 10 a.m.–1 p.m. This program, so when we get free tickets to events they is open to new and seasoned players alike. And an will be dispersed through the Positively Social network. extra bonus is that Elis is usually packing candy. The first Wednesday And finally, we are planning another retreat to Loon Lake of every month will be bingo in the lounge. There is no cost to play for late August. Applications for interviews can be found on our and there are fabulous prizes to win. The game starts at 1:30 p.m., website or stop by the office on the fourth floor. but we recommend you come early as it fills up fast.

The best way to stay up to date on this group and all activities Our newly formed Bridge Club meets every Friday. Led by one of is to subscribe to our eNews, or follow us on Facebook, Twitter, or our great volunteers, Jake, this is another fun way to meet others. The Instagram. Have a fun summer! 5 regular Bridge Club members will help you learn how to play this fun game. Lessons are from 12 p.m.–1 p.m. and then games start at 1 p.m.

Ken Coolen is Positive Living BC’s As well, there will be craft days happening in the lounge Peer Engagement Coordinator. every month. Already we have made jewelry, designed T-shirts, learned how to make cake pops, and decorated Easter eggs. To see which craft activity is coming up, check the Event Calendar on www.positivelivingbc.org. If you have an idea for a craft, would P5SITIVE LIVING | 28 | JULY •• AUGUST 2019

When released, drop into our offices in either Vancouver or Surrey to be connected to a peer navigator, get linked into a variety of programs and services, as well as referrals to community case management services and health care.

POSITIVE LIVING BC

POSITIVE HEALTH 4th Fl. – 1101 Seymour Street, SERVICES CLINIC

JRC — ST. PAUL’S HOSPITAL

Vancouver BC V6B 0R1

5th Fl. – Burrard Building 1081 Burrard Street, Vancouver BC V6Z 1Y6

Jim Pattison Outpatient Care & Surgery Centre 3rd Fl. – 9750-140th Street, Surrey BC V3T 0G9

Contact the POPLine to request information about: • Anti-retroviral treatment information, side effects management, disease progression, disclosure strategies and criminalization • Peer counseling for people newly diagnosed with HIV • CHF updates POPLine: Federal 1.877.900.2437 Provincial 604.525.8646

OPENING CEREMONIES AT 11:30AM SIGN UP TODAY AT VANCOUVERAIDSWALK.CA

BROUGHT TO YOU BY

TITLE SPONSOR

PLATINUM SPONSOR

#AidsWalkYVR #VancouverAIDSWALK

GOLD SPONSOR

MEDIA SPONSORS