Empowerment P
In the Beginning . . .
In 1981, doctors reported that several young gay men from Los
Angeles and New York had inexplicably died from rare cancers,
infections, and an uncommon type of pneumonia. As cases swelled,
gay communities were stigmatized as carriers of a fatal disease
labeled the gay plague. Gradually, as infections emerged among
injection drug users, hemophiliacs, and heterosexuals, the world
realized that the epidemic did not discriminate. By 1982, doctors
named the disease Acquired Immune Deficiency Syndrome (AIDS)
but were virtually powerless to treat it or prevent its spread.
AIDS hit Vancouver in 1983. While most of the city was
paralyzed by ignorance and fear, a group of proactive people
living with AIDS (PWAs) mobilized to share information and
experiences. Informal support groups were organized in people’s
homes. Political lobbying and protests called attention to the
urgent need for treatment information and access to experimental
drugs. The first community-based AIDS organization in western
Canada, AIDS Vancouver, emerged from these early years of
coordinated support and activism.
Over the next several years, AIDS Vancouver developed into
a nationally recognized organization. In 1986, as a condition of
receiving federal government funding, AIDS Vancouver was
prohibited from providing treatment information and lobbying for
experimental drugs. Opposing these restrictions, a handful of
visionaries established the Vancouver Persons with AIDS Coalition—
a grassroots group which encouraged PWAs to empower themselves by advocating for their rights and their health.
The Vancouver Persons With AIDS Coalition conducted its
first business meeting in May 1986. Administrative and operational functions were shared by the Coalition’s 15 founding
members. Particularly influential among this group were Kevin
Brown, Taavi Nurmela, and Warren Jensen who put a human
face to AIDS and exemplified the Coalition’s self-empowerment
philosophy. Kevin Brown’s leadership qualities made him an
obvious choice as founding Chair, a position he held for two
terms, until shortly before his death in 1989.
In 1990, the Vancouver Persons with AIDS Coalition created
a mission statement. Three years later, at its 1993 Annual General
Meeting, the membership approved an organizational name
change, representing expanded service through a provincial
mandate. After 20 years, the Society’s mission remains its
fundamental guiding principle:
The British Columbia Persons With AIDS Society (BCPWA)
exists to enable persons living with AIDS and HIV disease
to empower themselves through mutual support and
collective action. From our personal struggles and
challenges come our courage and strength.
Self-Expression
In October 1986, the Coalition began publishing a newsletter to keep
members connected and informed about support groups, events,
advocacy issues, and treatment information. In 1993, the first
membership survey was included with an issue of BCPWA News;
results from this survey, and others that followed, enabled the Society
to assess members’ views on controversial subjects from pharmaceutical
funding to priorities for lobbying. To this day, membership surveys
remain integral to BCPWA’s policymaking and strategic planning.
By 1997, the volume of treatment information was so extensive
that the Society’s Treatment Information Program (TIP) launched
a separate publication entitled TIP News.
BCPWA News and TIP News were eventually consolidated to
create a single bi-monthly HIV/AIDS treatment information and
news magazine. The first issue of living5 magazine was published
in July 1999. Within one year, readership climbed to over 10,500
and 84% of readers surveyed indentified an increase in treatment
knowledge as a result of reading the magazine.
To keep pace with technology, BCPWA launched its first
website in 1997. The site provided information about the Society,
current events, and over 100 AIDS-related links. By 1999,
<www.bcpwa.org> was voted western Canada’s most popular AIDS
site. Some interactive features were added in 2001, and the website was re-designed in 2005 to include more detailed information
as well as on-line versions of BCPWA’s print and video resources.
The Society’s logo debuted in April,
1990 on the cover of issue #35 of BCPWA
News. The image of a pair of outstretched
wings against a gradient blue sky, with a single
feather below, was developed by former
Society Chair Pei Lim. The wings represented freedom through
empowerment, support through caring, and strength through abilities. Fully extended, the wings conveyed motion—bearing news,
awareness, and hope. The sky signified a new dawn and the
feather was a tribute to lost lives.
In 2003, a new logo was launched to reflect evolution at
BCPWA. The image of a purple ribbon arched over the Society
name combines blue from the Society’s first logo with red from
the AIDS ribbon, representing a bridge between past and present.
Untied, the ribbon encompasses the diverse AIDS community.
In July 2006, BCPWA launched a year-long provincewide campaign to end HIV stigma. The campaign was made
possible by the BC Association of Broadcasters who selected
the Society as its 2006/2007 Humanity Award recipient. The
prestigious award entitled BCPWA to extensive broadcast media
exposure valued commercially at $3 million. The campaign
included three components: a series of two provocative
television and radio ads, a website <www.endHIVstigma.ca>,
and a toll-free information line.
Self-Advocacy
Recognizing that people newly diagnosed with HIV face a multitude of decisions—from disclosure of status and relationships, to
health issues and treatment options—the Society published a
Positive Living Manual. First printed in 1993, then revised and rereleased in 1999 and 2004, the manual provides current medical
and nutritional information and explores a range of social and personal issues commonly encountered by people living with HIV.
PWAs also frequently face practical challenges in navigating
provincial government bureaucracy to obtain disability benefits. The
Society published Positive Change in 1999, a legal information
manual geared towards community advocates who assist individuals
in applying for disability benefits. In March 2005, BCPWA released a
revised, on-line version of this manual, Advocacy ActionKits, a stepby-step plain English self-advocacy tool for members.
Self-Sufficiency
The Vancouver PWA Coalition organized
the first AIDS Walk-a-thon in Canada
in 1986, with a handful of members
and supporters who marched around
the Stanley Park seawall, raising
awareness and over $7,000 for PWAs.
Over the years, BCPWA’s signature
fundraising event has generated more
than 5 million dollars to subsidize
direct services for HIV-positive British
Columbians. The event’s popularity inspired cities throughout
Canada to coordinate AIDS WALKs of their own, eventually
creating a national phenomenon. On its 20th anniversary, the
WALK joined a formalized national movement to raise awareness and funds for AIDS-serving organizations, by re-branding
and re-positioning itself as the AIDS WALK for LIFE. In 2002, the
Society launched a second signature fundraising event:
AccolAIDS, an awards gala recognizing exceptional achievements
in the BC AIDS movement. This annual AIDS community
gathering honours contributions in areas including: social
action, research, health promotion and harm reduction,
innovative programs, service delivery, philanthropy, and more.
Mutual Support P
The Power of Peers
Over the years, BCPWA’s support programs have reflected the diverse
and evolving needs of its members. In 1986, the Holistic Health Fund
was established to reimburse members up to $200 per month in
expenses for complementary or alternative therapies, courses, or
training. This provision, which subsequently evolved into the
Complementary Health Fund (CHF), was unprecedented in Canada
and was made possible principally through AIDS WALK revenue.
Although the monthly reimbursement amount has varied depending
on the volume of requests and available funds, the CHF has assisted
thousands of HIV-positive British Columbians over the years.
Thirty new programs were created in 1991 to respond to the
changing demographics among BCPWA’s membership. Support
groups were created
for injection drug
users, people with
alcohol addiction,
prisoners, and
heterosexuals. Also,
nearly-new donated
clothing was made
available to members through an innovative member-operated
enterprise, Polli & Esther’s Closet.
The Prison Outreach Program (POP) began in 1992 after an
HIV-positive prisoner contacted BCPWA with complaints about
inadequate institutional health services. In response, BCPWA
mobilized a group of volunteers to travel to provincial and federal
institutions to provide information and support to inmates. A tollfree POP telephone line was later set up as an additional
confidential resource. As the needs of prisoners changed, POP
operations moved from Support Services to Treatment Information
and Advocacy. Over the years, POP has provided harm reduction,
self-care, training, and advocacy services, as well as access to
the CHF for prisoners from some area institutions.
As a creative outlet, Theatre Positive was established in
1995. This collaborative troupe has written and performed
original productions, inspired by personal experiences living with
HIV, to give expression to feelings and to raise awareness about
AIDS-related issues. Theatre Positive has performed at the
Vancouver Fringe Festival, the BC AIDS Conference, community
centres, and the Pride Parade.
BCPWA’s Retreat Program brings together members from
diverse backgrounds and experiences, in a natural environment
that promotes relaxation, recreation, healthy living, and personal
growth. One of the annual retreats now focuses on spirituality.
In 2005, the SeroSupportive Retreat was added to strengthen,
affirm, and enhance relationships among sero-discordant (HIVpositive/HIV-negative) couples.
portable subsidies; the organization has maintained close ties to
BCPWA since its inception. In 1992, BCPWA, AIDS Vancouver,
and the Positive Women’s Network established the Pacific AIDS
Resource Centre (PARC), sharing resources and centralizing services
for PWAs in one location. The PARC library was a product of this
partnership, housing over 2,500 books, hundreds of journals,
newsletters, videos, and audiotapes. Due to space constraints and
divergent ventures, PARC gradually disbanded between 2000 and
2002. However, BCPWA, AIDS Vancouver, and the PARC library
remain in PARC’s original location on Seymour Street.
Various AIDS organizations teamed up in 1997 to provide a
Christmas dinner and celebration for PWAs known as Yuletown.
As well, BCPWA hosted its annual Christmas Party, serving over
300 dinners to members and their families; this holiday event
continues to be an important annual gathering.
Collective ActionP
Partnerships
Throughout the years, BCPWA has collaborated with other
organizations and groups on a variety of initiatives and projects.
The Vancouver PWA Coalition initiated a housing project in
1990, identifying needs and lobbying to provide adequate
housing for its members. Later that year, the British Columbia
Housing Commission allocated 25 subsidized housing units
for people living with HIV/AIDS; in 1991, the number of PWA
subsidized units increased to 44. By 1994, the business of and
demand for BCPWA’s Housing Program had exceeded the
resources of the Society’s Board of Directors. The Board determined
that the best interests of the Society and member housing needs
would be served by establishing an independent organization
to manage this program. Wings Housing Society, established in
1994, currently administers 111 subsidized units, including
Beginning in 1998, AIDS organizations in Vancouver and
the Lower Mainland were invited to participate in BCPWA’s
AIDS WALK as Community Partners, fundraising for their
respective organizations under the AIDS WALK (WALK for
LIFE) umbrella.
In September 1999, the Treatment Information Program,
in partnership with the BC Centre for Excellence in
HIV/AIDS, took their Treatment ABCs workshop on the road,
traveling to over 25 rural and remote BC communities.
Workshop content was customized according to the needs
and interests of each community audience, including people
living with HIV, healthcare professionals, community groups,
and caregivers.
A Hard Pill to Swallow
The first AIDS medications developed in the mid-1980s were
withheld from Canadians by government red tape. In 1986,
BCPWA Society founding members Kevin Brown and Warren
Jenson met with Health Minister Jake Epp to advocate for the
availability of the experimental drug AZT on compassionate
grounds. They presented a petition containing over 3,000
signatures and argued that citizens were dying while waiting for
treatment. In 1987, Kevin Brown became the first legal
Canadian recipient of AZT. Although the release of AZT was a
major triumph, treatments remained largely unavailable to
PWAs. Answering the demands of activists, the government
made a few new AIDS drugs accessible through the Emergency
Health Release Program. However, PWAs were required to
assume 20% of drug costs, often totaling thousands of dollars
per year. In response, Kevin Brown and BCPWA filed an
unprecedented court challenge in December 1987, claiming
the billing policy discriminated against people with AIDS.
Although they ultimately lost the court challenge, they won a
symbolic victory when the Supreme Court denounced BC’s
AIDS policies.
The government’s lethargic movement in research and treatment development pushed BCPWA to launch its own pilot study
on AIDS therapy AL721in late 1987. Although the outcome of the
trial was not medically significant, it maintains some distinction
as the first patient-run research project in Canada.
In December 2003, BCPWA initiated a Canadian boycott of
pharmaceutical giant Abbott Laboratories upon learning of a
400% price increase on their antiretroviral drug, ritonavir (Norvir)
in the US. A year later, the boycott came to a successful end
when Abbott USA announced that Norvir would be provided for
free to any US resident requiring the drug who was not covered
by a government program or private insurance.
In 2005, new protease inhibitors TMC 114 (darunavir) and
TMC 125 (etravirine) showed promise for individuals with resistant strains of HIV. The release of these drugs became political in
December of that year when five PWAs, failing salvage therapy,
were denied the medications under Health Canada’s Special
Access Program. Knowing that these individuals would likely die
without treatment, BCPWA staged concurrent protests outside of
Health Minister Ujjal Dosanjh’s campaign and constituency offices,
advocating the release of TMC 114 and 125 on compassionate
grounds. Participants dressed as Santa’s elves delivered five
coffins to the Health Minister’s office, representing the lives that
would imminently end without treatment. The protest resulted in
independent drug trials initiated by Dr. Julio Montaner of the BC
Centre for Excellence in HIV/AIDS.
Rights and Freedoms
Government policy and prejudice have perpetuated HIV-related
discrimination over the past two decades. Over the years,
BCPWA has coordinated numerous protests to oppose exclusion,
discrimination, and other injustices. In 1987, controversial amendments to the Health Act sought to quarantine people infected
with HIV. BCPWA retaliated against this violation of civil liberties
with a march through the city and a 200-person rally on the
steps of the Vancouver Art Gallery. The bill never passed.
In the mid-1990s many PWAs endured significant cuts to
their government benefits due to legislative changes that
effectively re-defined sources of revenue. To compensate for
this loss of income, BCPWA advocates began applying for
additional monthly allowances for members under Schedule C
2(1)(L) of the Disability Regulations. This provision allowed for
an additional monthly health allowance, for people with life-
have been categorically denied liver transplants in British
Columbia, despite evidence that HIV-positive candidates have
equivalent survival rates to uninfected transplant recipients.
Since the fall of 2003, the BC Transplant Society has assessed
HIV-positive patients for transplant eligibility but has yet to
approve a candidate for the procedure. BCPWA continues to
lobby for revisions to the Transplant Society’s eligibility guidelines for HIV-positive people.
threatening health conditions and no other financial resources,
to purchase health-care goods or services. With all applications
denied in 1996, the advocates revised their legal arguments
and subsequently attended and won nearly 600 tribunals the
following year. More than $9 million in Schedule C benefits has
In 1990, the Society boycotted the IV International AIDS
Conference in San Francisco in opposition to discriminatory
US legislation requiring disclosure of HIV status by all visitors. The same year, BCPWA called for a boycott of White
Spot Ltd. restaurants when the company wrongfully terminated
a member after his HIV status was discovered; the member
sued for damages and won.
In addition, to protest severe NDP cutbacks to AIDS
prevention programs, BCPWA boycotted the 1996 International
AIDS Conference in Vancouver. The Society held the position
that it was hypocritical to showcase the city as an international
AIDS leader while the provincial government imposed ruthless
funding cuts to HIV/AIDS programs and services.
BCPWA capitalized on the International AIDS Conference
to advocate for the renewal of the National AIDS Strategy (NAS),
due to expire in 1998. To get NAS back on the political agenda
and a protest march from the Vancouver Public Library to
General Motors Place, site of the 1996 conference. The
demonstration received global media attention and was
influential in the December 1997 renewal of NAS. The re-named
Canadian HIV/AIDS Strategy committed $42.2 million per year
with no expiry period on funding.
been awarded to BCPWA members since 1997.
In spite of successes, the tribunal and appeal process
was time-consuming. The waiting list to meet with a BCPWA
advocate exceeded two years and, even after submitting
applications, lengthy delays followed. By 1998, over 60 people
had died waiting for approval of Schedule C benefits. In 2000,
the Buddy Program was implemented to address the volume of
work; a team of 18 volunteers received extensive training to
assist members in the complex processes involved in accessing
Schedule C (1)(L) healthcare benefits.
However, still overwhelmed with applications and
tribunals, BCPWA pressured for legislative reform. Finally, in
the fall of 2001, the Monthly Nutritional Supplement Benefit
(MNSB) was introduced, entitling eligible PWAs to an additional
$225 per month in provincial benefits to purchase nutritional
supplements, vitamins, and purified water. Schedule C was
repealed, except for current recipients, and was replaced
with the new MNSB regulations and legislation. Relative to
the previous Schedule C (1)(L) application and tribunal process,
obtaining the MNSB was simple and efficient, resulting in
almost $650,000 paid out to members to date.
Equality with respect to medical treatment and health care
has been an ongoing challenge for persons with AIDS. PWAs
A Positive Future
Since 1986, the British Columbia
Persons With AIDS Society has
been dedicated to empowering
people living with HIV disease
and AIDS through its vision of
empowerment, mutual support,
and collective action. Unique
among other AIDS organizations
in Canada, BCPWA’s consumerdriven foundation and operating
structure ensures that the goals
and direction of the Society
reflect those of its more than 4,400 members. The Society’s work
is carried out collaboratively by volunteers and staff, both
members and allies, who share a commitment to BCPWA’s mission.
Reflecting on our 20 year history, amid the many struggles,
challenges, and losses, BCPWA can take great pride in our
collective achievements. Still, with no cure for HIV on pharmacy
shelves and new infections still prevalent, the need for consumerdriven programs and services for people living with HIV/AIDS
remains immense. The BCPWA Society will endeavour to
provide support, foster personal empowerment, advocate for
rights and freedoms, and engender hope in persons living with
HIV and AIDS until a need no longer exists.