The HIV/AIDS story illustrates how attitudes in society can change, and that progress is possible with collective action.
President John F. Kennedy’s challenge to the United States to land a man on the moon by the end of the 1960s propelled an unprecedented wave of innovation and expertise in science that is still felt today. Thousands of Americans worked collectively to help Neil Armstrong take his first steps on the moon in July 1969, and their efforts generated advances in aeronautics, computers, advanced materials and manufacturing.
Like the space race, the 35-year fight against the HIV/AIDS epidemic has had a broad and profound influence. Its impact has been felt not only on health care policies and practices, treatment and scientific knowledge of our immune system, but also on human rights, drug research and regulation, social collaboration and science-based decision-making. It has also strengthened the role of patients in health care and leveraged the expertise and energy of thousands of volunteers and advocates who have helped advance our society and shape our government institutions.
Evolution of an epidemic
Acquired immunodeficiency syndrome (AIDS) is a life-threatening condition caused by the human immunodeficiency virus (HIV). Without medication, it takes generally 10 years before HIV weakens the immune system to the point where a person is likely to contract an AIDS-defining illness such as pneumonia, tuberculosis or cancer.
HIV/AIDS was first recognized in 1981 in Los Angeles. Since then, the virus has learned how to mutate, change and adapt, keeping public health experts on their toes at the local, national and global levels. Initially it was thought to be a disease confined to gay men, and prevention campaigns slowed the number of infections in that community for a time, but the disease was soon found in non-gay people who had received blood transfusions and later in intravenous drug users. Within five years, the World Health Organization had reported 38,401 cases of AIDS from 85 countries.
HIV/AIDS ranks among the worst episodes of disease in Canadian history. In Canada, the latest figures (from 2014) show that more than 26,000 people with HIV have died since the beginning of the epidemic. (By way of comparison, 47,000 Canadian lives were lost in the Second World War, and an estimated 50,000 Canadians died from the 1918-19 influenza pandemic.) The number of new HIV cases in Canada has gradually declined since 1996, now averaging about 2,500 new infections per year; the total number of Canadians living with HIV was approximately 75,500 by the end of 2014. It is estimated that 16,020 more people with HIV remain undiagnosed.
Among Canadians living with HIV:
- 53 percent are gay men and other men who have sex with men
- 22 percent are female
- 19 percent used injection drugs
- 31 percent contracted HIV through heterosexual sex
- 15 percent are from a country where HIV is endemic (primarily countries in sub-Saharan Africa and the Caribbean)
- 9 percent are Indigenous Canadians
Less than 1 percent of people living with HIV in Canada have an HIV status that cannot be attributed to sexual transmission or injection drug use. This includes people who likely contracted HIV through blood transfusions or clotting factors, transmission from mother to child or needle-stick injuries in the workplace. (The excellent safety record of Canadian Blood Services must be acknowledged; since it began managing Canada’s blood system in 1998, there has not been a single recorded instance of blood-borne infection from either hepatitis C or HIV/AIDS.)
HIV/AIDS and social justice
HIV/AIDS is a complex and confounding epidemic “fueled by injustices.” It attacks the most vulnerable and those with the least access to social determinants of health such as education, stable income and social supports. It is merciless and relentless. As the epidemic exploded in the 1980s, those who controlled the levers of power were forced to face some uncomfortable truths. They had to go where they didn’t want to go or the disease would keep right on marching. They had to design collective responses that included people living with HIV/AIDS and bring in effective prevention programs that recognized gay sex and the gay culture. They also had to acknowledge discrimination and stigma as barriers to programming and implement harm-reduction efforts such as needle exchanges for drug users.
The era of the early 1980s needs to be remembered. It was the time of Ryan White, a teenager infected through a blood transfusion who was barred from his school. Rock Hudson, a prominent actor, was the first celebrity to tell the public that he was gay and had the disease. Doctors refused to treat patients. Religious leaders declared that those infected were leading unhealthy lifestyles and said they deserved their disease. Families disowned their children, and children were discriminated against by their classmates for their own HIV status or even for their parents’ HIV status. Husbands beat up their wives and threw them out when it was the husbands who were the infectors.
André Picard of the Globe and Mail wrote in 2014 that the advent of AIDS advanced gay rights. He characterized public attitudes as evolving from “stigmatization and oppression” in the ’80s to, three decades later, “once-unthinkable acceptance of same-sex relationships in the Western world: Gay marriage is widely accepted, human rights protections have been extended to gays and lesbians, and events like World Pride are not only mainstream family activities, but tourist draws.”
Initially, HIV activists asserted the right to express their sexual orientation openly without discrimination. As time went on, they championed the human rights of vulnerable populations: Indigenous people, prisoners, sex workers, transgender people, homeless people, intravenous drug users, women, refugees and immigrants. Over the past 20 years, as the response to HIV matured in the developed world, activists have increasingly focused on the developing world.
Community and political responses
During the early 1980s, HIV/AIDS organizations were formed at the local level primarily to provide care and support to dying people; they were run mainly by the gay and lesbian communities. The epidemic engaged patients and their family and friends from every segment of society, providing a supply of volunteers and advocates with broad skill sets who were determined to provide care and improve conditions for those affected and who invented a community response on the fly. Soon, models created in San Francisco and New York were replicated in communities across North America.
The lack of treatments and the realization that effective prevention programs were not being widely implemented spurred some to bring their concerns to a broader public. The Denver Principles, signed in 1983 by a small group of people living with HIV/AIDS, are widely recognized today as the start of the activist movement and a step toward patient empowerment in health care. They condemned attempts to label people who were living with HIV/AIDS as victims, recognized the central role of these individuals in prevention and embraced viewing prevention and treatment through a human right lens.
In 1987, ACT UP! was launched in the United States. It brought a more militant approach and a focus on prevention, promoting human rights, ending stigma and discrimination, and lifting the ban that kept travelers with HIV out of the United States. Its motto was “Silence=Death,” with an inverted pink triangle based on the symbol used by the Nazis to denote gay people. ACT UP! supporters were generally white and middle class and demanded from governments and other people in decision-making positions the rights they were entitled to. They broke the established rules and were totally fearless. They really had nothing to lose.
In Canada, the new activism spurred the formation of a number of organizations: AIDS Action Now!, Canadian AIDS Treatment Information Exchange (CATIE), British Columbia People With AIDS (BCPWA, now Positive Living BC) and the Canadian AIDS Society. A scandal also galvanized the community when it was revealed that the Canadian Red Cross had continued to collect and distribute “tainted blood” for transfusion for at least two years after it had been warned that this blood could be contaminated with HIV or hepatitis C.
Responding to the public protests of Canadian HIV/AIDS activists, the Mulroney government created the first HIV/AIDS strategy in 1990, carving out a federal role and leading a multifaceted program based on epidemiological and research data: prevention to halt the spread; care, treatment and support programs for those with the disease; surveillance and monitoring to identify communities most at risk and measure progress; community capacity building to strengthen programming; funding to support treatment research; funding for community health policy and systemic treatment access activities; support for nongovernmental organizations and funding for international assistance; and dialogue on best practices.
Health Minister Allan Rock (for whom I served as adviser for five years starting in June 1997) updated the strategy in 1998 after in-depth consultations with the community of people living with HIV. We adjusted it to address the latest epidemiological trends, which showed increasing prevalence among intravenous drug users and Indigenous populations. Rock also announced the first Ministerial HIV/AIDS Council, chaired by two people living with HIV: Greg Robinson, president of AIDS Action Now!, and Louise Binder, a lawyer and chair of the Canadian Treatment Action Council. Representation from the two foremost patient rights’ organizations helped ensure accountability to the community.
A pivotal moment
In 1996, antiretroviral treatments were announced at the Vancouver World AIDS Conference. It was also announced that a combination of at least three different classes of antiretroviral therapies taken together worked best. Julio Montaner of the BC Centre of Excellence in HIV/AIDS calls this the pivotal moment when HIV became a chronic manageable disease.
People began to live, which created a new challenge: getting access to the new medicines, and quickly. The HIV/AIDS community successfully advocated for major changes to the way drugs were regulated in Canada to recognize the need for a fast-track review system for approval or sale. They demanded a post-approval surveillance system to follow people taking the drugs, to gauge long-term side effects and how long drugs remained effective; today this advocacy has developed into the “real-world evidence” movement in health. They demanded a focus on the patient, with the motto “Nothing about us without us”; and they rightly wanted the widest available choice of medicines, regardless of geography or ability to pay, so that doctors could find the right treatment formula for each patient.
They learned the science of the disease and treatments themselves and networked extensively to share information. They also wanted new medicines that combined treatments or were less toxic to be counted as innovative and not rejected for drug plans by regulators. They wanted early access to clinical trials and the widest variety of treatment options to help those who had exhausted conventional treatment options and compassionate access programs for those who did not fit trial eligibility criteria. We now have quite equitable and full access to the most necessary therapies on public health plans. The results of this work can be seen in the 37 HIV/AIDS drug treatments listed by CATIE developed by the pharmaceutical industry that are available in Canada.
One of the greatest legacies of this collective response was the enduring and equal partnerships and collaborations with researchers, clinicians, government representatives and employees, allied health care groups and the pharmaceutical industry, across geography and demographics. They pooled their individual education, expertise, skills and life experience to form a synergistic team, always putting forward community-informed positions on issues. People affected by other diseases — such as cancer, at a time when oncology is on the cusp of some amazing breakthroughs in research and treatments — are looking to the HIV experience as they create the blueprint for their communities.
AIDS around the world
The 2000 World AIDS Conference in Durban, South Africa, refocused attention on the developing world. The last few years have brought key initiatives such as the UN Sustainable Development Goals, which include a target to end the epidemic by 2030; investment by the Gates Foundation to develop vaccines against HIV; and President George W. Bush’s strategy improving access to medicines.
Today, our global efforts are coalesced around the 90/90/90 Strategy, which sets three measures of progress in eradicating the disease. Federal Minister of Health Jane Philpott reported on World AIDS Day 2016 that Canada is making important advances on these measures: 80 percent of HIV-infected people in Canada know their status; 76 percent of those who know they have HIV are on treatment; and 89 percent of people on treatment have suppressed viral loads (virtually eliminating the risk of transmission).
Unfortunately, the 90/90/90 numbers in many other countries are much worse and the HIV/AIDS story still has many chapters left to be written. Medications dramatically slow the progression of the disease, but there’s no cure for HIV/AIDS, and success in development of a vaccine has been elusive. People are taking lifelong toxic therapies with some serious side effects, and those therapies are not inexpensive.
Treatments have reduced AIDS deaths in many developed nations, but HIV continues to decimate populations in Africa, Haiti and parts of Asia. It also remains stubbornly persistent in Canada’s vulnerable populations like homeless people, intravenous drug users and Indigenous communities. Unfortunately, many of the dynamics that existed in North America in the early 1980s persist in the developing world. Many countries have yet to confront stigma and understand their specific epidemics.
Within Canada, the notion of consultative policy development and decision-making that brings citizens and civil society into the tent has become the norm rather than the exception. While this approach was eroded somewhat in the Harper years, it is back in full force as Prime Minister Justin Trudeau’s Open Government program harnesses communication technology and social media to include thousands of Canadians in more than 450 consultations on topics ranging from climate change, culture and the digital economy to housing, marijuana and our innovation challenge.
The current political context that brought a Donald J. Trump presidency and the United Kingdom’s Brexit vote is a source of despair for many. Some initially concluded that progressive ideals are out of vogue or that somehow rights-based advocacy has overreached and sparked a backlash. The history of HIV/AIDS and the widespread protests we have seen early in Trump’s term remind us that progress must fight to find its place and that ignorance, discrimination and stigmatization are powerful adversaries. But the HIV/AIDS story also illustrates how attitudes can change greatly within a generation and that, when enough committed people work collectively on a common goal, progress is sure to follow.
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