Health Related Social Movements - The Fight for Health Care Equity and Sustainability

Over the past century the scientific model of Canadian healthcare has created a power structure that silences patient-led discourse and effectively shuts out the public, leaving health and medicine the exclusive territory of experts. Rebel Herbal is passionate about accessibility and equity in healthcare and although the subject of patient silencing and discrimination can be polarizing, it's critical that we explore it in order to take steps toward a stronger, more sustainable system. This post explores some of the ways that social activism has provided patients and the public with a means to express concerns with the system and possibly impact health care policy. There is a growing body of social activism directed at both shifting our societal perceptions of disease and our approach to its prevention and treatment. In addition to examining some of the ways that health related social movements have provided a voice to patients and the public, we will also explore the power of pharmaceutical drug corporations and the media to impact public perceptions of disease and healthcare.

Factors that have given rise to health related social movements include:

The introduction of our current scientific model of healthcare and “the founding of medical schools in Canada, inspired by various motives, including the desire of doctors (who invariably founded the schools) to teach along lines of which they approved and to ensure a source of income for themselves. They were supported by those who felt that many Canadians who sought education in the United States were being inadequately trained and were being exposed to dangerous democratic principles… in Canada the schools sought affiliation with universities and maintained high standards of entry, in order to discourage charlatans (or quacks) and to improve the public reputation of doctors.” (Roland) Physicians successfully lobbied the government to establish laws that would give them primacy of medical care, after which there was a rapid transition from health care diversity to the criminalization of all non-allopathic practitioners. The most persecuted were female practitioners, including midwives, Aboriginal and other traditional healers, herbalists, and a variety of spiritual healing practitioners. Systemic racism and prejudism within the newly established health care system was the norm and remains the norm up to the present.

When allopathic medicine gained primacy in Canada, patients and the public lost their voices. The most concerning result is that their collective values are no longer adequately incorporated in policy, having been overridden by the demands of pharmaceutical corporation lobbyists, doctors, and scientists. Multiple social justice movements struggle to counter systemic silencing in modern health care. Kidd and Carel identify two forms of epistemic complaints in healthcare practice that should be considered when assessing why patients are excluded from some forms of health care discourse: Patient complaints and physician complaints. Patient complaints “…typically take the form of reports that healthcare professionals do not listen to their concerns, or that their reportage about their medical conditions is ignored or marginalized, or that they encounter substantive difficulties in their efforts to make themselves understood.” Conversely, physicians “…often complain that patients provide medically irrelevant information, make odd statements and superfluous remarks about their condition, or otherwise fail to contribute epistemically to the collection of medical data. Taken together, a difficult epistemic situation emerges in which neither group can engage in effective testimonial and hermeneutical relations with the other.” (Kidd, Carel) Social equality demands more balanced discourse so that practitioners can better understand the needs of their patients and how to best advocate for them at the policy level.

Our current medical system is built on European allopathic medical tradition. “In order to understand the lofty position of allopathic medicine…we need to consider the way epistemic privilege is granted or withheld in Canada and other Western societies. Western society has presumed, on the basis of its unique access to “reality,” to dictate to other societies with different epistemic traditions how they ought to conduct themselves.” (Hanrahan & Wills) This is particularly troubling to groups who have suffered under paternalistic attitudes and initiatives in the past, including Indigenous people. Pervasive racism toward Indigenous people is a reality in the Canadian health care system. Marginalized groups are the most likely to suffer neglect, misdiagnosis, and other forms on inadequate and unequal care within our current healthcare structure. Those with prior experiences of racism, prejudice, or deprivation of liberty and autonomy, especially when experienced in previous encounters with the health care system, are vulnerable to lifelong hesitation to engage with the health care system in any way, placing them at increased risk of preventable disease and disability and even premature death.

Not just a racialized issue, marginalized groups such as the addicted are also susceptible to mismanagement of care, frequently resulting in tragic patient outcomes. The role of protecting patients from drug misuse issues and addiction has been transferred from the healthcare system to police and criminal justice services. This has resulted in disconnect between healthcare providers who prescribe drugs and treat drug related health concerns and those who are vulnerable to drug misuse and addiction. In her book, Health Care In Canada: A Citizen’s Guide to Policy and Politics, Katherine Fierlbeck states: “In the past, physicians were seen as the front line defense against problematic drugs, but given the huge increase in the number of drugs and the number of people prescribed drugs…it has become unrealistic to expect doctors to maintain an encyclopedic knowledge of all current drugs, including potential side effects or the thoroughness of clinical trials.” This is another issue in itself: Some of the prescribed drugs themselves are addictive and eventually denying patients these medicines once their condition is considered “cured” may cause them to seek street drug alternatives to relieve symptoms including pain and depression. Since this transfer of responsibility from physician to justice services, addiction rates have not decreased and overdose rates have skyrocketed to the highest they have been in history. Naloxone kits may help reduce overdose death statistics, but they do not target addiction rates themselves. There are social factors that must be considered in health planning related to addiction.

While not traditionally the realm of medical doctors, basic human needs are not being consistently met on an ever growing scale, precluding many patients from effective care. Without access to regular meals, clean water, housing, and adequate clothing, it is impossible to maintain an appropriate level of health care for any individual. Scientific advancement cannot take the place of the necessities for life. When viewed through this much broader lens, a great deal of social activism can be considered “health related.” In fact, the majority of activism is aimed at improving social well-being, which directly impacts public health.

Types of health related social movements:

In addition to social movements that address specific ethical issues within the health care system, there are also a variety of movements that strive to destigmatize certain diseases and patient groups. Social and personal belief systems contribute a number of health related issues. The social constructivist approach to disease “argues that illness and disease, like deviance, are social constructions…A disease entity is the product of medical discourses. In turn, medical discourse can influence people’s behaviors, impact their subjective experiences of embodiment, shape their identities, and legitimate medical interventions…The approach foregrounds how illness is shaped by social interactions, shared cultural traditions, shifting frameworks of knowledge, and relations to power.” (Conrad & Barker) One of the effects of socially constructed stigmatization of health conditions, especially those that are perceived as self-inflicted, such as those caused by substance abuse, obesity, or other lifestyle factors is that they do not generate the same urgency to find mitigation measures and cures as health issues that afflict the “blameless.” The same is true of stigmatized conditions such as mental health issues or illnesses that cannot be proven with standard diagnostic tools, such as fibromyalgia and chronic pain syndrome. These areas of health care garner less public and political support as a result. Even within hospitals and clinics, medical triage is essentially an evaluation not only of which conditions are most critical, but also of which patients are victims of their condition and which suffer from self-inflicted harm, and finally, which lives are more valuable than others. Considering that these decisions are made by people with biased individual philosophies, the triage process leaves tremendous space for prejudices to create injustice. Not only are these human made, biased decisions, the people making them are not a diverse enough group to be fairly representative of all Canadians, compounding the biases.

Ethical issues and stigmatization of illness are not the only strain factors that are fueling the growth of health related social movements. Transparency in healthcare is another important category of health related social activism. The public wants to know if their doctors are accepting direct payments from drug companies; if they or their children are part of human trials for medications; if they were, indeed, injured by medical intervention or if their symptoms were caused by their illness. Additionally, the public wants to hold pharmaceutical companies liable for their role in the opioid crisis, for the suicides that were a side effect of mental health medications, and for the harm caused by drugs that were not adequately tested. As prescription rates spike, along with injury and illness caused by the prescribed drugs, activism that addresses these issues is growing as well. In Canada, prescription drug errors are the second most common cause of preventable death in hospitals. Statistics show continuous increases in numbers of people waiting longer to seek health care and refusing to accept standard healthcare practices, including antibiotic therapies and vaccinations, citing fear of medical errors and adverse drug reactions. Limited access to information, misinformation, misdiagnosis, and medical/surgical errors have damaged trust, and lack of transparency regarding these issues only compounds mistrust. According to Statistics Canada, “Most studies of medication error have been based on data gathered from clinical records, which are well known to yield incomplete information. Partly because of fear of reprisal, very few incidents—probably only the 5% or so that are considered potentially life-threatening—are noted in patients' charts. Therefore, from a review of clinical records, it is not possible to assess the true frequency of medication error, nor to identify the circumstances that contribute to such error.”

The number and size of health social movements is growing, at least in part due to intersectionality with other social movements, including various natural health movements, freedom of choice and right to bodily integrity, whole foods and holistic living, environmental health, social equality, and movements against corporate powers. In fact, health and medicine intersect with a wide variety of current social issues and social movements including: Indigenous people’s rights, LGBTQIA+ movements, gender equality and women’s rights movements, parental rights, the opioid crisis, and movements fighting marginalization of minority groups. Health related social movements can also use amplification to recruit constituents as health and medicine are important in everyone’s life. Social issues and strain factors in all of these areas of personal and group experience have helped create opportunity structures for a diversity of health social movements to take hold.

The power of big-pharma in influencing social perceptions:

When considering the efficacy of many health-related social movements in conveying their message or instigating change, it is essential to recognize the power of pharma-drug corporations in medicine and in influencing public perceptions regarding health and health care. They fund approximately 75% of mainstream media through their advertising dollars, pay for curriculum development and student scholarships within medical schools, fund their own private testing of their products, pay for peer-reviews in medical journals, and hold enormous power within international politics. Pharmaceutical companies are for-profit, and their primary incentive is financial. This has a direct effect on all other aspects of health care as they are so central to our model of care. There is almost no injury or disease that is not treated primarily with drug therapy. This approach is crippling the health of both Canadians and Americans, who consume over 75% of the drugs produced globally. Our health statistics are not improving with our booming dependence on drugs. With one third of Canadian adults considered dependent on medication for survival, we are in the midst of a health crisis, and many of us are not aware of it.

Targeted advertising campaigns certainly contribute to the overuse of pharmaceutical drugs in Canada. In fact, pharmaceutical corporations spend more on advertising their medications than they do on researching their safety and efficacy. Canadians are provided with medications for conditions that would be treated exclusively with non-drug therapies in most of the world. Statistics Canada reports that “41% of community-dwelling 6- to 79-year-olds had taken at least one prescription medication within two days of their household interview,” representing $29 billion in Canadian health care spending. Prescription rates for mental health and opiate pain relieving medications, in spite of their potential to cause devastating side effects, continue to increase even though evidence suggests that non-drug therapies may be more effective in the management of both conditions. The fact that we do not have long-term outcome data for most drugs as they have not been prescribed for a lengthy enough time period to generate such data is very concerning. Many patients who are harmed by newly released medications state that they had no idea that the drug was new, part of a clinical trial, or bore increased potential for harm due to its unexamined long-term harm potential. The promise of better physical or mental functioning is the focus of advertising campaigns and celebrity endorsements, and we are only just starting to question how accurate the promises are.

Mainstream media coverage of social movements in health and medicine often frame those who challenge the safety and efficacy of pharmaceutical drugs in a negative light. Constituents of the movements are often portrayed as ignorant, stubborn, fanatic and anti-science and may be afraid to state their position for fear of backlash. As governments increasingly demand scientific evidence to support policy, this pushback has become very effective in shaming the public in a sort of modern day charivari. Yet, it isn’t necessarily those who question drug therapies who are opposed to the use of empirical evidence as a base for policy development. Pharmaceutical corporations themselves often challenge the scientific evidence regarding the safety and efficacy of the medications they produce, “…at least in part because of the significant economic resources corporations can bring to bear to influence policy outcomes… When economic manipulation fails to influence research, vested interests turn to a complex arsenal of delaying tactics to forestall the release or influence of scientific evidence. These tactics include litigations, fighting for access to raw data, funding parallel studies, inundating researchers with administrative procedures, and catalyzing congressional reports or inquiries…Vested interests have also found ways to infiltrate professional organizations under the guise of academic neutrality. This can have serious ramifications for national policy, since the credentials and expertise of professional organizations give them high credibility…One recent survey showed that only 43% of medical journals had policies requiring disclosure of conflicts of interest.” (Rosenstock & Lee) Claims that the safety and efficacy of pharmaceutical drug therapies are scientifically proven are clearly not always accurate.

In spite of the power of big pharma, social acceptance of drug therapies is being called into question, largely due to social movements that seek to inform the public of the risks associated with them. For as long as pharmaceutical drugs have existed, there have been individuals and groups hesitant to use them. They have comprised the drastic minority in recent years but the questions posed by the hesitant are increasingly difficult to ignore, as evidence of pharmaceutical drug harm spikes. Movements spearheaded by parents who have lost their children to drug related overdoses, suicides, and adverse reactions are among the most compelling. Their tactical approach often includes social media dispersal of compelling personal stories and images of their children before and after their prescription drug experience. Images of injured children in critical care in hospitals or flower and stuffed animal covered graves are highly effective in appealing to the shared desire of all parents: To save their children from all preventable harm. The approach is so effective, that even one of the most discriminated against health social movements, the anti-vaccination movement, has seen tremendous recent growth. Videos and images of children who were allegedly injured by vaccination has led to rising parental fear and decreased vaccination rates across the developed world.

Social media and word-of-mouth personal contact have become the primary source of diffusion for many health-related social movement, as the public has the greatest access to these forms of communication and they are the least controlled by corporate interests. “With thousands of web sites and user groups dedicated to just about any disease imaginable, illness is becoming an increasingly public experience. This is leading to the creation of not only illness subcultures, but also to illness-based social movements, lay demands for medicalization or demedicalization, new avenues for sharing information and experiences, and the expanding influence of lay knowledge about illness.” (Conran & Barker) “The idea is that digital media can replace traditional organizations, allowing the emergence of activism based on personal – rather than collective – frames of action shared on technological platforms. In the realm of ‘connective action’, traditional organizations are either absent or only responsible for a loose coordination of action.” (Vicari & Cappai)

In addition to movements led by individuals and public interest groups, the government is taking steps to minimize the harm caused by certain drugs, to create a health care system that is more inclusive of marginalized individuals, and to provide funding for a greater diversity of health care options. For example, in August 2018 the British Columbia government filed a lawsuit against the manufacturers of opiate medications believed to play a significant role in the opioid crisis the province continues to grapple with. According to a CBC newscast, “The suit…was filed…against over 40 companies involved in the manufacture, distribution and wholesale of opioids. The government alleges the companies downplayed the risks of their drugs when advertising them to physicians, especially when it comes to their addictive potential, thus contributing to the opioid crisis.” (Britten) This example indicates government recognition of what social activist groups have been saying for years: That the long-term outcomes of the drug experiment we are participating in are uncertain, and that it is the role of policy to protect citizens from harm, regardless of lobbyist pressure.

Social activism could not be considered successful if it provided a voice to the public but that voice was not heard. In order to succeed, health care social movements have to create some sort of change in the functioning of the health care system, in health care policy, or in social perceptions. Some movements have been highly successful, such as the movement to legalize medicinal marijuana in Canada or the movement to criminalize female genital mutilation on an international scale. Other movements, while also successful, have succeeded in reaching some of their goals but not all of them. For example, because stigmatization of certain diseases is a social construction, social movements that try and create awareness and understanding of them, such as those that aim to destigmatize mental illness or HIV/AIDS, may have succeeded in generating awareness but not necessarily in shifting the underlying social perceptions. That is not to say that social perceptions will never shift, but that they often lag behind changes in public awareness or in policy.

Indigenous health social movements provide another example of partial success. Given the reality of systemic racism in our current healthcare system, it is no surprise that growing numbers of Indigenous people avoid seeking medical care, and that traditional healing methods are increasingly celebrated as a holistic means of mitigating physical illness and simultaneously restoring cultural integrity. Through social activism, indigenous people have succeeded in their fight for the reintroduction of healing lodges in some areas and have an ever growing number of practicing Traditional healers and medicine men and women. Integration of allopathic and traditional healing methods could help repair some of the damaged trust in the medical system, but that would require Indigenous traditional healers have a place in the communication circle of the health care team and that respect for their healing traditions be observed. Respect for patient autonomy in choosing their health care team, and subsequent inclusion of the patient-selected team members could bridge cultural gaps and help mend the patient-practitioner relationships that our current health care model has destroyed. Policy has shifted to accommodate some of the change that activism demands, but attitudes within the healthcare system have yet to catch up.

Policy changes indicate a growing recognition of integrative medicine as a means of reducing barriers to healthcare access and fostering inclusivity across healthcare sectors. The Canadian Association of Midwives (CAM) is another example of integrative medicine and its efficiency in reducing barriers to healthcare access. Although midwives have existed since women have given birth, they were deeply maligned following the late 1800’s/early 1900’s and women were strongly pressured to birth in hospitals, attended by almost exclusively male doctors. Midwives lobbied against this marginalization, fighting tirelessly for women’s rights, until midwifery was finally legalized in Canada in the 1990’s. Their social justice fight was highly successful and today there are about 450 midwives practicing in British Columbia, with ever growing demand for increase to that number. “CAM is an organization that is rooted in the feminist movement and has a history of commitment to human rights and social justice. It is [their] goal to pursue visionary leadership in [their] work on these issues within the Canadian and global healthcare context. [They] are committed to including transgender, queer, intersex and marginalized communities in [their] central dialogue and ensuring that CAM is inclusive in its statements, actions and in all aspects of its work. These priorities are not established by the needs of the majority but by the importance of the inclusion of all people.” They have been tremendously successful in improving health care statistics for women and infants across the country.

Most of the pushback against policy changes in healthcare comes directly from the stakeholders who would be negatively economically impacted by such change: Physicians and other biomedical employees and pharmaceutical drug corporations. Still, the largest stakeholders group is the general public, the ill and those who support them. Social activism provides a voice to the public and, importantly, to marginalized groups. It had been successful in reducing barriers to access, stigmatization of certain diseases and patients, and physical harm caused by our health care approach. Studying health social movements offers insight into an innovative and powerful form of political action aimed at transforming the health care system, modifying people’s experience of illness and addressing the broader social determinants of health and disease of diverse communities. Health social movements challenge state, institutional and cultural authorities in order to enhance public participation in social policy and regulation, and to democratize the production and dissemination of scientific knowledge in medical science and public health research.