The global public health response to the AIDS epidemic and the long battle to control tobacco use in the United States offer a study in contrasts in the application of human rights, civil liberties and ethics perspectives. Absorbing the lessons from these interventions and approaches across the spectrum can help us continuously re-evaluate and tailor public health responses to current and future problems by contextualizing social, political, cultural and economic influences.
The history of AIDS began in a cloud of panic, death, denial and marginalization. It transformed from an epidemic of infection to a human rights struggle. This was made possible by a monumental effort by a global coalition of health professionals, activists, scientists to refrain from the use of coercion and focus on individual rights, mass education and voluntary measures to control the disease. On the other hand, the early 20th century saw the lethal combination of the cigarette rolling machine and heavy advertising turn smoking into a major industry in the United States. With medical findings about the dangers of smoking being published, the situation has devolved into a long battle between the paternalistic hand of the government and the endless resources of the tobacco companies.
This essay explores the contrasts in public health policies adopted to control the two epidemics and how the learnings might influence the future discourse.
The differences in responses to AIDS and smoking stem from the differences in the segments of people affected. AIDS is primarily is associated with marginalized populations like homosexual men, intravenous drug users, minorities, sex workers who were skeptical about the government’s motives. AIDS is a social phenomenon and is found in communities that are poor and oppressed (Bayer). Smokers historically were the average adult covering all sexes and socio-economic status but over time, the social gradient has become pronounced. Further, teenagers have been targeted by tobacco companies and acquire a lifetime smoking habit.
Harm, Liberty and the Long arm of Paternalism
John Stuart Mill argued that ‘the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.’ The argument since then has been whether harm is the sole justification for legal or social coercion or whether to “save people from themselves by making certain courses of action illegal” (Conly 2012) or whether to nudge people into making better choices (Sunstein 2014).
What constitutes harm to others that justifies the use of coercion? Is it infecting a person with a deadly virus such as HIV through unprotected sex? Is it donating blood (in the era prior to testing) knowing that one is a member of a “high risk group”? Is it exposing children and non-smokers to passive smoke? Is it damage to the environment and wildlife? Is it the financial burden on the government (which can arise as a consequence of harm to oneself)? What is a proportionate response to the harm caused and what is the social cost? The relationship between an individual’s liberties and society’s welfare is complex and in public health we constantly have to wrestle with what is supreme and our response certainly varies based on context.
The AIDS response has been a stellar example in putting individual rights first. The emphasis has been on human rights, ending discrimination, protecting the vulnerable from stigma and protecting their right to privacy. Interventions have revolved around mass education, counselling and voluntary testing. (Bayer) and (Colgrove, 2005)
One of the criticisms against the approach to AIDS is around privacy and surveillance and the over reliance on individual responsibility. By and large, some form of a surveillance system has now been put in place to inform prevention efforts and policy making. The WHO goes as far as to say that “countries have an obligation to develop appropriate, feasible, sustainable public health surveillance systems” (WHO, 2017). This can however be a slippery slope as we grapple with where the line is drawn – is it at name reporting or contact tracing or at quarantining? (Fairchild, 2007). It is imperative that we do not repeat the mistakes made in the case of Typhoid Mary or more recently like the Cuban HIV sanitarium.
However, it has been more acceptable for society to adopt a strong paternalistic approach to smoking. Governments have responded to smoking with varying degrees of taxes, bans on advertising, bans on public smoking. The acceptability of paternalistic interventions stems from the difficult answers to the following questions. Are smokers rational or helpless? Are smokers really choosing to take the risk and do they understand the harmful effects of smoking? How do we negate the cognitive defects? (Goodin, 1989) How do you view the problem given that onset of smoking happens during the teenage years? (Sallum, 1998) The only way to have stopped those who wish they hadn’t started smoking is to deploy coercive measures, so do we need to save them from themselves? (Conly, 2012).
The issue here is that “treating risky behaviour like a contagious disease” is yet another slippery slope. Can the paternalistic interventions into smoking be extended to obesity? When does it become acceptable to treat adults as if they are incompetent? (Sallum, 1998). Additionally, in sharp contrast to the human rights lens through which AIDS is viewed, is the active effort to denormalize smoking. The goal has been to create a social taboo around smoking that in effect sanctions “stigma, humiliation and discrimination against smokers”. This strategy, combined with the lack of scientific evidence for some claims such as the environmental impact of cigarettes can lead to an erosion in public trust that in the long term could be detrimental to public health. (Bayer 2013)
Grass Roots Activism
The bottom up activism of non-experts was a powerful component of the response to AIDS. (Keefe RH et all, 2006). At its core, was the willingness of those affected to provide personal and emotional testimonies, elucidating very vividly that AIDS was very much a social disease. The social movements empowered those affected with information and expertise, uniting them in shaping public opinion and effecting policy change. The AIDS Coalition to Unleash Power, one of the best examples of organized global activism, was a potent force that was not afraid of channeling suffering into radical, bold and unpopular action.
In contrast, advocacy in tobacco saw small, disparate and dispersed efforts and a broad social movement has never really taken root. This may be attributed to the lack of an emotional response to the issue (Bayer and Bachynski, 2013). While the AIDS non-expert activist movement probably gained from mainstream champions like Jonathan Mann, large national organizations such as the American Lung Association, American Heart Association, and American Cancer Society were skeptical and indifferent to local activism, instead favouring sweeping interventions such as taxes and public smoking bans.
Big Money, Dirty Business
While the AIDS response has been able to some extent co-opt big pharma, big tobacco is unfortunately the force resistance.
The pharmaceutical industry has been both an ally and roadblock in the war against AIDS. Some companies have agreed to supply medicines at reduced prices, primarily in developing countries and competition from generic manufacturers has helped scale treatment access. However, an IP regime that strikes a balance between human rights law and incentivizing research has proven elusive and there has been much deserved push back against the attempt by patent holders to control prices and maximize profits.
The tobacco industries fed the “cult of the cigarette”. They developed extensive marketing and advertising ensuring ubiquity of the product and deliberately engineered a product they knew to be addictive. When risks about smoking came to light, they dissembled and lied about them, proffering unsubstantiated health claims and used their muscle to push back against regulation. (Brandt, ). The logical response that follows is the loss of their liberty because they harm people by manipulating them into making bad choices
The Long Winding Road Ahead
While AIDS is not the death sentence it used to be, 36.9 million people were living with AIDS in 2017 (WHO). The challenges faced by patients from marginalized groups such as MSM, people of colour, low socio-economic communities, sex workers, drug users, low income countries continue to be daunting and it is crucial not to lose sight of the human rights element. (Open Society, 2007)
The battleground for tobacco control has shifted from high to low- and middle-income countries with around 80% of the world’s 1.1 billion smokers living in the latter. (WHO). While there is no real debate around civil liberties in these countries, they have lagged in the implementation and enforcement of laws to control smoking though lessons from the US are certainly transferrable. Governments are also struggling with the response to vaping and need to reconceptualize a response that balances the benefits of a safe alternative for smokers and the costs of enticing a young generation into smoking.
In dealing with issues such as drugs, guns, obesity, new outbreaks infectious diseases such as ebola, swine flu etc, we must reflect on the past responses to AIDS and smoking. Should we not use the human rights and activist approach to drugs? Can denormalization work for gun control? Should obesity be tackled in a manner similar to AIDS rather than smoking? Where can you co-opt big money into your response – with big pharma in the control of infectious diseases and drugs, maybe the food industry against obesity. What lessons can we draw from dealing with big tobacco against the weapons industry? Ultimately what is the answer to the public health conundrum – does the law have a healing hand or is it a fist?