Stigma and health care
Presented originally at the Drug Policy Alliance Conference, 24th October 2013, Denver, USA
The history shows us not only the different identifications that have been applied to people who use drugs (PWUD), but also a sort of story and proposed evolution. I think we should add another ID. Let’s see.
Probably some of you already know how stigma was built from the twentieth century and reinforced while drug policies became inefficient and also more and more inhuman, moralistic and violent. Because I’m a doctor I’ll try to focus on the Medical Doctors’ and treatments contribution to this stigma.
I’ve noticed that when health professionals talk about prohibitionism, usually stigma is not considered as a negative consequence that distances PWUD from help and makes the situation more serious. This could be explained because they aren’t aware about how much pain they cause, because they are being cruel, or they still haven’t realized that, among other factors this is a consequence of their attitude towards PWUD.
WHAT IS THE SCENARIO RELATED TO CLINICAL ASPECTS AND DRUG ABUSE TREATMENT? (particularly in South America, but not only)
¬ Drug abuse treatments are not indicated according to a diagnosis.
¬ Frequently they are dogmatic and ritualized.
¬ No social justice for PWUD: they can’t choose the treatment, as not all treatments are available for all of them, depending on economical conditions.
¬ Drug Abuse treatments are not evaluated and controlled in the same way as any other health service.
¬ No qualification required to work on treatments.
¬ No ethical requirements: patients and human rights are systematically violated. As an example, one of the most frequently violated rights is that of confidentiality. PWUD are very often exposed to people telling their dramatic stories and used as institutional propaganda.
¬ Ignorance about scientific issues added to escalation concept means that each Person WUD is thought of as problematic and in some countries obliged to treatment (Portugal, Argentina).
¬ This situation is complemented with therapeutic justice that depending on the country can be applied to every Person WUD, not only when they make “mistakes”. So, very often, treatments are the health arm of the law, and treatment and repression become synonymous.
¬ Clinical descriptions generally show them as a personality disorder; frequently, the antisocial type. The relationship between drug use and criminality makes it more difficult to think about them differently to a criminal.
¬ Bad quality treatments are common and generally they are oriented to abstinence and to treat the behavior disorder instead of the dependence itself.
¬ In comparison to any other health problem, there is a poor development of specific treatments for the dependence.
¬ Bad treatments and the consequent poor results support the idea of failure and of an irrecoverable patient. So people, including their families, abandon them. Worse life conditions create sustained exclusion, worsening of clinical and social conditions, and so on.
How did it come to the situation where health professionals can sign up or participate in the implementation of many of the health care responses that violate the rights of patients, not promote their entry into the health system and darken the prognosis?
How is it that there are not malpractice complaints against these types of interventions and that there is no regulation of what is possible to do and what is not possible in the name of treatment, as with any other disease?
It is possible because the warmongering logic that crosses all drug-related policies has also determined these “therapeutic” actions. The drug war enables the kind of “treatment” that “rescues” PWUD and exhibits them as war booty.
Prejudice and morals also determine what we can do and what we cannot do regarding health education and public health approaches: Harm Reduction strategies are considered apologetic and a defense of drugs and drug use when applied to illicit drugs, despite of the fact that they are the most effective tools for public health campaigns for alcohol and tobacco. So, it seems to me that the problem is not HR itself but the legal status of substances.
Being a pressing health problem, it is noteworthy that strategies to preserve the quality of life and survival of the people may not be systematically implemented as part of a comprehensive policy. I believe that once again, the traversal of the illegality affects health responses.
The stigma attached to PWUD and drugs does not allow this population to benefit from public health measures. Between 60 and 80% of them would never ask for help and especially from physicians. I understand that this is directly related to the role that doctors have taken on this issue. They have not defended their health rights as they have for other citizens and have abandoned them to programs built on worldviews that have little to do with science.
But there is a component of the stigma that has particular interest. I am referring to the concept of chemical dependence.
What is the problem with being chemically dependent? I think that the problem is that this physical condition –chemical dependence– is viewed as an anti-libertarian value. The system of beliefs and values of the model with which we integrate into the dominant culture perceives chemical dependence as a counter-value of the moral and human ideal, which does not tolerate certain vulnerabilities. The social mandate is that we have to be free of substances and chemical dependence undermines the ideal of that freedom.
How did we come to this? My intention is to present some guidelines to think about the role played by Medicine and Physicians in the construction of stigma, but I will focus only on certain aspects.
In the early twentieth century, Uruguay and the western world based their welfare states on medical mainstream positivism, thanks to which many epidemics that caused illness and death were controlled. At the same time, the medical discourse and preaching started to be increasingly radicalized towards control of the body and of social customs for the betterment of the human race.
Drug use became viewed as a symptom of moral and physical degradation based on the few extreme clinical cases but also because a part of the user population was linked to prostitution and crime. Drugs began to be declared a social danger.
In this context health ministries became the police of social vices. In 1934 the charter of the Ministry of Public Health of Uruguay stated so, literally. The laws and conventions create the category “drug user-criminal-trafficker”, and so they began to be treated similarly. Thus, health policies and their philosophical currents actively supported the construction of the stigma. The sense and style of the health teams’ practice in the control of PWUD define the future of the relationship between each other.
Medicine taught me to think about the problem of drugs from a HR perspective and its ethical axes placed me where I am. It allowed me to understand that, as with many other diseases, the best results are achieved with a friendly and negotiating attitude towards patients, defining together the process and the realistically achievable goals, but also considering their possibilities and expectations. Fortunately when I was studying, Drug Abuse wasn’t taught at the Faculty. So I simply applied concepts of general medicine and toxicology to understand the signs and symptoms, empathy to perceive the person, and common sense and medical ethics to act.
Therefore, what has determined the alignment of physicians in the prohibitionist ranks is not Medicine itself, but the historical moments, the philosophical currents, the geopolitical circumstances and the human condition that cross it.
The role that doctors have taken on this issue, obviously not all of them, but most, has more to do with power and to assert that power, they use medical knowledge. It is not a power to accompany patients and enhance their quality of life as in any other disease. It is a power to determine ways of life bearable for the dominant culture imbued with a moral idealism, very different from the humanitarian one.
Real medical knowledge is that which sustains HR policies, programs and practices.
Applied to PDU, the concept of Public Health has also been subverted, disrupted in the service of a moral issue: determining categories of citizens according to their choices and a moral ideal that people must match. Physicians abandoned the ethical pillars of Public Health.
What happened to the Doctors who left their place, thought and ethics as such?
The Uruguayan journalist Guillermo Garat in his study “Marijuana and other herbs” gives us some clues to begin to answer this question. The “Medicalization” of Uruguayan society, but not just ours, has made held important contributions to public health and particularly with respect to some diseases decimating populations.
Those who fell into the glare of the demonization of narcotic substances, contributed to the progressive worsening of the situation, extrapolating the concept of epidemics of infectious diseases to drug issue. The Hygienist vision won the scene. A properly applied vision contributed to the survival of millions of people and more recently also helped to control successfully the AIDS epidemic. In this case, it wasn’t the old linear and reductionist version of Hygienism, but an inclusive, integrated and comprehensive one.
Drug issue is far more complex than infection. It includes dimensions like pleasure, cultural context, geopolitical and economic aspects, interpersonal relationships, belongings, and more. Therefore, it cannot be approached from a simplistic conceptualization and with rigid moral visions.
WHAT CAN HR DO?
We have to work smartly and hard to influence cultural resistances and those actors who, despite the shocking evidence of the failure of prohibitionism, cannot release it.
I think that for the public and some physicians these resistances among other things, are fear and not knowing what else they could do without losing control, because they cannot imagine PWUD other than as difficult patients and criminals. Obviously there are also some who have an interest in keeping things like they are today for their own profit. There’s nothing we can do with them.
But with the other people…
The arguments we have offered for change, although they have their benefits, don’t have the massive support of the public and physicians, except in Colorado and Washington. So, we need to integrate more strategies and perhaps change others.
Some of them might be the following proposals. There are more, but I’ve chosen four axes: THEORETICAL, SCIENTIFIC, ETHICAL, COMMUNICATIONAL, LEGAL AND COMMUNITARIAN
1) THEORETICAL: Change the definition of the problem in the public scene
We should promote debating about PDU as a problem built on geopolitical factors plus the postmodern culture model of socializing and regional factors that determine socio-sanitary and criminal consequences, demonstrating the relationship between conventions and prohibitionism with population suffering.
In addition it would be helpful to take the issue to the field of citizenship for PWUD, general public, politicians and professionals involved, highlighting that citizenship is the exercise of rights and responsibilities for everyone.
Health professionals (also policy makers) have the responsibility but also the right of giving answers that should be ethically correct, demonstrably effective and appropriate for the problem.
2) SCIENTIFIC: Conduct scientific research in order to be able to develop evidence based treatments, rather than interventions based on beliefs and morality.
For example, there is evidence provided by observational studies that suggests the effects of herbal cannabinoids to reduce and even stop the use of more dangerous drugs such as basuco /pasta base (coca paste), alcohol, and heroine. There are also preclinical studies that could explain the “substitution effect” of cannabis.
However, randomized double blind placebo controlled clinical trials are required to assess the safety and efficacy of cannabinoids for this purpose. In several countries such as Uruguay –and in our country even before cannabis was legalized–, current laws allow clinical research with substances listed I if the ethical committees and Health Ministry approve the protocol. But, in fact, differently from what happens with studies with compounds –even of high toxicity– from the pharmaceutical industry, clinical trials with cannabis or other drugs are exceptionally approved. Regarding schedule I substances included in the drug conventions, the possibility to make reasonable decisions is hampered with prejudices, moral conceptions and political interests, and so, research projects are obstructed even if these substances could help in health problems that have been declared to be a priority.
In Uruguay, the first protocol of a clinical trial with cannabis for smokable cocaine has been presented at the ethical committee and Health Ministry.
In summary this study will administer cannabis containing different concentrations of delta-9-tetrahydrocannabinol and cannabidiol to paste base dependent individuals by vaporizing the flowers, and placebo to the control group. It has been designed following the NIDA protocol validated for stimulant drugs, and will take place at the hospital of the Medicine Faculty, with the participation of six departments: Toxicology, Pharmacology, Psychiatry, Nuclear Medicine, Medical Psychology and Methodology.
3) ETHICAL: Analyzing and assessing health interventions in terms of quality of professional practice and results.
This analysis necessarily involves the review of professional practices in the light of the ethical frameworks of the different professions related to the health field. This should involve medical doctors in changing their ethical position, helping them to become aware about the serious ethical conflict in which they are.
I invite my colleagues to reflect on their current role and not to be uncritically dazzled by signs and symptoms, which they have to learn to be interpreted differently. Let’s see people and not illness or transgressors. Doctors have participated in the construction of stigma and now it is imperative to understand that they have to work to deconstruct it.
Try to consider the alternative of approaching PDU from our medical ethics and with non-moralistic information. Physicians have much more to offer. It would be better to give up this sad role of pretend experts in the subject and start being just doctors to build new knowledge that could improve the life of people, of all people.
I think the problem is not in understanding addiction as a brain disease or condition. The problem is that there are moral and cultural values related to DU that categorizes chemical dependence as a lower moral status.
There are some mental health concepts that are associated with a moral condition. In fact, some treatment programs and philosophies talk about dependence as a disease of the will, a weak will. A strong will is considered a superior moral value and therefore a linkage of the disease with moral failings is established.
I think once again Medicine could favor the process of taking drug users out of stigmatization. Establishing chemical dependence, as a biological change and not a moral failure, could help them to leave their currently assigned place where they represent an anti-value, to become a person who might become sick.
No other people with chronic diseases are stigmatized except those that represent an anti-model for human perfection. Mental health related ones are stigmatized but only those who represent the failure of the current human ideal.
We have to work hard in this regard because the stigma does not allow us to think with the freedom and rigor required by science and medical care.
The illegality of the substances has brought torpor, prejudices disguised as scientific concepts, and moralization of interventions, alienating physicians from the main objective of health care: finding answers to the sufferings of people. Illegality has focused medical doctors’ gaze on the dependence itself disabling them from considering whether or not it has an impact on people’s lives.
It is not true that being dependent is synonymous with madness, lack of control, behavioral problems and death. This will depend on whether the chemical dependence is stabilized or not. And this is considered by Harm Reduction treatments, substitution and prescription, and also strategies to diminish consumption of dangerous drugs, such as like the “substitution effect” of cannabis.
Hundreds of thousands of people with chronic diseases rely on medication to have a good quality of life, a medication that does not heal. It alleviates the course and symptoms of the disease, enabling people to live an acceptable quality of life.
I propose deconstructing the stigma by reclaiming and updating the observance of the ethical pillars of Public Health:
- FIRST NO DAMAGE
- DOING GOOD
- SOCIAL JUSTICE
- RIGHT TO SELF-DETERMINATION
Those physicians practicing in countries where they are accountable to the law of denouncing patients who use drugs or where there is compulsive treatment, we encourage them to rebel and oppose to that function and those methods. These laws do not encourage PWUD to ask for help for any other reason than abstaining. They also have other needs and by treating them we open doors to the health system and work against stigma.
And from this follows the forth strategy:
4) LEGAL: Continue working to change drug laws and conventions reinforcing what has been done so far to claim loudly for human rights.
Marijuana legalization is a clear harm reduction measure that would improve the current scenario by lifting the blinding veil; a veil that has not allowed health practices for PWUD to be framed within the ethical pillars already mentioned.
5) COMMUNICATIONAL: Promote public education through mass media and social networks to generate a cultural change.
And for this, a change in the general population’s mind is needed. Therefore, they have to be systematically informed about the new knowledge coming from scientific and socio-political research that should be disseminated in understandable codes. Findings of research, negative consequences of the war on drugs and prohibitionism, and good practice examples of evidence-based treatments have to be spread in order to answer people’s questions and doubts, help them to clear their confusions and misconceptions around this topic. At the same time, prevention and harm reduction tools should be offered. Mass media could help to democratize information if we provide them material to do their job, just like prohibitionism has been doing, and as a result we will be working against stigmatization of PWUD by changing the collective imagery.
6) COMMUNITARIAN: Increasing implementation of community-based treatments in which PWUD have citizenship roles. By working in those programs they can be involved in neighborhood activities and working on health issues. For this, they can be trained in CPR, first aid, caring for sick people, etc. These approaches certainly transform their social place and promote the deconstruction of stigma, as they can be perceived as providing services to the community.
These aims can enable a further step to progress in the process of changing the place of PWUD in society and diminishing the stigma:
From SINNER to CRIMINAL to SICK to HUMAN to CITIZEN, a citizen who might become sick.
Ph D. in Medicine
Dr. Raquel Peyraube, MD, is Politics, Education and Public Health Clinical Director of ICEERS (International Center for Ethnobotanical Education Research and Service). She is specialist on Drug field with 28 years experience. Throughout her career she was involved in training, prevention, treatment and drug related harm reduction, including innovative theoretical and methodological developments with an emphasis on ethical issues, which earned her regional and international recognition. She has been advocating drug policy reform for almost 20 years during which she has worked in several developing countries. She is advisor ad hoc of the National Board on Drugs (SND) of Uruguay in the reform of the public drug policy and the Institute of Regulation and Control of Cannabis (IRCCA). She is a member of the Network of Experts and Consultants for monitoring and evaluation of the Law of Cannabis Regulation in her country and of the New York NGOs Committee preparing UNGASS 2016. Currently she is mainly dedicated to the development of protocols for clinical trials, medical cannabis education for physicians, and advocacy work and consulting on Drug Policy Reform in different countries of Latin America.