By Jolijn Santegoeds, 9 December 2020
Concerns about pharmaceutical marketing and the medical model
The first concern arises when noticing the typical patterns deployed by pharmaceutical markets. This could be the elephant in the room. For persons with psychosocial disabilities, the mistrust towards the pharmaceutical industry is real for many people. It is the result of oppression over decades. As a person with negative experiences with psychiatric drugs, a number of concerns regarding the vaccine development and its market positioning got my attention. There are differences and similarities between COVID19 vaccines and mental health medication.
First of all, COVID19 is a traceable virus and its vaccine is merely a medical intervention, unlike the mental health field where diagnoses are ‘defined’, and pharmaceutical products have varying effects on people, including very harmful, disabling and detrimental effects. The pharmaceutical industry never came up with a sense of responsibility themselves for the known harm caused by their mental health medication , including its administration under force, which left many people traumatized.
There is a substantial difference to the degree of evidence based science behind medical interventions compared to the mental health medication, which has a far less credible basis. The argument that a medical condition would require a medical response is shared by many people. The vaccine development in itself is therefore a logical response to the pandemic.
However, as an observation, the publicity on the COVID19 vaccination shows a disturbing overlap with the mental health marketing model, especially by linking medication (vaccination) to economic output and liberty. While obviously, vaccination is a health issue, and not an issue of liberty or economy. The publicity should better focus on “what does the vaccine do to a person” instead of semantecs about “expected economic outcome of taking medication”. Economy is a different sector, and pharmaceutical products should not be linked to such claims. Vaccination is a health decision and as such it requires detailed information about possible and expected health outcomes.
To share a critical view: The “economic burden of disease”-model is actually a default marketing model of the pharmaceutical industry, focussed on portraying needs and importance of treatment and often positioning medication as only solution (medical model).The marketing model of the “economic burden of covid-disease” corresponds with the marketing of the “economic burden of untreated mental health”, creating a fearful and costly image, coupled by raising high expectations about the pharmaceutical products, such as the vaccines efficacy above 90%. Obviously, the pharmaceutical industry represents the medical model, and as such, they act in a tunnel vision of promoting medication, as seemingly “quick solutions”, pushing any alternatives to the shadows. And indeed, when you ask the medical sector to come up with a solution for the pandemic, it may not be surprising they come up with a medical tool. And indeed vaccination could actually be an effective way to prevent and reduce the spread of the pandemic.
Yet, the alarming part is that in parallel with the horrendous situation in institutions under COVID19 measures, the pre-existing situation in mental health institutions already highlighted the risks of a singular focus on the medical model, and on risk-management instead of ‘recovery-management’, forgetting to focus on quality of life, merely locking people up, claiming how vulnerable they are without medication. In parallel, the focus on vaccination and lockdown-measures is currently similarly overshadowing the quality of life in institutions. Perhaps it is good to stay critical to the developments. Similar to the mental health advocacy, a strategic critical counterpressure to ensure balance of perspectives may be needed, especially when noticing the striking overlap of market positioning and medical model tunnel vision, which seems to leave out the human rights context of those concerned, deliberate or not.
Concerns about possibly ‘partially experimental’ vaccines on persons with disabilities
Another concern regarding the role of the pharmaceutical industry surfaces in the practical choice to prioritize persons with disabilities for receiving the first batches of vaccination. Considering the fact that the development of the vaccine was done under extreme time pressure, and testing processes were speeded up, the vaccine may not feel equally safe to all people, and some would call it ‘partially experimental’ vaccines. Vaccination will require trust in the integrity of the sector. Subjecting persons with disabilities to the first batches of possibly ‘partially experimental’ medication evoked many thoughts about whether this is coincidentally resembling scandals of medical and scientific experimentation on this group of persons, or whether it presents a genuine act of caring. An indicator of integrity could be whether actions be taken to prevent any harm, such as guaranteeing the free and informed consent of each individual.
Practical concerns about free and informed consent in vaccination in institutions In order to make decisions, people need information about the options and consequences, and some persons may have support needs in understanding the information or in identifying their preferences. However, if the person is deemed incapable (which may be often the case in institutions), and while taking into account the existing oppression, it may be hard to have a meaningful conversation with the staff. In a worst case scenario people may not even be informed but just rounded up not knowing what is happening, or assuming it is just any medication. And in fact, institutions may have undue influence since they do have a stake, e.g. simplifying policy making with mass vaccination.
Any instance of vaccination mispractice should be reported, and the place to report mispractices should be known to the public. Abuse may include: influencing decision-making, denying or forcing vaccination, reprisals or manipulation, unfriendly service. Active monitoring is recommended, e.g. interviewing people in institutions about the process of decision making and vaccine provision.
Perhaps the staff in institutions may not be the right ones to communicate or administer the vaccination. Especially in the context of forced placement and forced treatment, the staff in the institution may not be fully trusted by the users, and existing conflicts between staff and user can give complications (e.g. default rejection). Persons in restraint and seclusion are probably devoid of any social relation that would enable them to have a meaningful conversation with any of the staff. External persons, such as NGOs could perhaps come in as a neutral person to discuss this particular decision on vaccination. Moreover, all persons under forced treatment, forced placement and guardianship need to be contacted by a neutral person for the purpose of decision making on vaccination, since the element of involuntariness indicates they have a current disagreement with their existing network. The persons under guardianship, forced placement or forced treatment should be free to appoint their own assistant or person of trust to communicate their choices. Perhaps monitoring bodies, NGOs, other social service staff etc. can be useful to enable persons to make a decision independent from the guardian or institution. In some institutions this would be hundreds of persons.
Especially in neglected places, where meaningful conversations are unikely to happen, it may be crucial to bring the necessary information inside actively, targetted to the users. It could also give staff a guidance in how to deal with the situation, how to have this conversation. For the purpose of information inside institutions, perhaps a video could be made, to inform people in institutions of their rights and what is at stake with the choice of vaccination. People and groups could watch the video, and be informed. This could alleviate the staff, who can still engage in individual support. Another suggestion is a local decision support council to support the users in the the decision making process and assist with information and consultation, e.g. comprising NGOs or family members.
The information provided to people inside and outside the hospital should be the same. Many persons with psychosocial disabilities are able to understand also general and complex information, and keeping this away from them may cause mistrust. Regular news or information should be provided and be available in the same detail as to others (and people can decide for themselves if they want to read it or not). Simple information should be provided in addition. Witholding information causes distrust and is illegal.
- See the next article: “Vaccination alone is not enough. The social consequences for persons with disabilities of a global emergency”
About Jolijn Santegoeds
EDF Board of Directors, Jolijn Santegoeds is a user/survivor of psychiatry. Despite the fact that the Netherlands is not considered as the most problematic country in the area of mental health services, Jolijn had to face a range of forced and degrading practices when she was 16 years old. The institution that hosted her forced her to isolation through others. Jolijn’s main activities are aimed at stimulating alternatives to forced treatments and the prevention of torture and ill-treatment in health care. In the context of the Dutch law reform on forced psychiatric interventions, she developed an alternative model, called the “Eindhoven Model”, which is based on using Family Group Conferencing for supported decision-making to avoid forced psychiatric interventions. In 2014, Jolijn Santegoeds became a Board member of ENUSP for the Northwest region. She is also a co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP), which aims to secure the rights of persons with psychosocial disabilities everywhere around the world. Since May 2017, she has been elected in the EDF Board of Directors.