90% of people living with Type 2 Diabetes in Belgium developed Type 2 Diabetes due to a lack of treatment of obesity as the chronic disease that it is.
Introduction
Find out more about your Citizens rights to accessing healthcare in Belgium
In Belgium, a patient rights law has been in place since 2002. This law guarantees that every person who receives health care has multiple rights. This way we as patients know what to expect and the healthcare provider knows what is expected of them. This ensures a clear relationship between healthcare provider and patient. Good communication is a driver for quality care.
However, this is not the case for obesity despite having been classified as a metabolic disease since 1948. In 2022, the 20th anniversary of the Belgian Patient's Rights Act was celebrated, yet it has had remarkably few revisions in those 20 years. In the meantime, the numbers of people living with the chronic disease of obesity have risen exponentially in Belgium. Likewise, the scientific understanding and potential solutions for early diagnosis and screening, treatment and long-term management have also substantially evolved.
Testimony after testimony as well as research now conducted by Pacte-Adiposité | Adipositas-Pact in partnership with VUB and KU Leuven clearly demonstrates that much more remains to be done.
Pre-obesity (overweight) and obesity are medical conditions marked by an abnormal and/or excessive accumulation of body fat that presents a risk to health ( WHO 2019 ). Obesity is a chronic relapsing disease ( WHO 2022 )(pdf), which in turn acts as a gateway to a range of other non-communicable diseases, such as diabetes, cardiovascular diseases and cancer.
Purpose of the Charter
- To achieve the best possible health and quality of life outcomes for adults living with obesity in Belgium who may or may not already be conscious health system users for this medical condition.
- To represent an aspirational ideal against which policies, system and practices are developed, monitored, delivered and evaluated.
- To view and see the laws, policies and practices around the Belgian Patient Rights laws through the lens of implementing for obesity health outcomes
Notes
- This Citizens' Charter for the Rights of People Living with Obesity in Belgium is not a guarantee of these rights, nor is it legally binding.
- This is the current version of Citizens' Charter for the Rights of People Living with Obesity in Belgium but as a living document, it is also subject to annual review, and a procedure for the Charter’s further evolution will be established.
- Please see the attached appendix to this document which lists the organisations who have ratified Citizens' Charter for the Rights of People Living with Obesity in Belgium and given permission for their logos to appear on this document and any subsequent materials.
About the Organisation
PA-AP (Pacte Adiposité – Adipositas Pact) is a non-profit Private Foundation established under Belgian law, led by citizens of lived experience with obesity representing our rights towards access to healthcare.
Founded in February 2021, its main purpose is to convey the authoritative voice of citizens with respect to evidence-based approaches for obesity prevention, treatment, ongoing management along the life course through policy change, by facilitating knowledge exchange, citizen-led research and advocacy.
The Charter
A protected legal status for the 4.5 million People Living with pre-Obesity and obesity in Belgium
Guaranteeing the legal status of people living with obesity as with people living with the other policy-prioritised major chronic diseases (NCDs), is a basic human right in the Belgian context.
Providing People Living with obesity the legal status of being protected under the right to non-discrimination on the grounds of past, current or future health status can only provide a benefit for not only the conservatively estimated 50% of the Belgian population already living with obesity, but also could substantially lower the 90% of people going on to develop Type 2 Diabetes, and more than 200+ medical complications of obesity.
- Belgian health actors from government to Sciensano, Riziv/ INAMI will adopt and implement WHO's definition of obesity enshrined in ICD11 and adopted by the European Commission in 2021
- Obesity will be specifically included in the policy-prioritised chronic diseases health system framework in Belgium with its own National Plan for disease management for early diagnosis and screening, acute treatment and long term management coordinated at Federal level.
- People living with Obesity in Belgium shall specifically be named as a "protected" population under the Patient Rights legislation and Policy initiatives.
- People Living with Obesity will have access to complaints to UNIA for discrimination on the grounds of current or future health status in Belgium.
- People living with Obesity in Belgium (regardless of ethnicity or legal status) will be proactively informed about their rights under access to healthcare for obesity under the law.
- People with Obesity will not only continue to be named as part of the "vulnerable population due to pre-existing medical condition" in Pandemic preparedness
The right to a quality service from early diagnosis and screening through to treatment and long term management.
The Belgian Quality of Health care Practice – Law of 2019 - the right to a quality care delivery service, as well as the 2011 European Directive on patients' rights in cross-border healthcare guarantees patients the right to be informed, but also the right to be reimbursed for both cross-border care and care provided in Belgium.
However, in the case of obesity, this is not a reality for many. Around 80% of surveyed individuals in Belgium reported good possibilities for medical help with obesity, but highlighted issues with long-term follow-up and multidisciplinary support. Respondents noted a lack of mental support and that the focus on behavior was excessive, with inadequate attention given to other factors.
Our situational analysis clearly demonstrates that where particular services are technically available, they may not be generally accessible due to affordability considerations , lack of sufficient trained professionals to deliver the service and/ no uniform coverage across Belgium.
A Roadmap should be developed (including an implementation plan) to allow for a stepped-care approach to obesity as a chronic disease to include both the physical and mental health aspects to this medical condition.
View the Stepped Care Model - reviewed and endorsed by Pacte Adiposité |
The Roadmap should include:
- An evaluation of the extent the Belgian health system for the diagnosis, treatment and long term management of obesity is fit for purpose with a focus on what matters to People Living with Obesity taken at the centre of reforms.
- Creation of long term registries for people at risk of developing and also those already living with the biology of obesity throughout our life course. These registries should be interconnected with other major medical complications of obesity (cancers, different types of diabetes, cardiovascular diseases, respiratory diseases and mental health and neurological disorders).
- Patients, health professionals and policymakers as well as related sectors, should all be continuously educated on the biological underpinnings of obesity and how their area of work can impact health outcomes.
Patients, health professionals and policy makers in our survey wrongly mentioned food intake as the most important root cause of adult obesity.
The scientifically proven root causes such as hormonal factors, side effects of medication and a lack of sleep were considered as least important root causes of obesity.
A right to access to early diagnosis and screening for obesity in its own right
People Living with Obesity in Belgium call for a roadmap to be set in place to allow the development and integration into the system for obesity screening programmes with related guidelines for health professionals and education for patients so that we understand the signs and symptoms to look out for at the early stages of the onset of obesity or if there is already a family history. This will enable patients to be full partners in our health.
Within this context, provision should be made by the health system (and related reimbursement authorities and insurers) for:
- A full set of diagnostic tools for the early diagnosis and screening of the biology of obesity in its own right and not only when faced with the onset of medical complications. These tools would address the biology of obesity and not wait until there is the outward sign of increased BMI.
- A section on the diagnostic and medical testing prescription scripts for biological markers for obesity such as elevated triglycerides, insulin resistance etc, with related reimbursement as is currently the case for Type 2 diabetes.
- Monitoring of data concerning patients living with obesity should be improved to enable better tracking of unmet needs of patients living with obesity and to provide solutions for them
Access to acute interdisciplinary treatment and long-term management
All people in Belgium have the right to choose our own healthcare providers. For the treatment of obesity, there are many hurdles to overcome to make this a reality. In the case of obesity, the majority of treatment and long term management happens outside of the specialist obesity centres, with family doctors/ polyclinics and community-based health professionals.
Our study signalled that the majority of patients, health professionals and policy makers did not have an indepth understanding of obesity and primarily describe it by overweight. Nevertheless, respectively 68% and 57% of participants reported feeling well informed about what obesity is and how it should be treated and managed.
- People Living with Obesity in Belgium, should have the right to access the full menu of psychological, physiological and pharmacological treatments applicable to obesity in its own right instead of the current situation of only accessing to prevent the 200+ medical complications of obesity
- These treatments should be accessible along the lifecourse and for long duration in line with the chronicity of obesity.
- In particular, People with Obesity need to have the confidence that their healthcare providers at primary care level (Family Doctors and polyclinics, community pharmacies, community nurses, physiotherapists, dieticians etc) have the knowledge and expertise to treat them appropriately as well as accompany them on the long-term supported self-management. As such, patients should have access and be trained on how to prepare for consultations with specialists and family practitioners.
- People with Obesity need access to specialized obesity centres, if needed, where a multidisciplinary team led by an endocrinologist can provide all tools available if needed. This team should consist of endocrinologists, psychologists, specialised dieticians, specialised physiotherapists, and abdominal surgeons
- Many patients in Belgium do not have French or Dutch as their first language. This is particularly the case for people living with obesity who are disproportionately represented in the non-Belgianborn population. As such, People with Obesity should be proactively made aware of their rights to have a professional interpreter in their native language when attending medical appointments
- Belgium’s unusually complex coverage policy should be simplified and a plan put in place to reduce co-payments and other out-of-pocket payments, particularly for low-income households (as per the WHO Report published on 28 February 2023 Can people afford to pay for health care? New evidence on financial protection in belgium (who.int) which
- Abolishing retrospective reimbursement for all health services;
- Extending the annual cap on co-payments to all health services and lowering it for people with very low incomes;
- Granting automatic entitlement to everyone eligible for increased reimbursement (reduced co-payments);
- Limiting balance billing in outpatient and inpatient care;
- Strengthening regulation of the price of non-covered medical products
The right to free choice of your healthcare provider
Patients in Belgium generally have the right to choose their own health practitioner which is most appropriate for their particular medical and health status. This is currently not the case for People Living with Obesity due to a shortage of trained professionals on the one hand and systemic bias which can also lead to discriminatory practices towards people living with obesity throughout the diagnosis, treatment and long term management of the medical condition. In light of the move towards centralising of care in primary care (Family Doctors and Policlinics), the existing barriers are at high risk of substantially escalating if not addressed for People Living with Obesity.
As a confluence of circumstances that the whole of society constantly condemns you for, and meanwhile you flounder on as a person with obesity
~(Patient)
To overcome such a large unmet medical need, steps should be taken by the government, University Associations for Belgium and where appropriate The Netherlands and Luxembourg and related health insurers to:
- Introduce compulsory education modules on treating obesity in a multi-disciplinary way
- Including expert patients in building the practical use cases for such education
- Stipulate that "conventioned" as well as "non-conventioned" health professionals have received 60 credits worth of obesity education during their basic training and also have a set amount of ongoing professional development points that they should achieve on topics along the chronic disease continuum to keep up to date with "state of the art" in obesity early diagnosis, screening and long-term management.
The right to information about your state of health
The right to patient information in Belgium is enshrined in law and practice. However, this assumes that all patient primary health data s collected as part of the Electronic Health Record. This is not the case for People Living with Obesity who undergo physical therapy, psychological therapy and therapeutic nutrition as well as some elements of social prescribing. Not all of these may be offered as part of an integrated medical service or by "conventioned" health practitioners
Our study signalled that 95% of participants indicated the importance of having access to their health data on obesity. But the usefullness or comprehensibilaty of the provided medical information is doubted by participants.
Is far too little information in it that we, the non-doctors, can understand, everything is too much in medical terms
~(Patient)
With the ongoing work on digitalising all health information and making it accessible to patients (Health Dataspace), more remains to be done specifically for People Living with Obesity; particularly because it is associated with 200+ medical complications. As such:
- The incoming Belgian Health Data Agency should be mandated to collaborate with People Living with Obesity and other interested parties to ascertain the types of data that should be collected (and what is missing) with a view to patients being empowered to be a true partner in our own health.
- As part of the digital agenda for Belgium, Government agencies should proactively seek to publicise patient-friendly sources of accurate information on the biology of obesity and health impact.
- People with Obesity should have the right to provide deeper access to their health information to Primary Care health practitioners, community pharmacists, Psychotherapists and other related health professions.
- People with Obesity should not have to remember to opt-in to receive information on their electronic health record for every instance of lab test, consultation or prescription.
Rights concerning primary and secondary use of our health information
Generally speaking, patients in Belgium are not very aware of the options as to how their data is used for clinical decision-making or for research/ population level monitoring. This is even more pronounced for People Living with Obesity
People Living with Obesity in Belgiumcome with a varied lived experience which is currently not captured in any of our health information or at population level.
- Patient reported outcomes should be designed and implemented involving People Living with Obesity
- Patient Reported outcomes should be integrated into the National Health Survey and related Sciensano studies
The right to participate in shaping, monitoring and evaluating the healthcare system from policies to practices
Generally speaking, patients in Belgium are not very aware of the options as to how their data is used for clinical decision-making or for research/ population level monitoring. This is even more pronounced for People Living with Obesity
People Living with Obesity in Belgiumcome with a varied lived experience which is currently not captured in any of our health information or at population level.
- Patient reported outcomes should be designed and implemented involving People Living with Obesity
- Patient Reported outcomes should be integrated into the National Health Survey and related Sciensano studies
Acknowledgements
The Foundation for the Rights of Citizens with Obesity is a non-profit Private Foundation established under Belgian law, led by citizens of lived experience with obesity representing our rights towards access to healthcare.
This project has been driven by and for us in collaboration with VUB and KU Leuven as Research Partners.
We would also like to acknowledge the financial support and contribution of expertise as part of the multi-stakeholder focus groups from Novo Nordisk Belgium, J&J Belgium and Third-i bvba in the realisation of all elements to this initiative.
Research Partners
Dissemination Partners
