Consultation Notre vision, notre voix sur la COVID-19 et Reconstruire en mieux

En 2020, la consultation Notre vision, notre voix entendait recueillir les perspectives des personnes vivant avec des MNT quant aux difficultés qu’elles rencontraient au cours de la crise de la COVID-19, ainsi que leurs recommandations pour reconstruire en mieux, et alimenter une Charte mondiale de la participation significative des personnes vivant avec des MNT.

174

Nombre de participants

44

Nombre de pays

Éléments clés

 

Les liens entre COVID-19 et MNT sont évidents, et notamment les fragilités des personnes vivant avec des MNT face à la pandémie de COVID-19. Nous disposons également de données de plus en plus nombreuses qui font état de tensions et d’obstacles dans la gestion quotidienne des MNT en raison de facteurs tels que les systèmes sanitaires qui ploient sous la pression de la pandémie, la distanciation sociale et les mesures de restriction des déplacements.

Dans le cadre de l’initiative Notre vision, notre voix, l’Alliance sur les MNT a consulté des personnes vivant avec des MNT par le biais d’une enquête en ligne, en vue de recueillir leurs expériences directes de la pandémie de COVID-19 et leurs recommandations quant à la manière dont les gouvernements peuvent reconstruire en mieux avec des systèmes sanitaires équitables, durables et axés sur l’humain, à tous les niveaux.

Les résultats de la consultation en ligne serviront également à alimenter une Charte mondiale de la participation significative des personnes vivant avec des MNT, prévue pour 2021, que les parties prenantes peuvent souscrire pour promouvoir une riposte aux MNT qui mette les personnes au premier plan.

 

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  • “Sugar tax, increased speed of cancer screenings/ operations/ treatment, massive increase of budget to mental health services - to equal physical health budget!”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “Because they are the experts in living with their condition(s) day in, day out! If you haven't experienced something you cannot ever hope to fully understand or empathise. So, you need this input - it is invaluable & necessary!”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “I would demand free medication, tests and personal protection for people living with NCDs as well as PPE for their care givers. I will also demand that health services for NCDs should be taken to the homes of the patients.”

    Care Partner, Cameroon

  • “I think because they are directly affected by the pandemic, they will make decisions that will be more meaningful due to the fact that they will be acting from experience. ”

    Care Partner, Cameroon

  • “Our health care system is not advanced enough to allow for affordable access to the new efficacious therapies for certain NCDs. In my case , the affordability of biologics is out of reach for most people and even for the middle class like myself, it cost me 2 months of my take home salary.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Malaysia

  • “Medical professionals and politicians are not in the know of the challenges that a diverse group of NCD patients face. There are many scenarios and it is always complex.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Malaysia

  • “I will plead with the government to restrict the consumption of alcohol,the use of tobacco and advise people to be physically active and eat healthy diet.”

    Care Partner, Cameroon

  • “I think they should be involved because they know how it feels to live with NCDs and what they can do to improve their state of health.”

    Care Partner, Cameroon

  • “First I must say that I do appreciate the effort the government has put into handling NCDs so far. However, before this pandemic, people living with NCDs were already experiencing alot of challenges when it comes to accessing quality health care. This is because we lack proper systems and structures. The pandemic has now made it worse, as all concentration has been diverted to the care of people affected by the pandemic. We would appreciate it if you could consider addressing some of these challenges. Thank you.”

    Person living with Cancer, Kenya

  • “As the saying goes, "Nothing for us without us". My thoughts are that no decision should be made about anyone who is still alive unless they've been proven to be insane. Again it's the shoe wearer who knows where it pinches. When people living with NCDs are involved in decision making, they shall share exactly what their challenges are and how/what can be done to make it bearable for them.”

    Person living with Cancer, Kenya

  • “Living with an invisible chronic illness, all I want is for my health care providers to actually acknowledge my symptoms and for the government to make it easier to get the help I need. ”

    Person living with Endometriosis , United States of America

  • “To please ensure the funding and focus required to research a condition like endometriosis. There have been 21 years between my flare ups and nothing has changed in diagnosis or treatment. Governments are letting down so many women every single day. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “Because we feel so far from decision making. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “Let there be a Quick,Integrated & Unified Public Private and All Civil Socities Team approach directed towards Recovery and Augmentation of Promotive, Curative & Preventive Healthcare at all levels, from villages to Cities, by complete Individual and Organisational efforts.”

    Care Partner, India

  • “Involvement of PLWNCDs with the decision making process through real-time sharing of experiences and solutions to the obstacles will have a meaningful and positive outcome on the NCD programme.”

    Care Partner, India

  • “Endometriosis is not an elective disease and should be treated as such. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), United States of America

  • “Better female health education in schools so more girls know painful periods are not normal. We need better care for female pain! ”

    Person living with Cancer, Canada

  • “Unless you've gone through it it's hard to imagine. ”

    Person living with Cancer, Canada

  • “Access to care for all who struggle, regardless of race and socioeconomic status”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United States of America

  • “"Nothing about us without us."”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United States of America

  • “That he concede so a true president of the people can keep ACA”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United States of America

  • “1. Universal Healthcare 2. Radiology AI advancement 3. Medical Record Software analysis 4. Society support and education to the most vulnerable. COMMONWEALTH FUND: (https://www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019) The U.S. spends more on health care as a share of the economy -€” nearly twice as much as the average OECD country -€” yet has the lowest life expectancy and highest suicide rates among the 11 nations. The U.S. has the highest chronic disease burden and an obesity rate that is two times higher than the OECD average. Americans had fewer physician visits than peers in most countries, which may be related to a low supply of physicians in the U.S. Americans use some expensive technologies, such as MRIs, and specialized procedures, such as hip replacements, more often than our peers. The U.S. outperforms its peers in terms of preventive measures -€” it has the one of the highest rates of breast cancer screening among women ages 50 to 69 and the second-highest rate (after the U.K.) of flu vaccinations among people age 65 and older. Compared to peer nations, the U.S. has among the highest number of hospitalizations from preventable causes and the highest rate of avoidable deaths.”

    Person living with Endometriosis, United States of America

  • “Ethical Decision Description: An ethical decision is one that engenders trust, and thus indicates responsibility, fairness and caring to an individual. To be ethical, one has to demonstrate respect, and responsibility. The benefits of the stakeholder approach in ethical decision making creates positive relationship with the stakeholders. It results in streamlined process of decision making and addresses the expectations of the stakeholders.”

    Person living with Endometriosis, United States of America

  • “Provision of free healthcare services which are delivered and not just on paper”

    Person living with Mental health disorders, Zimbabwe

  • “It will favour PLWNCDs and laws will be put in place for their betterment. ”

    Person living with Mental health disorders, Zimbabwe

  • “Accountability and transparency of existing spending of funds as well as meaningful involvement and consultation with young people and people living with NCDs in formation of National NCD Strategy & Policies”

    Person living with Mental health disorders, South Africa

  • “Politicians need perspective, in the form of people's experiences, while they are reviewing and making up words on thousands of formal documents. Without the involvement of PLWNCDs, decision-making processes are empty, unsustainable vessels.”

    Person living with Mental health disorders, South Africa

  • “Affordable and equal access to care, medicine and technology regardless of gender, race or social standard”

    Care Partner, South Africa

  • “They have the experience”

    Care Partner, South Africa

  • “1- Better access to treatment and medicine. 2-Better health care coverage. 3-Less bureaucracy and access barriers to health care. 4- To grant a better and efficient health care.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Colombia

  • “Because it is very important that patients are taken into account when making decisions. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Colombia

  • “I would request more funding for the primary health care areas so that NCDs are prevented or diagnosed timely to avoid the devastating complications. I would request that there is even distribution and decentralisation of NCD care across the country so that all people can receive treatment within their home areas, as travelling to major cities is an economic burden to most families. ”

    Care Partner, Swaziland

  • “It is important for PLWNCDSs to be involved because they have personal experiences of the challenges they face. Decisions should involve those most affected. ”

    Care Partner, Swaziland

  • “ Covid 19 has to be addressed but at the same time we need to provide services for those living with NCDs. In fact, because of Covid we need to pay extra attention to those with NCDs. Otherwise we lose the lot altogether.”

    Care Partner, Sri Lanka

  • “It is fundamental that people who are affected by any public service be given the opportunity to engage and to participate in decisionmaking about their health....”

    Care Partner, Sri Lanka

  • “Reduce cost of life-saving meds and insulin used for NCDs treatment. Covid has impacted the livelihood and incomes of people and at this time, cost is the biggest factor for managing or preventing NCDs ”

    Person living with Diabetes, India

  • “Only People Living with NCDs have the necessary "lived experience" to justify what is actually essential for them. Since any decision is going to impact us directly, we, the PLWNCDs, must be part of the decision-making process to ensure that the right decisions are made. ”

    Person living with Diabetes, India

  • “I would like to highlight the gaps exposed by Covid 19 in our health system. We need a strong community based health care system which caters to the challenges and requirements of people livings with NCDs. The health care system has to move from acute care to chronic care. Health for all is a fundamental right and everyone should have access to same quality of health care irrespective of socio-economic status and gender. Air pollution is a mjor risk factor and more than 10 Indian cities are under top 20 most polluted cities in the world as per WHO data and every year the situation is getting worse rather than improving.”

    Person living with Chronic respiratory disease, India

  • “People living with NCDs have first hand experience of the health care system. PlWNCDs know and have experienced the gaps in our health care systems, which are otherewise not visible to the public or policy makers, so their experience is the expertise which will help in shaping policies in terms of planning, implementing and evaluating.”

    Person living with Chronic respiratory disease, India

  • “Provide sufficient resources for and access to education which will promote person-centred well-being. Enabling self-care and self-management empowers populations to take responsibility for lifestyle choices and facilities healthy behaviours. ”

    Person living with Chronic respiratory disease, United Kingdom of Great Britain and Northern Ireland

  • “People who live with NCDs are advocates for their peers and themselves. The patient voice needs to be included to inform policies. Ensuring that these policies are relevant and do not inflict unnecessary burdens will make them more relevant to those living with NCDs. #NothingAboutUsWithoutUs”

    Person living with Chronic respiratory disease, United Kingdom of Great Britain and Northern Ireland

  • “For mobile health tents in villages to improve access to healthcare in rural areas.”

    Care Partner, Uganda

  • “It makes them have self reliance and own their decisions.”

    Care Partner, Uganda

  • “The most important aspect to prevent an NCD is correct diagnosis. What's even more important is affordable diagnosis. Therefore, if there's early intervention, many NCDs could be managed early. Diagnostic tests of rare NCDs are themselves quite hefty and with the impact of Covid, most of the tests and treatments have costed people a lot, both financially and mentally. Therefore, not just acess to healthcare, but AFFORDABLE HEALTHCARE should be focused on. ”

    Person living with Neurological disorder, India

  • “The people who are living with NCDs best know the issues they face and how they manage those issues in their individual capacity. Having them in the decision making process will not just be an added perspective but the best solutions will come from them. Most logical yet feasible responses and decisions are made when they come from the horse's mouth. Moreover, NCDs bring with them social stigma and so it becomes a sensitive subject. Involving people living with NCDs in the decision making process will not just empower them but also can be a step in uprooting societal stigma. ”

    Person living with Neurological disorder, India

  • “Integration of Primary Health Care at all ward units for NCDs with other ailments and health care financing through Community Health Insurance at less than $5 per month”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Nil”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “They know the problems and available practical solutions. Policy-makers are more likely to listen to them.”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Accessibility to health service, proper supply of NCD drugs and availability of drugs at government hospitals”

    Person living with Cardiovascular disease (CVD), India

  • “Being a patient, I should know what tablets are prescribed to me and how that is affecting my health condition.”

    Person living with Cardiovascular disease (CVD), India

  • “*I would demand more inputs on the side of making people aware of NCDs, their symptoms, causes and treatements , and more.”

    Person living with Diabetes, Rwanda

  • “Actually that is because people living with NCDs are the the ones who are going to be affected mostly by the decisions made, whether good or not. Therefore, their presence should spot out some of decisions that can work better or that can be more meaningful compared to others.”

    Person living with Diabetes, Rwanda

  • “Mr. President, this is my plea as a person living with diabetes that you remove all duties or make duty free all medications, medical items, equipments etc for NCDs. The budget for health is 2nd highest in the budget, health facilities or infrastructure across the nation. Nigeria should be improved to meet world standards, universal health care should be functional for all. Policy should be made and a bill passed to protect quality health care practice and the human rights of persons living with NCDs. Agriculture should be financed and sport facilities incorporated into communities to encourage exercises.”

    Person living with Diabetes, Nigeria

  • “PLWNCDs should be involved in decision making because they are coming with experience of living with the condition. They would better understand without bias what would address their needs. Their participation would give hope and voice to PLWNCDs.”

    Person living with Diabetes, Nigeria

  • “I will ask him to make it mandatory for every citizen to have one complete health check at least once a year. He should increase taxes on alcohol and tobacco products and facilitate the education of good health practices including healthy diet. He should facilitate the testing of infants to check their sickle cell status in order to reduce the number of people born with the condition. Finally I will ask him to include education on NCDs in the school curriculum. All these efforts will help reduce NCDs in our country. ”

    Person living with Eye or ear conditions, Ghana

  • “They can make informed decisions due to their condition. ”

    Person living with Eye or ear conditions, Ghana

  • “Continuation of infrastructures by the previous government should be completed by the incumbent government. Neglect of these projects has exposed us in this Covid-19 season. ”

    Person living with Eye or ear conditions, Ghana

  • “We are humans and Ghanaians. Nobody has monopoly over knowledge, hence our expertise must be harnessed. ”

    Person living with Eye or ear conditions, Ghana

  • “Equity, access and quality healthcare. The disparity between the rich and poor is becoming a serious challenge which needs to be addressed.”

    Person living with visually impaired and old age, Ghana

  • “We are equally Ghanaians and must be treated with respect and dignity”

    Person living with visually impaired and old age, Ghana

  • “Improvement in communication”

    Person living with Cardiovascular disease (CVD), India

  • “It becomes need based.”

    Person living with Cardiovascular disease (CVD), India

  • “As they have the lived experience of being a service user and would have the knowledge of what works and what doesn't, what is needed to change policy and how to empower their local authorities and grass roots communities. Making sure the diverse need of all communities are met, including the seldom heard voices due to language barriers, and assess needs of disabled communities. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “Improve the quality of health personnel and the quality of equipment, quality of infrastructure education and access to health care ”

    Person living with Diabetes, Ghana

  • “PLWNCDs must be involved in decition making processes because they are the people who are bearing the brand and know the situation better. ”

    Person living with Diabetes, Ghana

  • “The importance being paid to road construction, material & child care should be the same with NCDs.”

    Care Partner, Ghana

  • “They must be involved because they are the most experienced to describe how they are affected by the various NCDs.”

    Care Partner, Ghana

  • “Push more resources into NCDs programmes, encourage partnership and collaboration, inclusion and active involvement of civil society organisations”

    Care Partner, Malawi

  • “It is important that we bring the face of PLWNCDs into the programmes from their first hand experience. PLWNCDs must be part of the decisions about thier own issues.”

    Care Partner, Malawi

  • “I think people living with NCDs must be involved in decision-making process because those decisions that are taken are for them and they are the ones affected. ”

    Person living with Diabetes, Rwanda

  • “Inclusive approach which puts patients at the centre of health interventions. Patients through patient organizations must be engaged and consulted at the local and national level in implementing interventions.Amplification of patient voice.Government must be transparent and widely disseminate information through Mass media and community radio's on availability of health commodities ”

    Person living with Hiv/Aids, Malawi

  • “They have living expert experiences on what is required for a patient.They posses expert knowledge which can assist to shape programming,monitoring and evaluation over and about passionate participation. ”

    Person living with Hiv/Aids, Malawi

  • “More investments in health literacy”

    Care Partner, Brazil

  • “Regular evaluation”

    Care Partner, Brazil

  • “Implement the WHO best buys and save the health of all. Also, ensure that people living with NCDs are prioritized as a vulnerable group in the community and their needs taken care of.”

    Care Partner, Cameroon

  • “They have the condition and understand their situation and experiences best. They should give insight and first hand information about what is best for them. Coupled with academic and other professional training, this can enable them to be better serviced. ”

    Care Partner, Cameroon

  • “Access to insulin pumps and CGM equipment for all T1D diabetic patients ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Ireland

  • “It's important to include the lived experience of NCDs as an adjunct to data.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Ireland

  • “Training of personnel at all levels of care. Increase budget for NCD advocacy, prevention and treatment. Construct more care giving facilities ”

    Care Partner, Cameroon

  • “The health care system must integrate NCD management, prevention and control at all levels”

    Care Partner, Uganda

  • “For ownership and sustainability”

    Care Partner, Uganda

  • “Financially well-resourced services, equality of access for all and improved training and education for staff to provide patients and service users with the most appropriate evidence based care for their condition/s. ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “People living with NCDs understand the weight of political decisions regarding their care pathways. They know the financial and psychological burden of living with long term health conditions and how daily decisions are required to navigate each day safely. ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “NCDs are a medical problem affecting the entire nation and the globalized and highly communicative world. Therefore, the short- and long-term national policies on NCDs should be guided and driven only by credible, reproducible and transparent science. ”

    Care Partner, India

  • “So that policies evolving from such consultations include the inputs of the practical (and not theoretical) experiences. ”

    Care Partner, India

  • “I wish I could give suggestion to the health minister that everyone wherever they live has the same need of facilities and access to health facilities. So that the government has the obligation to fullfill the needs such as hospitals, medical profesionals and medicines. In west Kalimantan Province in Indonesia, there are not these facilities so people with NCDs must go to Jakarta by airplane so that they will have hight risk during the flight and the airport and also they will pay more for the tickets and accomodation there, so that people with NCDs will feel tired and have low immunity. In addition the treatment takes a long time so people will pay for the treatment and also living costs. In fact, during covid-19 two people with NCDs from my Province who were treated in Jakarta have passed away because during chemotherapy they also got exposed to coronavirus. ”

    Person living with Cancer, Indonesia

  • “I think that people living with NCDs must be involved in decision making process because they are practitioners, so they will give their opinion and suggestion based on the experiences in their lives. ”

    Person living with Cancer, Indonesia

  • “SDOHs Care”

    Person living with Neurological disorder, Germany

  • “Sustainability”

    Person living with Neurological disorder, Germany

  • “Participatory programming and budgeting and SDOHs / human rights approach to care.”

    Person living with Neurological disorder, Germany

  • “Build capacity of health professionals and build a friendly environment between health workers and PLWNCDs”

    Person living with Visually impaired, Ghana

  • “Because our disability is not inability. Our skills and competence is much needed in the development agenda of our nation.”

    Person living with Visually impaired, Ghana

  • “There is the need to increase domestic investment revenue mobilization and other sources such as taxes on alcohol, tobacco, sugar-sweetened beverages etc. We must allocate more public financing for health. Young people need to be on board as stakeholders in the NCD/health response. There must be availability of comprehensive services for early detection, diagnosis, treatment, psychological, rehabilitative, palliative care for PLWNCDs and other chronic conditions.”

    Person living with Endometriosis, Ghana

  • “People living with Non-Communicable Diseases (NCDs) offer Unique, Invaluable Insights. Effectively addressing NCDs requires understanding how these diseases affect people and the challenges and needs that people face as they navigate healthcare systems and daily life. Learning from the lived experience and first-hand knowledge of NCDs is essential to improving policies, services, programmes. It drives Results, and organisations that carry out genuine meaningful involvement activities stand to benefit in many ways. Government transparency and accountability, more effective use of public funds for health or concrete improvements in health service delivery. All sectors can meaningfully involve people living with NCDs to improve NCD prevention and control initiatives. ”

    Person living with Endometriosis, Ghana

  • “Providing the best technology and medications that support people with NCDs. Since people do not choose to have them and have systems where even the poorest in our society can live with NCDs. ”

    Person living with Diabetes, Kenya

  • “They are the people who live with the disease. With time they even become better than the doctors. Getting them involved can help the lives of the people who are new to the diseases.”

    Person living with Diabetes, Kenya

  • “Tobacco control and better primary care for all”

    Care Partner, Chile

  • “Only taking in touch what means to "suuger" a NCD supoose to well understand patiens and peolpe living with NCD”

    Care Partner, Chile

  • “Proper funding of primary healthcare with health professionals in order to keep people healthy and safe in the community. Increase access to dieticians, in particular in the community, considering the huge dietary risk factors in NCD development & management.”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Ireland

  • “Because we are the experts on living with the condition(s); we have an insight that no government, scientific researcher, medic or health professional will know without having the condition themselves. This insight can ensure money is spent on the right services, in the right place at the right time rather than on what other people think we need. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Ireland

  • “Financial investment pumped into primary care & preventive activities for managing risk factors or development of them from unhealthy environments. Now with the borders closed, there is less unhealthy processed food available & more local fresh foods welcomed, and this should be maintained post covid.”

    Care Partner, Brunei Darussalam

  • “Participation in such processes allows a better match of outcomes desired. ”

    Care Partner, Brunei Darussalam

  • “ensuring people can exercise, prevent disease and access treatments and medications during lockdown and semi-lockdown”

    Person living with Cardiovascular disease (CVD), Switzerland

  • “To ensure a patient-centric approach”

    Person living with Cardiovascular disease (CVD), Switzerland

  • “Vigorous screening programs in communities for early detection of case and management. Establishment of NCD Units or departments in all facilities for vigorous status screening programs, counselling services and referrals to appropriate quarters for management. Need for mobile services for NCD patients. Financial support for those whose jobs have been lost due to the pandemic, especially the private school teachers Support for their care givers since some have to leave their work to take care of bed ridden patients or family members. Special allowance for healthcare givers who will go into the communities, home visiting to follow up on NCD cases. Provision of vans for the community screening programs and home visits. Empowering the LOCAL NGOs towards all the above mentioned. Making sure that the NGOs are strengthened in terms of funds, equipment vehicles and logistics towards these health promotion activities THE NHIS SHOULD COVER ALL MEDICINES INVESTIGATION AND PHYSIOTHERAPY OF ALL CLIENTS.”

    Care Partner, Ghana

  • “This will serve as encouragement for them that they are also observed As a promotion of mental health in the sense that stigmatization would be reduced. They will also have a meaningful life.”

    Care Partner, Ghana

  • “Effectively addressing NCDs requires an understanding how these diseases affect people and the challenges and needs that people face as they navigate healthcare systems and daily life. Learning from the lived experience and first-hand knowledge of NCDs is essential to improving policies, services, programs and social beliefs. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), India

  • “Education of medical people”

    Person living with Cancer, United Kingdom of Great Britain and Northern Ireland

  • “I think everyone should take an active interest in their own health. By taking an interest, the person is likely to do some research into their condition. So to be involved in the decision making process regarding treatment is a natural progression to this belief. ”

    Person living with Cancer, United Kingdom of Great Britain and Northern Ireland

  • “Access to evidence based treatments (including treatments that are not medications) and further research into rare NCDs”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), United Kingdom of Great Britain and Northern Ireland

  • “Because we are in the Patients as Partners era of medicine and have important lessons to bring from our lived experience, particularly regarding rare NCDs.”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), United Kingdom of Great Britain and Northern Ireland

  • “1. Universal Health Coverage because everyone of all ages, different socio-economic class and all genders have the rights to access quality health care. 2. Primary Health Care with a Public Health Approach because these eases the accessibility to and guarrantees care at different places across the nation. 3. Health care insurance and financing, because the majority of Nigerians are poor and just a sickness away from poverty. This will relieve out of pocket spendings on health and emergency health care and funds can be available for other things thereby reducing poverty in the land and among the population. ”

    Care Partner, Nigeria

  • “It can never be about PLWNCDs without them. ”

    Care Partner, Nigeria

  • “Create more awareness, making a law mandating every citizen to go for regular checkups and regular physical exercise ”

    Person living with Stroke, Nigeria

  • “Because they wear the shoes and know where it pinches”

    Person living with Stroke, Nigeria

  • “providing affordable medicines to all”

    Person living with Diabetes, India

  • “Because they can make much more informed decisions to deal with their condition”

    Person living with Diabetes, India

  • “With regards to the gallant rises in NCDs in Ghana, I think there is the need for the government to pay a rapt attention to NCDs prevention in the country and by so doing, I think the government should allocate enough of part of its national budget on health to the prevention of NCD. I think the government should also make equal access or opportunities to persons living with NCDS. That is to say, including persons with NCDS in high or top governmental positions to serve as encouragement to persons living with NCDs to participate in national events and to also help reduce stigmatisation or perceptions people accord to NCDs. Moreover, the government should also introduce some kind of scholarship scheme to persons living with NCDs in other to give support to them financially to enable them access to education to help them get employable jobs and reduce the dependency ratio of these persons on care givers. ”

    Person living with Diabetes, Ghana

  • “This is because they understand their condition better and will be in a good position to share their lived experiences better during the process of making decisions. Also, including persons with NCDs in the decision making process will ensure the concept of equity between persons living with NCDs and the population. Thus, equal opportunity for all and hence reduced discrimination. This will also make people living with NCDs valuable in society. This will make them feel they are as important as the others within society. Lastly, persons living with NCDs are also humans and are therefore entitled to fundamental human rights that are by including them in the decision making process.”

    Person living with Diabetes, Ghana

  • “Give them jobs”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Covid-19 shows our healthcare systems cannot withstand a public health emergency in parallel to the huge weight placed on healthcare services by NCDs like neurological disorders. Now is the time to reimagine healthcare and to build back better - creating a resilient and future-proofed infrastructure which places the care of our patients at its core. We need a Global Brain Health Strategy, with a focus on neurology, to ensure that every person living with a neurological disorder has access to the diagnosis, treatment & supports they need. ”

    Person living with Neurological disorder, Ireland

  • “WHO says existing high-level commitments have not afforded neurological conditions the political priority on national agendas that they require, but we need action not acknowledgement! In 2018, mental & neurological disorders were added to the list of priority NCDs. But only 24% of countries worldwide have stand-alone neurological health policies. This must change!”

    Person living with Neurological disorder, Ireland

  • “That it should include not just prevention and cure, but palliative, supportive care as well as survivorship and rehabilitation ”

    Person living with Cardiovascular disease (CVD), Kenya

  • “Because it is about them, their bodies, there health, their right. ”

    Person living with Cardiovascular disease (CVD), Kenya

  • “Equitable health and healthcare facilities for all ”

    Person living with Obesity, India

  • “I would demand promotion of telemedicine and acceptance of valid medical licenses from other states (my state has a shortage of doctors, especially in rural areas); expansion of Medicaid statewide; specialty phone clinics where someone with an NCD could call to get info/education, arrange appointments, and gain advocacy.”

    Person living with Cardiovascular disease (CVD), United States of America

  • “They should make hospital service more efficient in term of cancer treatment”

    Person living with Cancer, Malaysia

  • “improve hospital facilities and provide well trained heathcare practitioners”

    Person living with Chronic respiratory disease, Malaysia

  • “Decrease waiting time in government hospitals and enhance the effectiveness ”

    Care Partner, Malaysia

  • “Decrease the financial gap between public hospital and private hospital”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “To voice out our experience”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “NCD structure in the Makueni county. Budgeting allocation for an NCD agenda. Free treatment, screening of NCDs patients. Total inclusion in government affairs of people living with NCDs. Employment of NCD Advocacy Officer. Activate policy related to NCDs matters. Availability of health communication and advocacy strategy. ”

    Care Partner, Kenya

  • “Because they have EXPERIENCE with the diseases, they understand the gaps in health system .They are champions in the NCDs field.”

    Care Partner, Kenya

  • “Focus more on primary healthcare instead of treatment based healthcare. ”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “So that they can voice out what the real problems are that they are facing through their experience. Also, the policies affect them the most.”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “Accessibility to early diagnosis, stronger emphasis on health promotion and public education ”

    Person living with Cancer, Malaysia

  • “Decisions made will be based on their real life experiences”

    Person living with Cancer, Malaysia

  • “We all agree and evidence has proven based on multiple pieces of research during the COVID 19 pandemic that the risk of contracting the infection is higher for PLWNCDs. With this crisis, we must utilize this window of opportunity to not work in siloes but collaborate on building up a stronger financed public health system where we are must prepare to fight the health disparities and make a reasonably just society for all. Access to care for PLWNCD is quintessential and must be integrated into the health systems to combat the double burden of diseases over the years. The adversities due to the pandemic really have jolted health systems and really involve the collaboration of civil societies and public health to work together to build back better. ”

    Person living with Diabetes, India

  • “Strongly agree with this statement and I believe keeping a patient-centered approach in healthcare is the need of the hour. We must complete the circle of decision making by keeping people with lived experience as a position of a key stakeholder. ”

    Person living with Diabetes, India

  • “Stop corruption snd focus on the health of the nation, especially during these trying times. Together we can make a difference”

    Care Partner, Kenya

  • “They actually understand and have first hand experience of how it feels to live with NCDs. The struggle and the experience has empowered them to be the best advocates for health-concerning matters and fight for the whole nation.”

    Care Partner, Kenya

  • “More access to treatment as cancer patients are at a higher risk”

    Person living with Cancer, Trinidad and Tobago

  • “Because we have the experience ”

    Person living with Cancer, Trinidad and Tobago

  • “They firstly need to do research or work with others ”

    Person living with Eye or ear conditions, Trinidad and Tobago

  • “They would have a better understanding. ”

    Person living with Eye or ear conditions, Trinidad and Tobago

  • “Reduce corruption in the health ministry. Pay nurses better and train them regularly to improve their knowledge and skills. Allow importation of immunosuppressant drugs without paying taxes.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “Because they have first hand experience that would be useful when making decisions related to their health and lives.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “Que no desvíen los recursos recaudados por los impuestos especiales a la comida basura, tabaco y alcohol para pagar burocracia. Que los dediquen íntegramente a la prevención y atención de las ENT”

    Care Partner, Mexico

  • “Por la experiencia que se ha acumulado como sujeto de este tipo de padecimiento. SI desde edades tempranas se hubiera puesto interés en que los niños aprendieran sobre este tipo de problemas, atenuaría la carga para las autoridades sanitarias.”

    Care Partner, Mexico

  • “Clear communication about COVID and the consequences. Transparency regarding the making of the vaccine and its cost. Also about the negative reactions to the vaccine. More global cooperation and respect. Not only hear about the costs they made but also what the income is of the government regarding taxes, inheritance etc.”

    Person living with Neurological disorder, Belgium

  • “Because they are the centre of it all! ”

    Person living with Neurological disorder, Belgium

  • “Strengthening of the healthcare systems through the fulfillment of commitments made to increase funding to NCDs”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Zimbabwe

  • “They are better informed of the problems due to lived experiences, making them better placed to be part of the solution.”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Zimbabwe

  • “We understand what we need and how to work with other people who are living with NCDs.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Vietnam

  • “You are fundamentally overlooking the importance of behavioural changes that have come about from the pandemic. Alcohol purchasing in the UK has vastly increased and is around Christmas levels of purchasing. This has an immediate negative effect on health (acute effects of intoxication) but also over the longer term (chronic health harms). The mental health aspects of the pandemic have not been enough of a focus. Increases in alcohol consumption may be a response to poor mental wellbeing, anxiety and stress. It will make it worse. You need to tackle risk behaviours now. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “Empower and support local grassroot organisations working on specific NCDs and PLWNCDs to have a seat at the table”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), India

  • “Two words : lived experience”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), India

  • “Since I am a transplant recipient who depends on specialty medication, I would ask for better local supply chains of these medicines to ensure affordability and availability. Currently, I import my medicines from India and they are cheaper than local alternatives of the same medication. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “Because we experience these healthcare systems that decision-makers and policy-makers create. Therefore we are able to give insight and feedback that will create a better healthcare system. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “I would demand that the cost of medication be cheaper. The Belize diabetes association is a nongovernmental group. We are not funded in any way. We work on getting things done using public support. There is little attention given to NCD conditions. Belize doesn't have any of the newer technologies used to treat diabetes. Using syringes and flexpens still come at a high cost.”

    Person living with Diabetes, Belize

  • “People who live with NCDs are better at understanding what it is like with the condition. They can provide better insight to having an NCD and being a part of a bigger voice.”

    Person living with Diabetes, Belize

  • “Quick and fast access to NCD screening regardless of the payment scheme. How fast a patient should receive care should be based on their condition/risk factors/symptoms and not due to what payment scheme they fall into, whereby if you are a private patient with private insurance you can get faster access to care. And where if you are a "subsidised patient by the state", you have to wait for a longer period, and this is not right.”

    Person living with Cancer, Singapore

  • “Because we live the experience as NCD patients and feel the impact of decisions that were made. While many policy makers and healthcare professionals make decision on healthcare for the benefit of NCD patients, with the best intentions, they will have blindspots. That is because some of the decisions they make will be based on their own lenses. We are talking beyond the efficiency of a system to how some processes can be more effective and compassionate. This is why people living with NCDs must be involved in decision making processes.”

    Person living with Cancer, Singapore

  • “First and foremost we need to take care of ourselves, and if we get affected, the goverment needs to support us with quality treatment and save the lives of people. The main thing is life and next how low income groups can get good food with affordable prices in medicines and food. We will be suggesting for good health care to be equal to all and with free medicines or affordable to all. And treatment to covid19 and safety precautions to be taken equally to all sections of people and it should be free and affordable to all.”

    Care Partner, India

  • “They play a vital role to get involved in decision making and they can give the right guidance of how care can be reached by a normal person of a low income group, what they will face in problems related to NCDs, they can put this in decision making”

    Care Partner, India

  • “As COVID 19 cases in India continue to climb, it's important to make efforts to protect PLWNCDs and keep prioritising their needs by providing holistic health system support through digital intervention and awareness programs to promote fitness and health and mental well being of patients. Also focus to be given to senior citizens living with NCDs by providing them adequate support for their treatment. ”

    Person living with Diabetes, India

  • “To bridge the gap and change the mindset of people, it's important to have an army of PLWNCDs that can help people through their own experiences within the reach of health system. They can further provide support to engage and develop the full range of services needed on the ground level to improve the lives of people and bridge the gaps. ”

    Person living with Diabetes, India

  • “Yes”

    Person living with Hypertension , South Africa

  • “I would talk about the emerging need to set goals for better diabetes control that would include patient education in a broad and accessible way. I would say that investment in patient education and the incorporation of new technologies can reverse the growth of the diabetes pandemic in our country. Unlike Coronavirus, death due to complications from diabetes is slow and progressive, consuming financial resources that could be much better used in other programs for the population.”

    Person living with Diabetes, Brazil

  • “Because we cannot continue to watch our health initiatives without taking an active role in this process. Health is a value that does not exist without patients. Neither the industry, nor the government nor the medical society can make health happen without us, patients, being in agreement with the treatment, the protocol or the package leaflet. All health recommendations take into account the patient's active participation. We no longer want to be the end of our own health production line. We want to participate in all stages. We don't want to be doctors but we want to be partners, co-authors of advances because, after all, we will be the main stakeholders, the beneficiaries or the "guinea pigs" of all these advances. "Nothing about us, without us."”

    Person living with Diabetes, Brazil

  • “To improve their understanding of NCD prevention, treatment and care. To understand the difference(s) their strategies have in dealing with NCDs and also that they understand that some people may have one NCD and that others may have multiple NCDs. That their one size fits all strategies don't work eg. recently in the UK treating all T2D the same.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “They have a better understanding of what is happening to them and also what they have to deal with every day.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “Engaging civil society and communities to ensure that the NCD and emergency responses address the real needs of people.”

    Person living with Cardiovascular disease (CVD), Italy

  • “Equal treatments for all people across all of society ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “To ensure people living with NCDs have solutions to address and support individuals in decisions to improve their health. ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “I would encourage more education and awareness campaigns on NCDs, subsidising and ensuring access to essential medicines like insulin and metformin. I would also call for the adequate compensation of health care personnel to avoid disruption of services due to industrial action. ”

    Person living with Diabetes, Zimbabwe

  • “People living with NCDs must be involved in decision making because they are among the most important stakeholders in issues involving their care and treatment. Since they are the ones living with the conditions, they are better placed to make decisions that affect their care as they have intimate knowledge and experiences of what it takes to live with the conditions. People with non communicable diseases need to be empowered to have a voice in issues that concern their welfare.”

    Person living with Diabetes, Zimbabwe

  • “Be more honest and ensure that you are prepared for any future pandemic and ensure that NCD services can still operate.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “We are our own experts, we don't want new processes/systems or medication without our input at the beginning, middle and the end.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “Firstly, it is important for the government to invest in the public health system since that is where most people receive their primary care. It is also important for government to ensure that there is a constant flow of medical supplies through out the country, in this instance, insulin and chronic drugs. This will curb private pharmaceuticals and pharmacies from charging prices that cannot be afforded by most people, especially seeing that this country has a big informal sector, which in turn means that people live on a hand to mouth basis. It is not fair for people to be made to choose between feeding their families and buying their chronic medication. Lastly, I would like to see chronic health medication and testing being done in every primary health care facility, especially those in the grassroots. It makes no sense for a person to have to travel long distances to get the care that they need.”

    Person living with Diabetes, Zimbabwe

  • “People with NCDs must be involved in decision making processes because they are the ones who are directly faced with the challenges of managing their conditions. They know exactly what they want and must therefore be given the opportunity to present their cases, which are in most cases suitable for people who will be living with NCDs. ”

    Person living with Diabetes, Zimbabwe

  • “Diabetes is a rapidly growing disease and governments should address this problem far more than they do. Make laws that ensure less sugar in products and ban mega size products. ”

    Person living with Diabetes, Denmark

  • “More focus on general public health as prevention and resilience when it comes to pandemics and NCDs”

    Person living with Cancer, Denmark

  • “Because measures taken must work in practice not only in theory.”

    Person living with Cancer, Denmark

  • “Less is more. Give the correct information. Some diabetics are not in as high danger as they think. Many factor influences. Proper natural foods boost immune systems. Many of the supermarket foods are refined and do not contain vitamins (crops and fruit given pesticides etc.) ”

    Person living with Diabetes, Denmark

  • “To manifest what is really needed.”

    Person living with Diabetes, Denmark

  • “I currently live in the United States where I can see the social and cultural barrier to health access. People from Latin American countries have no access to basic diabetes management tools and this has become evident in the pandemic. Health is a human right. How are we addressing this problem?”

    Person living with Diabetes, United States of America

  • “Not talking about those impacted without them being in the room to guarantee needs are met. ”

    Person living with Diabetes, United States of America

  • “Because we know how it is to live with it and we are more likely to understand others living with the same disease. ”

    Person living with Obesity, Denmark

  • “Prevention is cheaper than cure.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Chile

  • “Please act on the scientific evidence and knowledge of medical experts of the need to be brave and address the media's incorrect reporting of conditions. It is causing society to stigmatise and judge without any lived experience or facts. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “People who have no lived experience can only speculate on what is needed to help a person. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “I wrote a book about NCD prevention. I wrote for many purposes: Access of the population to a diabetes education program to help adherence to therapy; Conducting diabetes courses for health professionals in order to help people with diabetes adhere to therapy; creation of a government ordinance, which can show where the remedies are to treat chronically ill people and to quickly help those municipalities, which are experiencing problems with the delivery of medicines and supplies; Creation of an education program on chronic diseases in schools, involving teachers, principals and parents of students; and others.”

    Person living with Diabetes, Brazil

  • “Because we have already had evidence that when we manage to engage people, the Government recognizes the cause and our legitimacy. Thus, we promote improvement in access to appropriate treatment.”

    Person living with Diabetes, Brazil

  • “Acknowledgment of obesity as a disease and respect for people with all levels of obesity.”

    Person living with Obesity, United States of America

  • “Nothing about us without us!”

    Person living with Obesity, United States of America

  • “First of all we need stable government, then the prevention of NCDs through proven and cost-effective strategies that address social, commercial and environmental drivers of NCDs and their risk factors like tobacco control, alcohol, unhealthy diets, physical inactivity and air pollution. Ensuring strong primary health care that offers integrated services.”

    Care Partner, Libya

  • “Their involvement helps to control ncd risk factors. ”

    Care Partner, Libya

  • “Ensure that all patients with the condition are treated regardless of their ability to pay. NCDs do not discriminate. Covid or no Covid - patients need to be treated - even if they have lost their jobs, have no insurance and are unable to pay.”

    Person living with Cancer, Singapore

  • “Without the patient perspective how can any solution be patient-centric?”

    Person living with Cancer, Singapore

  • “Sugar tax, more restrictions on alcohol marketing, less tobacco industry interference in health policy, food reformulation, reduce density of outlets. Why? Because they are proven and cost effective. Problem is, there are so many proven interventions but little political will to spend on prevention.”

    Care Partner, New Zealand

  • “I would focus on NCD care during this pandemic. Many families have to take care of their very ill and often immobile patients at home with limited support and resources. ”

    Person living with Eye or ear conditions, Singapore

  • “We are ultimately the recipients of public health care services and programmes and therefore should be at the centre of every system set up for our purpose. ”

    Person living with Eye or ear conditions, Singapore

  • “1. Increased focus on prevention strategies to decrease the burden of preventable NCDs. 2. Improved access to accessible comprehensive NCD screening and management programs up to the poorest and most vulnerable in our country. 3. Increased public awareness and community education drives NCDs prevention, management and protection.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Uganda

  • “1. People living with NCDs bring unique perspectives to the decision making process that have huge benefits which healthcare providers and policy makers might not be aware of. 2. The stories of PLWNCDs are powerful tools for advocacy and change, that can drive for results more effectively in addition to data and research. 3. PLWNCDs, once involved in the process would then demand accountability more persistently ensuring better results from programs. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Uganda

  • “Free, affordable, accessible health care for all. ”

    Person living with Diabetes, Nigeria

  • “The person that wears the shoe knows where the shoe pinches. It is good to hear from the horse's mouth. We feel the pain and we know what's going to be the best for us. ”

    Person living with Diabetes, Nigeria

  • “I will demand the improvement of enough and specialized physicians and up to date medical care and facilities in every part of my country, Ethiopia. At the same time, working on diabetes awareness and prevention based on community level of understanding in a given time interval. The reason I have demanded the above items is that as a country we have been facing those issues for the past 2 decades and still we are facing them at this time. ”

    Person living with Diabetes, Ethiopia

  • “The reason people living with NCDs should be involved in decision-making is they understand the burden of people living with NCDs and their care partners. Plus they could be a good source of information country wide with NCD related news and realities. ”

    Person living with Diabetes, Ethiopia

  • “Programmes to increase people's awareness of risk factors and healthy behaviors to avoid NCDs rates that are further increasing.”

    Person living with Cardiovascular disease (CVD), Germany

  • “They are the experts in their disease and know what is important for them.”

    Person living with Cardiovascular disease (CVD), Germany

  • “Education to start in primary grades. Inclusion I'm all aspects of life. To have Habilitaion rather than rehabilitation ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Canada

  • “If everyone sits back and just observes then no change will happen. We need to stand up and be heard. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Canada

  • “I will ensure that facilities (buildings, equipment, research materials, etc) are available and that service providers' excellent capacity, commitment and actions are in place that will enhance efficient and effective health care service delivery at all levels.”

    Person living with Eye or ear conditions, Nigeria

  • “I will demand to prioritize health in the first place; it is not there at the moment. Its not only covid but its all about after effects too. There should be a chunk in the health budget seperately and nationwide for opportunities in training, awareness and education.”

    Person living with Cancer, Pakistan

  • “Because it affects them most”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Philippines

  • “To not be left behind, now or post COVID, as people with dementia have been, and contine to be, especially in terms of the SDG goals!”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Australia

  • “I will raise my voice for palliative support e.g. food stuff like rice..etc for PLWNCDs who have been suffering since the beginning of this COVID-19. Why is that, there is the right to food and other basic amenities for the most vulnerable people during COVID-19.”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Yes, as the slogan goes -€œwithout us, nothing for us". We need a serious and dedicated advocate to increase community awareness about NCDs and for better public policies and health systems in order to address PLWNCDs.”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Commissioning for POTS and dysautonomia”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “I would turn my back on the Orange Clown or Azar and walk silently away.”

    Person living with Cardiovascular disease (CVD), United States of America

  • “Stop taking funding from pharma companies”

    Person living with Cardiovascular disease (CVD), United States of America

  • “Nothing for us without us. But who is 'us'? https://www.linkedin.com/pulse/voice-representation-community-participation-global-response-uhrig/”

    Person living with Cardiovascular disease (CVD), United States of America

  • “Recognition that NCDs are a public healthcare problem and a government priority. Implementation of activities to protect against exposure to NCDs in smoking cessation policies, controlling alcohol consumption, fighting against pollution and promoting physical exercise. From a curative point of view, medical know-how in all fields should be increased, laboratories should be equipped, there should be better access to essential NCD treatment (radiotherapy, chemotherapy, specialised surgery, medication for all NCDs and dialysis) and health insurance should be promoted so that all citizens are covered. ”

    Person living with Cancer, Burundi

  • “They are best placed since they know about the problems faced since the start, during and after the disease. In this case, they make proposals on what should be done to deal with the problems. They can therefore make constructive suggestions.”

    Person living with Cancer, Burundi

  • “I will be making the opening speech at the society for bariatric surgery in three days' time together with the French health minister, and I will have an opportunity to talk to him directly.”

    Person living with Obesity, France

  • “They are the only people who know exactly how their illness affects them. Deciding on behalf of other people has never had positive results; rather, the opposite has been the case.”

    Person living with Obesity, France

  • “Health for all is a priority and the primary right which each citizen should enjoy. It should have provisions to extend timely help from the time a person is conceived in the womb of the mother till death. Education, employability, technology, economic growth, defence, etc come much later and have meaning only if health is considered a "national asset". Each government in their mandate should equip civil societies and extend support to them for execution of strategies to strengthen health sector. The census should not be just number of people, instead it should be number of healthy individuals and number of people who require medical intervention. As that's the only way the government can create a blue print (with the help of civil societies) to extend help with good intention with the aim to achieve a holistically healthy and progressive nation. ”

    Care Partner, India

  • “We have to look at the inclusive and sustainable societies. the scope of involvement is varied as per the condition, family background, extent of support,age , sex etc. ”

    Care Partner, India

  • “The Pandemic has added lot of meaning and value to already enriched "Our views Our voices" initiative. The primary goal of the initiative speaks Sharing our views our stories to be heard and to be kept under the universal health coverage. Each one has unique story to share and be heard. The platform should be provided and people should knock all doors as per their competencies and represent the PLWNCDs at the global platform.”

    Care Partner, India

  • “People living with NCDs and their care givers can share real time personal stories of challenge without any copyright issue; instead with ultimate passion, vividly and from the heart. This is so because their voices originate from the heart and come out through their mouth via the brain. Heard stories, unfortunately, lack emotions, tears, passion, feeling of dejection, struggle , helplessness and though the words do come out from the mouth they do not originate in the heart. So they lack the pulse and hence the connect.”

    Care Partner, India

  • “Increase the budget for healthcare. Improve campaigns for prevention and early diagnosis.”

    Person living with Cancer, Argentina

  • “We need to be empowered.”

    Person living with Cancer, Argentina

  • “More investment and less bureaucracy for early access to prevention and treatment.”

    Care Partner, Argentina

  • “Because the person who is experiencing and knows the reality of the problem is the best placed to understand and put forward solutions.”

    Care Partner, Argentina

  • “More attention to treatment and care for NCDs, particularly cancer. More investment in research to strengthen public healthcare in the field of treating diseases with a low prevalence. Create a specialised unit for the treatment of rare cancers..”

    Person living with Cancer, Mexico

  • “Because they are living with and experiencing the disease, so they are more aware of the issue than somebody who has not lived with it, and they understand the shortcomings of the support based on the management of NCDs through personal experience. ”

    Person living with Cancer, Mexico

  • “Include FreeStyle sensors in the solidarity fund. They change the lives of people with type 1 diabetes and very few people can buy them because they cost 66 dollars each and last for 14 days. This technology has radically changed the health and independence of my little girl. I hope to be able to continue buying it, but I think about the people who are unable to and I think it is unfair. ”

    Person living with Diabetes, Uruguay

  • “No lo tengo claro cómo para opinar ”

    Person living with Diabetes, Uruguay

  • “So that their rights are observed and they are listened to.”

    Person living with Diabetes, Uruguay

  • “Financial resources and access to care for people on low incomes.”

    Care Partner, Uruguay

  • “They are the ones with first-hand information on needs and expectations.”

    Care Partner, Uruguay

  • “Help to obtain the right medication for treatment.”

    Person living with Diabetes, Uruguay

  • “Because we are the same as people who are not living with NCDs and we have the same rights as well as the same obligations.”

    Person living with Diabetes, Uruguay

  • “Detection and monitoring from an early age for any disease, with a multidisciplinary healthcare team approach.”

    Person living with Diabetes, Uruguay

  • “To give guidance to governments on the real needs of people living with NCDs and not allow them to impose on us what is financially more convenient for them, but rather give us what we really need. For example: qualified healthcare teams, medication and updated technology, which have a higher cost but benefit people living with NCDs.”

    Person living with Diabetes, Uruguay

  • “Greater access to new technologies and treatments to improve our quality of life. ”

    Person living with Diabetes, Uruguay

  • “Because we are often ignored or not taken into account when it comes to what our condition requires to improve our quality of life. It is important to listen to us.”

    Person living with Diabetes, Uruguay

  • “The right diet for people with type 1 diabetes can be expensive. This includes meat, fish, fruit and vegetables, as well as sweeteners, a number of which should not be consumed by some children. Also, I think that at least children and adolescents should be given at least one free sensor a month, so as to have 14 days without having to prick their fingers five or more times a day. It's not easy.”

    Care Partner, Uruguay

  • “Affordable prices for the best medication for children with chronic diseases. Better care. Quality of life.”

    Person living with Diabetes, Uruguay

  • “Diabetics need a minimum of medication and consumables to live and this problem is increasingly difficult to solve, bearing in mind that we also need an appropriate and healthy diet, which costs a lot of money. ”

    Person living with Diabetes, Uruguay

  • “Empatía ”

    Person living with Diabetes, Uruguay

  • “Empatía ”

    Person living with Diabetes, Uruguay

  • “Because we know best what is essential to live with dignity and have a good quality of life.”

    Person living with Diabetes, Uruguay

  • “People with NCDs have the right to the best treatment to ensure good quality of life. That is why treatment should be free of charge for them. ”

    Care Partner, Uruguay

  • “Knowledge through education and prevention will lead to savings in the long term. Education and laws that are complied with.”

    Person living with Diabetes, Uruguay

  • “So that I am also included.”

    Person living with Diabetes, Uruguay

  • “Request better treatment.”

    Person living with Diabetes, Uruguay

  • “They live with it and so they know what they need.”

    Person living with Diabetes, Uruguay

  • “Nobody knows better about their needs than the people living with NCDs.”

    Care Partner, Uruguay

  • “Free access to FreeStyle for better blood glucose testing for people with diabetes and cheaper medication for other diseases to improve people's quality of life.”

    Person living with Diabetes, Uruguay

  • “Because they have first-hand experience of what they need.”

    Person living with Diabetes, Uruguay

  • “Regarding diabetes: access to the necessary medical technology to monitor blood glucose and insulin pumps, together with education about diabetes. When people with diabetes are able to control their disease, there are fewer possibilities of infection and they are more likely to recover from other diseases. In general: assign more resources for healthcare, education campaigns and the promotion of healthy habits to minimise and start to halt premature deaths caused by NCDs. Governments should ensure access to healthcare and give priority to people with NCDs in the face of any new emergency healthcare situations, identifying and quantifying them, and knowing about their health circumstances.”

    Care Partner, Uruguay

  • “Because they live with them and are the most interested in what is best and truly necessary, and have no commercial or political interests. Because they know fully about the reality they face.”

    Care Partner, Uruguay

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La consultation Notre vision, notre voix réalisée en 2020 auprès de personnes vivant avec des MNT a été possible grâce au partenariat entre l’Alliance sur les MNT et Access Accelerated.

La COVID-19 et Reconstruire en mieux

En 2020, la consultation Notre vision, notre voix entendait recueillir les perspectives des personnes vivant avec des MNT quant aux difficultés qu’elles rencontraient au cours de la crise de la COVID-19.

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Élaboration de l’Agenda du plaidoyer

En 2017, la consultation Notre vision, notre voix avait pour objectif de comprendre les besoins, difficultés et priorités que des personnes vivant avec un large éventail de MNT ont en commun.

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