Tag Archives: ADI

HLPF Statement to WHO: WHO Civil Society Working Group on NCDs

The 36 members of the WHO Civil Society Working Group on NCDs (Non Communicable Diseases) commend the World Health Organization and Dr Tedros for his leadership as the world grapples with the coronavirus (COVID-19) pandemic. An empowered, well-resourced WHO is essential to lead governments, other stakeholders, and people through these trying times.

HLPF Statement to Member States
WHO Civil Society Working Group on NCDs

Published 12 July 2020
Author: WHO Civil Society Working Group on NCD’s
Download document or read the full statement here:

The COVID-19 pandemic has exposed health system gaps and vulnerabilities across the world and has demonstrated more than ever the need for resilient health systems, especially ones that are equipped to respond to the growing burden of non-communicable diseases (NCDs) and mental disorders.

As budgets are reallocated and ministry of health staff are reassigned to respond to the crisis, attention to NCDs and other chronic conditions (including prevention, treatment, rehabilitation and palliative care) has largely fallen off the radar – in particular for hypertension and cardiovascular emergencies, cancer, diabetes, respiratory diseases, obesity, mental disorders and neurological health conditions including dementia.

Due to the COVID-19 outbreak, people of all ages, who are living with NCDs, are more vulnerable to becoming severely ill and/or dying from COVID-19 or from a lack of health care service delivery for their untreated NCDs. It is therefore crucial that we “build back better” health systems and minimize disruptions to lifesaving prevention, diagnosis and care for those living with NCDs.

We call on Member States to:

  • Ensure NCDs prevention, diagnosis, treatment and palliative care are included in national emergency response and preparedness plans, beginning with inclusion of NCDs in national COVID-19 response plans in the context of universal health coverage and sustainable development.
  • Acknowledge the interconnections between global health security, COVID-19 complications and chronic conditions like NCDs and address these by developing, and scaling-up the implementation of robust national NCD action plans to protect and strengthen population health. These should prioritize the WHO ‘Best Buys and other recommended interventions’ and other relevant conventions and plans such as the Framework Convention on Tobacco Control, WHO Global Action Plan on Physical Activity, the WHO Global Strategy to Reduce the Harmful Use of Alcohol, the WHO Global Action Plan on the public health response to dementia, the WHO Mental Health Action Plan and forthcoming recommendations to address mental health conditions and air pollution.
  • Strengthen national resilience to build back better by ensuring support for dedicated health promotion and prevention institutions, ensuring that COVID-19 policy responses do not inadvertently increase exposure to key NCD risk factors and the burden of NCDs in the long-term,  and strengthening workforce competency in health promotion and NCD prevention and control.
  • Allocate sufficient and sustainable financing to enable health promotion and NCD prevention and control programmes and policies to be fully implemented to scale.
  • Raise tobacco taxes and implement taxes on other unhealthy commodities like alcohol and ultra-processed foods and sugar-sweetened beverages to simultaneously improve the health of the populace, reduce health inequities, and lessen the burden on health systems. These taxes can also raise much-needed revenue to help finance health, socio-economic, development and/or pandemic response efforts.
  • Continue and sustain the delivery of routine chronic care, supplies of essential medicines, vaccines and technologies, screening and diagnosis, access to resources, and supportive and palliative services for ongoing management of NCDs, mental health, and other chronic conditions.
  • Develop guidelines at national and global levels specifically for People Living with NCDs to successfully manage their conditions during the COVID-19 pandemic. Adopt innovative approaches, including digital health solutions, to enhance efficiency within health systems.
  • Ensure healthcare workers are recruited, trained, protected, and well-resourced to meet the current and future demand for chronic care and the COVID-19 pandemic and that healthcare research is properly funded, to support the development of innovative, evidence-based approaches to NCDs prevention and treatment in the setting of COVID-19 pandemic. Special attention is also needed to ensure the mental health and well-being of healthcare workers is supported and action is taken to prevent and control violence against health workers.
  • Systematically and meaningfully engage civil society groups and vulnerable groups (including people living with NCDs and other comorbidities, older people, and young people) in the development, implementation, monitoring and evaluation of international, national, and local COVID-19 responses.
  • Adopt a whole-of-government approach to COVID-19 to ensure the adoption of robust, evidence-based policies and plans, which do not expose governments to real or perceived conflicts of interest (such as through corporate social responsibility activities by unhealthy commodity industries) and which ensure access to safe, affordable and equitable access to essential health products (such as PPE, essential medicines including controlled medicines for palliative care) as part of a global response.

The WHO Civil Society Working Group on NCDs and the NCD community remains committed to elevating the voices of civil society and people living with NCDs and supporting WHO and governments during this pandemic and in the post-pandemic recovery period.

Members of the WHO Civil Society Working Group on NCDs

  1. Dr Monika Arora, Healthy India Alliance, India
  2. Ms Kwanele Asante, Our Views, Our Voices global advisory committee, South Africa
  3. Prof Naby Baldé, International Diabetes Federation, Guinea
  4. Mr Stephane Besançon, Santé Diabète, France
  5. Mr Enzo Bondioni, World Dental Federation, Switzerland
  6. Ms Chantelle Booysen, Youth Leaders for the Lancet Commission on Global Mental Health and Sustainable Development, South Africa
  7. Dr Beatriz Champagne, Healthy Latin America Coalition, Argentina
  8. Dr Stephen Connor, World Palliative Care Alliance, USA
  9. Ms Katie Dain, CEO, NCD Alliance (Co-Chair)
  10. Dr Mitra Rouhi Dehkordi, The Association for International Sports for All, Iran
  11. Dr Ulysses Dorotheo, South East Asia Tobacco Control Alliance, Philippines
  12. Dr Ibtihal Fadhil, EMRO NCD Alliance, Iraq
  13. Dr Mychelle Farmer, NCD Child, USA
  14. Mr Juan Núñez Guadarrama, Salud Justa, Mexico
  15. Sir Trevor Hassell, Healthy Caribbean Coalition, Barbados
  16. Mr David Kalema, Hope and Beyond, Uganda
  17. Mr Chris Lynch, Alzheimer’s Disease International, United Kingdom
  18. Princess Dina Mired, Union for International Cancer Control, Jordan
  19. Dr Mwai Makoka, World Council of Churches, Malawi
  20. Ms Narcisa Mashienta, Ikiama Nukuri, Ecuador
  21. Dr George Msengi, NCD Child, Tanzania
  22. Mr Christophe Ngendahayo, International Federation of Medical Students Associations, Rwanda
  23. Ms Leslie Rae, Framework Convention Alliance, Canada
  24. Ms Johanna Ralston, World Obesity Federation, USA
  25. Ms Belen Ríos, O´Neill Institute for National and Global Health Law, Georgetown University, USA
  26. Prof Trevor Shilton, International Union for Health Promotion and Education, and International Society for Physical Activity and Health, Australia
  27. Dr Sudhvir Singh, EAT Foundation, Norway
  28. Dr Tara Singh Bam, International Union Against Tuberculosis and Lung Disease, Nepal
  29. Ms Anjali Singla, Movement for Global Mental Health, India
  30. Ms Kristina Sperkova, Movendi International, Slovakia
  31. Ms Charlene Sunkel, Global Mental Health Peer Network, South Africa
  32. Ms Kate Swaffer, Dementia Alliance International, Australia
  33. Ms Phaeba Thomas, HealthBridge South Asia, India
  34. Dr Nick Watts, Lancet Countdown on Health and Climate Change, United Kingdom
  35. Prof Gerald Yonga, East Africa NCD Alliance, Kenya
  36. Dr Yoshitake Yokokura, World Medical Association, Japan

DAI Statement by Christine Thelker #COSP12

Christine Thelker

DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.

Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health

Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.

Prepared Civil Society Statement:

Distinguished Chairs, speakers and delegates

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.

As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.

The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.

As one of the 50 million people with dementia, I am being left behind.

Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.

I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.

Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.

As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.

The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.

Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.

It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.

This is our fundamental right.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.

Thank you.

Christine Thelker

Board Member
Dementia Alliance International

And Then I Looked Up Dementia – Women Speak Out

We are pleased to be part of the launch of this video, highlighting the impact of dementia on women, discussing the higher incidence of women people diagnosed with it, and the higher numbers of woman who become care partners to someone livign with it. Thanks to Amy Little and GAADA for pulling this project together in time for World Alzheimer’s Month 2017.

“Dementia is a global women’s health, social care and rights issue that can no longer be ignored.

And Then I Looked Up Dementia brings together women living with dementia, the actress Carey Mulligan, iNGO women’s specialists, dementia experts, government representatives and others to speak out for women affected by dementia everywhere.

Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is recognised as a global health priority. Around the world, more women than men live with dementia and face gender-specific barriers to living well with the disease.

Globally, women provide the majority of both unpaid and formal care to people living with dementia. People living with dementia can face stigma and even abuse due to their condition, for older women, age and gender-discrimination can compound this treatment. Take action to get it right for every woman living with or affected by dementia around the world.” GADAA, 2017

To find out more visit https://www.gadaalliance.org/women

DAI and ADI continue to work together

Following a DAI, ADI, GADAA and Swiss Government Side event last night at the 70th World Health Assembly in Geneva, I was also able to sign the Memorandum of Understanding (MoU) between DAI and ADI, and this photo is of the new CEO, Paola Barbarino and  me signing it. This means the two organisations will continue to work in collaboration, but autonomously, as sister organisations for the benefits of people with dementia and our families, and ensures we have sponsorship to support people with dementia through DAI.

These are my speech notes for the Side Event mentioned above: 

“NEW OPPORTUNITIES FROM THE GLOBAL ACTION PLAN ON DEMENTIA”

Distinguished guests, ladies and gentleman

People with dementia greatly value the global leadership of  Dr Saxena, Dr Dua and Dr Margaret Chang and their team, in meeting the needs of people with dementia providing this World Health Organisation “Global Action Plan for a Public Health Approach to Dementia” which we hope will be accepted at the WHA tomorrow or soon after.

I was asked to discuss why a global action plan has been so important to me, and was also given the brief to be challenging. Of course, that is not difficult for me.

In reality, we need this plan because care is failing, and research for a cure is failing.

In representing the global community of people living with dementia, although my own experience is unique, I have been campaigning for human rights based approach to dementia for many years. What this means is a whole of health care approach, and support for disabilities to maintain independence for as long as possible, with educated health care workers who provide optimal care that includes rehabilitation, and dignity for all people.

We wish to state today that we are concerned the Global Action Plan provides little evidence of using the UN Convention on the Rights of Persons with Disabilities to underpin the policy, and therefore ask that we all work together to ensure human rights for all, including people with dementia.

People with dementia are fully recognised by the UN as rights bearers under this treaty, which means that the governments of the 173 Member States who have ratified the Convention have been held to account for their inclusion by the UN Human Rights Bodies since the Treaty came into full operation in 2008.

We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

We will continue to advocate for governments and all members of civil society to work towards ensuring the human rights based approach to dementia will be reflected in their national dementia strategies as we work together to implement this plan in society to ensure a higher quality of life for people living with dementia and our families.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder, Dementia Alliance International

Please note, I only had three minutes as part of a panel, so was unable to give a more complete response from DAI to the Plan.