NOTHING ABOUT US, WITHOUT US: A NEW FILM SERIES ON PEOPLE LIVING WITH NCDs AND MENTAL HEALTH CONDITIONS

People with lived experience of NCDs and mental health conditions can provide powerful expertise and narratives to shape policies, inspire others to join the movement as agents of change and influence, inform those in power and improve health outcomes. If meaningful engagement of individuals with lived experience of NCDs and mental health conditions is standardized, scaled up and sustained across all levels of WHO and Member States, it can act as one of the catalysts for change - improving the health and well-being across income settings.

The right to participate is an essential feature of the right to the highest attainable standard of health. People living with health conditions should be at the centre of decisions that impact their lives from start to finish. Models for meaningful engagement should be co-designed, structured and mobilized at the inception of programmes, policies and health services.

Intersectionality and diversity of lived experience should be central to all engagements. This particularly includes providing opportunities for individuals from marginalised groups to better understanding access to challenges and solutions from a contextual lens. Protective and enabling environments, where individuals are free from stigma, discrimination and criticism and can openly convey their needs and experiences, is required for meaningful engagement.

Below, you will see a series of videos launched this week by the Global Coordination Mechanism for NCDs (GCM/NCD), sharing what lived experience means to people living with NCDs and mental health conditions around the world. All the videos here are shared in English, but are available in all six UN languages!

In the municipality of Ghobeiry in Lebanon, Ali motivates others in his community to exercise, eat better food and lead a healthier life, after being diagnosed with type 2 diabetes in 2017.

“People may not be taking care of themselves, not because they can't buy medicine, or are without access to healthy food. They would have all the tools, but they are unable to use them for underlying mental reasons.”

Individuals and communities with first-hand experience in living with NCDs and mental health conditions hold the key to designing effective, inclusive, equitable health interventions that leave no one behind. Their voices can unlock opportunities to overcome barriers in accessing and sustaining health care. The right to participate in one’s care is also a fundamental part of the human right to the highest attainable standard of health. 

LaVerne, a breast cancer survivor, mother, and community leader from Redfern, Australia, regularly organises screenings and health promotion activities with Aboriginal women. 

“We have screening days where we bring the mammogram bus. We have lunch, we get hairdressers in, beauty practitioners. It's a real ladies’ day. It enables them to feel free and talk among themselves. Aboriginal women, you know, young women, they don't want to go and take all their clothes off and get tested.”.

Crucially, meaningful engagement and co-designing health policies imply a shift from the individual as a passive user to an empowered and valued agent of change. People with lived experience do not only require a seat at the table of decision-making, but should be able to drive processes, co-create programmes, and implement contextual solutions.

Helena, a paediatrician and mother living in Sheffield in the United Kingdom of Great Britain and Northern Ireland, was already living with multiple disabilities caused by an auto-inflammatory disease when she was diagnosed with cancer in 2009. 

“I went from being a very active, very dynamic paediatrician, mother, and athlete […] to being in a wheelchair. I was extremely independent, and – as a woman – felt very strongly about being a role model for my boys. I think that is what you have to learn to hang onto, that on the inside, you haven't changed.”

“I am learning how to undertake advocacy in this sector, […] as I found that not all people with rheumatic heart disease are united and there is no group or support system.”, says Anu Gomanju, a public health professional and graduate student in Nepal, who was diagnosed with the health condition at the age of 11.

“If we can come as one, we can share our challenges or experiences as my problem could be a solution for someone else.” 

Despite recent progress on this topic, meaningful engagement does all too often not take this hurdle from intention to action and risks to remain a tokenistic tick-box exercise. 

Hauwa, a mental health and human rights advocate from Nigeria, was sexually assaulted in 2013 and diagnosed with bipolar disorder two years later. 

“We know what is best for us. That is why our needs, our choices, voices, and experiences have to be prioritized. We need to tell you what support looks like for us. We need to tell you what a system that is just and equal and fair looks like for us. We need to tell you what human rights respecting treatment looks like for us.” 

Amid the complex and interconnected global health landscape, the meaningful engagement of people with lived experiences is increasingly becoming a mainstay. In light of the global epidemic of NCDs, the recent COVID-19 pandemic, and persisting health inequities, understanding the complex determinants of health conditions and upholding principles of respect, value and dignity are equally crucial. 

Dr Mark Barone, the Brazil-based vice-president of the International Diabetes Federation:

“When I received the diagnosis, it was […] difficult to deal with a situation that was now mine. Even though I saw other people with diabetes […], they were much older, and I didn't know anyone my age who had diabetes. That's why it's not easy to face it."

Meaningful engagement of people with lived experiences also pays particular attention to the voices of marginalized or neglected groups and communities. Community networks play a vital role in providing people with access to critical information and support and breaking down siloes and barriers.

INVEST TO PROTECT: GLOBAL WEEK FOR ACTION ON NCDs

This week marks the start of the Global Week for Action on NCDs!

A lack of resources and investment in NCD prevention and care has long been the Achilles’ heel of the NCD response. This year, let’s bridge the NCD investment gap and see this change! It is all about prioritising the urgent need for increased NCD financing to prevent and treat NCDs and build resilient health systems that leave no one behind. Despite causing three in four of the world's deaths, financing for NCDs has stagnated at a pitiful 1-2% of development assistance for health for the past two decades. This is causing many millions of deaths and pushing millions more into extreme poverty due to health care costs and disability. 

On 8 September, WHO is cohosting a high-profile event with NCD Alliance and the World Diabetes Foundation, focused to the urgency of investing in NCD prevention and care. It will also start the discussion on what success at the Second WHO Global NCD Financing Dialogue in 2023 might look like, and what it will take to achieve this.

This virtual dialogue will unpack the priorities set out in the NCDA financing brief “Invest to Protect: NCD financing as the foundation for healthy societies and economies”, harnessing the momentum of the Global Week for Action on NCDs as a unifying platform for the global NCD movement to call upon governments, organisations, and individuals to act on NCD prevention and care and to leave no one behind.

We sincerely hope you can join us.

PREPARING FOR THE WORLD REHABILITATION ALLIANCE

In many countries around the world there is an urgent need to strengthen rehabilitation. Globally, an estimated 2.4 billion people are living with a health condition that could benefit from rehabilitation. This number is expected to grow due to people living longer and with more chronic disease and disability. It is estimated, however, that in low- and middle-income countries, more than 50% of people do not receive the rehabilitation they require, while the full impact of the COVID-19 pandemic on future rehabilitation needs is also yet to be seen.

The World Rehabilitation Alliance is a WHO global network of stakeholders whose mission is to support the implementation of the Rehabilitation 2030 Initiative through advocacy activities. It focuses on promoting rehabilitation as an essential health service that is integral to Universal Health Coverage and to the realization of Sustainable Development Goal 3, ensuring healthy lives and promote well-being for all at all ages. 

In preparation for the commencement of the World Rehabilitation Alliance advocacy activities, WHO will be hosting an event on 13 September. From 14:00 to 15:00 CET, join us to:

• Announce the Steering Committee members;
• Highlight the need for and the added value of the World Rehabilitation Alliance; and
• Introduce the five workstreams of the World Rehabilitation Alliance.

If you would like to be involved for membership, we encourage interested and eligible organizations to apply for membership as soon as possible to be part of workstreams workplan development following the pre-launch. We hope you can join us.

WORLD HEARING FORUM

Over 5% of the world’s population (430 million people) require rehabilitation to address their ‘disabling’ hearing loss (432 million adults and 34 million children). By 2050, it is estimated that over 700 million people - or one in every ten people - will have disabling hearing loss.

The World Hearing Forum is a WHO-hosted global alliance advocating for ear and hearing care. The Forum brings out a quarterly newsletter which covers a wide range of news on hearing.

In our latest issue, you can read inspiring stories of champions making a change in the field of ear and hearing care, learn about the actions of World Hearing Forum members and the Forum's working groups, and learn of recent developments in ear and hearing care.

Also last week, Dr Bente Mikkelsen, Director, Noncommunicable Diseases at WHO HQ, joined eminent global health leaders as part of the H20 Annual Summit, focused on forming a new age of health multilateralism and partnerships.

Dr Mikkelsen delivered her intervention, alongside Dr Téa Collins of WHO,  on the question of: why is cardiovascular disease the no. 1 killer worldwide despite being preventable? You can watch the discussion above!

TECHNICAL EXPERT MEETING ON BEHAVIOURAL INSIGHTS AND SCIENCE

Behavioural science is an exciting opportunity to complement and optimise the reach and impact of NCD interventions, including the WHO NCD Best Buys. Last week, WHO held its first ever Technical Advisory Group on Behavioural Insights and Sciences for Health. 

The group is composed of renowned experts representing a broad range of disciplines relevant to behavioural insights and sciences, including psychology, behavioural economics, anthropology, social marketing and more. The group focuses on:

• Advising WHO on how to adopt behavioural insights and science perspectives to support WHO’s 13th General Programme of Work;
• Making recommendations for WHO to develop an operational framework to mainstream behavioural insights and sciences into WHO work, particularly providing technical advice on national health policies and programme planning;
• Advising WHO on potential challenges and risks for the Organization related to the recommendations made by the TAG.

NCDs formed a core part of the Technical Advisory Group meeting, including a discussion of ways to align the NCD management and behavioural insights agendas together, and using behavioural insights to inform NCD country country work. Also discussed was a possible handbook on ‘communication for behavioural Impact’ (COMBI) for the prevention and control of NCDs.

The group will now publish a meeting report on behavioural considerations in the design and implementation of NCD interventions.

HOW WHO IS SUPPORTING TIMOR-LESTE TO BEAT NCDs DURING THE PANDEMIC

NCDs are the leading killers of Timorese people, and their control and containment are among the country’s top national public health priorities. However, the Covid-19 pandemic posed a significant obstacle and challenge to the country’s commitment and efforts to control NCDs and their risk factors. 

As a close, trusted and a reliable partner of the Ministry of Health and the government of Timor-Leste, including during public health emergencies, the WHO demonstrated this close bond with its continued and unwavering support to the country’s battle against the NCDs.

Timor-Leste is among countries with highest tobacco users in the world. WHO supported the country to establish its first ever comprehensive tobacco cessation center in October 2021. Within six months of its operations, assisted more than 500 tobacco users to quit. With such success and interest from tobacco users, WHO continued to support the Ministry of Health’s desire to expand cessation service throughout the country by integrating with mental health and other NCDs in primary health facilities of all its municipalities. Comprehensive tobacco cessation service have been expanded to 7 of the 13 municipalities.

Timor-Leste depends on other countries for all its essential medicines and technologies, a situation pressured by the international border closures during the pandemic.  The pandemic has also added to the growing mental health burden in the country. WHO has supplied the Ministry of Health with NCD kits, containing essential medicines and devices for the management of NCDs, covering the gap for medicines such as insulin and medicines for mental health conditions that ran out or faced acute shortages.

Support for the WHO Package of Essential NCD interventions in primary health care (WHO PEN package) was expanded to nine municipalities during the pandemic, to facilitate the early identification and timely management of NCDs and their risk factors.

Finally, the need for physical activity was even more during the pandemic. Therefore, as part of the comprehensive physical activity promotion, WHO procured open-air gym equipment and supported the Ministry of health to install multiple gym sites in multiple municipalities, with each site being declared tobacco, alcohol, and drug free zones. 

HOUSEKEEPING AND COUNTRY IMPACT

As part of efforts to improve WHO communications, we always want your feedback of what you like, and what you would like to see more of! Send me your feedback below.

We are also piloting a new On The Pulse feature series, working with WHO Regional and Country Offices to explore our country impact on NCDs! If you would like to be kept in the loop about this, please also let me know by writing.

THE TWEETS WE RETWEET

• Follow and amplify the Global Week for Action on NCDs using #ActOnNCDs on social media! (September 2022)
• Share your views about investment in NCD prevention, treatment and care and why it makes financial sense, as part of a forthcoming NCD webinar on 8 September (September 2022)