Alteplase (rtPA) now included on the WHO’s List of Essential Medicines (EML) for acute ischemic stroke

Alteplase (rtPA) has made it on to the WHO’s List of Essential Medicines (EML) for acute ischemic stroke

 In the last 25 years, several studies have shown the efficacy of alteplase for acute ischemic stroke. If given within three hours, about one in four patients will have a reduced long-term handicap. This important effect of alteplase already includes its haemorrhage risk of 3-4%.

Despite this important reduction of brain damage, alteplase is only available in two thirds of countries and remains much underused in low and middle income countries. In order to increase access and use of thrombolysis around the globe, the World Stroke Organization (WSO) assembled 13 stroke experts from five continents under the leadership of Patrik Michel (Switzerland) and Michael Brainin (Austria). In 2018, this group submitted a 30 page application to the World Health Organization (WHO) for alteplase to be included in the EML (https://apps.who.int/iris/handle/10665/325771) describing all the pros, cons, conditions, and costs of alteplase.

This week, the WHO informed the WSO that the application was successful: alteplase is now included in the 21st EML, to be used in specialized diagnostic or monitoring facilities and with specialist medical care, as described for example in the WSO's Road Map for Quality Stroke Care.

This new inclusion of alteplase in the EML marks a major step forward for better stroke treatment worldwide, in particular in less affluent countries. All UN-member states are now encouraged to offer thrombolysis for a reasonable cost or for free, such as through Universal Health Coverage (UHC).

And in other good news for the stroke community, the new EML also increases the options for stroke prevention: it now lists fixed-dose dual combinations of antihypertensives, and four direct oral anticoagulants (dabigatran, apixaban, edoxaban and rivaroxaban) as essential medicines. Furthermore, a WSO expert group is currently working with WHO on a list of Priority Medical Devices for stroke prevention and treatment.

These new treatment options are likely to have an important impact on stroke incidence and long-term outcome worldwide, especially in combination with health policy, organized stroke care systems and lifestyle changes. 

Promoting life after stroke at the Stroke Games in Malaysia

World Stroke Organization SSO member the National Stroke Association of Malaysia (NASAM) was founded in 1995 by Janet Yeo after her remarkable recovery from a crippling stroke. NASAM’s mission is to promote stroke prevention awareness and to inform the public that there can be life after stroke with rehabilitation and long term support.

Stroke is the second leading cause of death in Malaysia, where six strokes occur every hour and over 50,000 new cases are reported each year. At its nine stroke centres, NASAM therapists conduct rehabilitation sessions which include physiotherapy, occupational and speech therapy to help stroke survivors regain their confidence and independence. NASAM also organises a range of activities to support daily living, these include cooking, art and craft, singing, music and movement and games.

NASAM recognises that as well as the physical effects of stroke, there are also emotional effects such as depression, anxiety, anger and denial. NASAM therefore also offers counselling services to enable people affected by stroke to find relief and to reinforce the importance of their view and significance of them as a person. At times, counselling is also provided to family members who have trouble coping or adapting to the responsibilities that have changed their lifestyles in caring for a stroke survivor.

NASAM’s objective to increase general awareness about stroke is the impetus behind their talks and forums. Open to the public, NASAM invites medical doctors, and other stroke-related specialists to talk about stroke prevention and stroke rehabilitation.

On an annual basis NASAM organizes nation-wide campaigns to raise public awareness of the risks of stroke and to encourage the public to take positive steps to adopt a healthier lifestyle to reduce their risk of stroke. The programme includes events to encourage the public to be more physically active.  There are also forums, chat shows on TV and radio, and open days at NASAM centres.

From 19-20 October 2019 NASAM will organize its second STROKE GAMES at the Panasonic National Sports Complex, Shah Alam, Selangor. The goal of the STROKE GAMES is to help stroke survivors in their recovery and to develop the “never give up” attitude. NASAM’s tagline is “CELEBRATING LIFE AFTER STROKE”. 

The Games showcase the abilities of stroke survivors and the possibilities of life after a stroke. The event helps people to regain confidence and dignity and instils a new outlook to living life.Sports include individual and group challenges such as basketball shoots, darts, obstacle races, baton relays, seated volleyball, lawn bowling, distance throws, modified weightlifting, modified archery, hand cycle, triathlon, 50m walk, 50m walk with hurdles, 300m walk, table and cognitive games.

The Games are also an opportunity to generate awareness of stroke in Malaysia where stroke awareness is still low and many people experiencing a stroke do not seek medical help fast enough.

For more details on the STROKE GAMES, please visit:

https://www.youtube.com/watch?v=cSgbtvvScM0

https://youtu.be/TKBdkmSq7zc

https://m.facebook.com/story.php?story_fbid=10156246771918845&id=96974848844

www.facebook.com/NationalStrokeAssociationMalaysia

www.nasam.org/event-details/?id=20

. 

The burden of stroke is unjust and action is needed

The Tanzania Heart Club became a stroke support organization member of the World Stroke Organization in 2019. Here, Hussein Liobike, a community health worker, tells us why he was motivated to start the organization to fight against the burden of stroke and heart attacks and get involved in stroke support.

·         What has inspired you to be involved in stroke support?

The inspiration is that I want to support stroke survivors as they face many challenges, including social and economic challenges and I want to help to unite them so that they can have a stronger voice in our country and globally. Stroke is a leading cause of death and disability. For stroke survivors and their families it can result in economic hardship. My inspiration is to contribute to reducing strokes in our society and to ensure those that have had a stroke access support. National strategies don't always prioritise their needs, so we need to make sure that they have the appropriate support that they need and to create centres and opportunities for stroke survivors to access services.

·         What does stroke support look like in your country?

Stroke support in Tanzania is a still problem because many people don't understand what life after stroke is like and what the needs of stroke survivors are. So we are raising awareness about life after stroke and in the meantime we must support survivors' needs. We are working with stroke survivors to fully understand their experience so that we can provide appropriate support. We are working with families and stroke survivors to support them in daily activities and to keep active. 

·         How did the project come about?

The project came about after recognising the challenges stroke survivors face and the fact that there is a national stroke burden in Tanzania that is leading to a large number of disabilities and deaths. The burden of stroke and loss of life and disabilities is unjust and I knew that we must take action. 

·        What has been the feedback from stroke survivors to the project?

The stroke survivors that we support are really positive about the help that we can give, they remain engaged with us and report that they are making progress in their recovery and that we give them hope. The challenge is that we need more tools to support us in our life after stroke activities. We also have to take time to help stroke survivors understand what recovery after stroke can be like, some think that they can be cured by taking some pills. 

·        What has been the response from others – community, doctors, politicians?

·       In the community the mindset about stroke is changing, people are recognising that they need to seek early treatment from hospitals rather than from traditional healers, and that rehabilitation is essential for recovery.  Doctors are increasingly understanding how important rehabilitation is to the survivors and  some of them are providing rehabilitation services. However these services are not accessible to everyone as they cost money, so we try to advocate for survivors to access free rehabilitation. Politicians are beginning to understand the need for rehabilitation and I am talking with parliamentarians about rehabilitation services in Tanzania, but this will take time as they have many competing priorities.

·        What would you say to other people to make them take stroke prevention seriously?

We are sharing with people that stroke can attack anyone, at any time and any age, and can therefore affect peoples' economic viability. We stress the importance of taking stroke prevention seriously by knowing the risk factors for stroke. We are promoting the importance of paying attention to your health and to engage in physical activities, reduce salt and to be aware of and manage high blood pressure. We know that behaviour change can be difficult, so we are persevering!

When it comes to Stroke - Don’t Be the One

World Stroke Day 2019 will focus on stroke risk and prevention

Sample poster with WSO member co-branding

The World Stroke Organization has announced the theme for World Stroke Day 2019. With a focus on stroke prevention, the ‘Don’t be the One’ campaign aims to mobilise members, partners and the wider stroke community to raise public awareness of our individual life time risk of stroke and to equip as many people as possible with potentially life-saving prevention information and tools.

The rationale for the campaign message is the recent WSO analysis of the Global Burden of Disease, which shows that globally the lifetime risk of stroke has risen and now stands at 1 in 4. Combined with the Interstroke findings that showed around 90% of strokes are linked to a small number of easily addressed risk factors, the potential impact of public understanding of stroke risk and prevention awareness is clear.

Speaking about the World Stroke Day campaign, World Stroke Organization Vice President and Campaign Committee co-Chair, Sheila Martins said ‘For me the 29^th October is always such an exciting day for the stroke community – it’s the one day of the year that we can come together globally and to make as many people as possible aware of stroke. This year our message When it comes to stroke, think prevention – Don’t be the one.’is relevant and essential to everyone and we look forward to seeing the stroke community taking up the campaign in countries around the world!’

Co-Chair Deidre De Silva and a leading awareness campaigner Singapore ‘Our team strived to deliver a campaign that will resonate with diverse populations around the world. Stroke is not prevented by hoping it will never happen to you. This campaign encourages everyone to be proactive by understanding their stroke risk and taking the steps to prevent stroke and its devastating consequences.'

World Stroke Day Campaign Resources

A campaign guide for members and the public will provide guidance on how to join the global prevention awareness effort. This will be available from the revamped World Stroke Day website. Members and partners will have access to campaign resources including the campaign video, gifs, editable posters, infographics, social media posts and translated prevention factsheets. 

Stroke Riskometer 

The Campaign team is also working in close partnership with the Stroke Riskometer team at Auckland University of Technology to promote the WSO endorsed Stroke Riskometer as a tool to understand individual stroke risk and to identify individual risk factors. Riskometer users will be encouraged to conduct their own risk assessment and to share the app on social media tagging four friends. If one person who is tagged downloads and uses the app, they will have free access to an app upgrade that will support them to take appropriate action to reduce their stroke risk. 

To find out more about how you can support the campaign please email campaign@world-stroke.org

Dr Inna Lutsenko World Conference on Research Integrity 2019 at Hong Kong University

Sharing all of our stories to raise awareness of stroke

At the World Stroke Organization, our work with patient stroke support organizations (SSOs) promotes the voice of people affected by stroke in our activities, including the World Stroke Congress and the World Stroke Campaign.

We recognise that people affected by stroke have unique insights into the experience of having a stroke, the effects, the care received and long term needs. These insights can and should inform stroke policy development and service provision. We also know that the voice of stroke survivors adds legitimacy to our advocacy work.

We work closely with our SSO members to capture and share stories from stroke survivors, carers and family members. These stories detail the lived experience of having a stroke, the effects and the impact on peoples’ lives. Often these stories include reflections on individual behaviour and making changes to reduce stroke risk. All the stories are deeply personal, and can describe feelings of pain, fear, confusion and also hope; a new normal and strength.

Credit: Stroke Foundation Australia

Recently to mark World Hypertension Day, Sharon McGowan, CEO of the Stroke Foundation Australia and also Co-chair of the SSO Committee at the World Stroke Organization, shared her own story.  ‘I thought long and hard about sharing my own health story. I was encouraged by the many stroke survivors who generously share their stories to encourage, educate and support our community. If just one person reads this and takes action to get their blood pressure checked then sharing my shamefully unhealthy past will be worth it’.

As a champion for the voice of people affected by stroke, by sharing her own personal story, Sharon is a great role model to others, and has added a deeper appreciation at the World Stroke Organization of the courage it takes for people affected by stroke to share their personal experiences so openly.

If you would like to add your voice and experience to the World Stroke Organization’s work to raise awareness of stroke, please contact the International Development Manager, Sarah Belson sarah.belson@stroke.org.uk

Changing the devastating effects of stroke in Malawi

The Malawi Stroke Unit Team has a goal to provide a cost-effective stroke unit that will help revolutionise the lives of people in Malawi that are affected by the implications of stroke. 

University College London Hospitals has partnered with Queen Elizabeth Central Hospital, Blantyre, Malawi, the Malawian government, Liverpool University (via the Wellcome Institute in Malawi), and UCL, to build and then run a stroke unit. 

The UK team are helping to plan the unit, helping to develop the unit operational systems and will help train the staff, but the unit itself will be led and run by the Malawian clinical team. The aim of the partnership is to develop a sustainable model for stroke care in Malawi. Currently there are no stroke units at all in the country, but very high rates of stroke incidence and stroke related death. 

Stroke is a common presentation at Queen Elizabeth Central Hospital and is in the top five reasons for hospital admission and top three reasons for in-hospital mortality (SPINE 2012 analysis).  Malawi currently has a poor stroke outcome compared to its neighbouring countries, with local data showing that nearly 40% of people having a stroke die at six months.

Specific risk factors for death are increased stroke severity, advanced immunosuppression from HIV infection and age. The former two risk factors are potentially preventable with easily achievable intervention such as early swallow screen, immediate therapy (where guardians could be trained to deliver this), close vigilance for infections whether it be central nervous system infections, aspiration pneumonia or urinary tract infections, and initiating and maintaining secondary preventative treatment. 

The target over the next 10 years is to deliver a seven-bedded stroke unit that is embedded within Queen Elizabeth Central Hospital. This unit will serve as a national centre of excellence for delivery of stroke care, training and research to further inform best practice, and ultimately improve the burden of stroke in Malawi. The aim is also to ensure that the stroke unit is culturally appropriate and sensitive to the limited resources available in Malawi.

This partnership offers collaborative opportunities for the stroke multi-disciplinary team, both in the UK and Malawi. Thanks to funds from TNM (a Malawian telecommunications company), construction of the building has already begun and is scheduled for completion by Autumn 2019 along with an ongoing training and exchange programme.

For more information on supporting the partnership please visit:

https://malawistrokeunit.org/

June Event

Auction Catalogue

Survivor Voices Heard Loud and Clear in Stroke Awareness Month

Sharing member highlights from Stroke Awareness Month 2019

In many countries May is traditionally the month to talk about all things stroke. Across the USA and Europe Stroke Awareness Month has been marked on the calendar of stroke organizations and stakeholders as a key opportunity to raise public awareness and start conversations about stroke. 

Famous or not speaking publicly about stroke, while crucial to raising awareness and reducing the stigma of stroke, can be extremely daunting. But the decision to  ‘step up to the plate’ by several high-profile stroke survivors in May 2019 has given stroke perhaps higher visibility than ever and served as a vital support to those of us who have important stories and information to share.

The decisions of Michael Johnson, once the world’s fastest man, talking about his long journey to recovery after stroke and of Game of Thrones actress Emilia Clarke to share her story have been incredibly helpful in reaching the wider public and showing that with the right care, treatment and rehabilitation stroke is treatable and beatable. The death of movie director John Singleton at the age of 51, while just one of many less well known people who have lost their lives to stroke recently, did much to highlight the tragic impact of stroke, the fact that many strokes happen to younger people.

In the UK, the Stroke Association the country’s first ever TV stroke advertisement was aired in May as part of a partnership campaign with the UK’s Channel 4 network. The 60 second piece which is part of a wider media campaign, uses the voices and faces of stroke survivors to describe the moment that their stroke hit, the need for support with recovery and is working to ‘change the face’ of stroke survivors.

Elsewhere in Europe, members of SAFE kept the WSO #UpAgainAfterStroke campaign flag flying with a month-long focus on stroke rehabilitation and long-term support across the region. From politicians to family members a multitude of voices shared their perspectives on the urgent need to develop better and more equitable access to rehabilitation and care. The translation and dissemination of the European Burden of Stroke report gave policy weight to the awareness campaign offering a valuable advocacy tool for stroke organizations in the region. 

Outside Europe, but equally focused on stroke survivor experience, the new but fast-growing Michael and Francisca Foundation in Nigeria took the opportunity of Stroke Awareness Month to run a special event for stroke survivors to connect, share stories, challenges and inspiration. 

In the USA the American Stroke Association focused on the fact that the biggest single risk factor for stroke is having already had a stroke.  ASA’s campaign ‘Don’t let stroke strike twice’ was a supported by an online patient education resource highlighting key risk factors and encouraging survivors to ask their doctor to create a personalised stroke prevention plan.

It really seems like a change is happening in relation to stroke awareness and as we look forward to World Stroke Day, we will be learning from and building on the work of our members in May and collaborating to make the many voices of stroke sound loudly on October 29th.

Well done to all of our members who worked hard during May to raise stroke awareness. If you would like to share your Stroke Awareness Month highlights with us, you can post to our Facebook page or tag @WStrokeCampaign on twitter.

Supporting stroke survivors not just to survive but to thrive

Craig Pankhurst, a stroke survivor from the UK, has established an exciting new stroke support organisation that combines his pre and post stroke life to support the recovery of stroke survivors using physical exercise.

Married with two daughters, two dogs and a cat, Craig is a keen sports fan and spent his younger years swimming and playing football, becoming an international swimmer in the 1990s.

Craig had a stroke on 28^th April 2018, at the age of 39.

‘It was in the act of blinking my eyes at 6am that I first realised I was not in a good way. The overwhelming feeling of the room spinning uncontrollably, yet in darkness as my vision had gone, resulted in a feeling of dread and fear. Little did I realise that at the age of 39 I was in mid-ischemic stroke and that life was about to change forever’.

Craig was admitted to Arrowe Park hospital for CT and MRI scans, with friends and family by his side. He had significant damage to his brain, with further scans showing a dissection of the vertebral artery.  

Craig’s biggest issue is post-stroke fatigue. ‘It is a dreadful experience that a sufferer has to live with every day. It is not like being tired’, says Craig. He manages his fatigue via a traffic light system. When he’s in his ’green zone’ Craig’s able to function pretty much as he could pre-stroke, albeit with a slight left-side weakness and concentration deficit. When in his ‘amber zone’, his speech and thought processes slow down and his left side weakness is more pronounced. In ‘red zone’, Craig becomes very limited in his movement and struggles to communicate effectively.

Craig has always been a very motivated individual who thrives on setting goals. He believes these traits will continue to support him in his recovery.  ‘Under the care of the Walton Centre in Liverpool, I continue to manage my rehabilitation to ensure I am best placed to live a positive and full life. This is why I wanted to start a charity to inspire fellow stroke survivors to embrace their new life in a similar, positive way. Meeting other stroke survivors, I realised that self-image and self-esteem are significantly affected and after the initial rehabilitation phase patients are signed off to continue their recovery on their own, exacerbating this loss of confidence. What has really helped me has been to find a personal trainer and a gym that can support my physical recovery, improving my self-confidence. A Stroke of Luck will do the same for survivors who may not have the same expertise or resources to do this for themselves, and need a bit of support’.

A Stroke of Luck launched on 1^st May 2019, only a few days after the first anniversary of Craig’s stroke, and the beginning of Stroke Awareness Month. There are over 1.2 million stroke survivors in the UK and 100,000 new strokes each year. Over two thirds of these survivors leave hospital with a disability. ‘We need to provide the opportunity for survivors to get active and promote physical rehabilitation for the benefit of all’, says Craig.

A Stroke of Luck will match stroke survivors with fitness professionals to help them to get active. A web platform is being developed where stroke survivors will register to become a member of the ‘A Stroke of Luck Survivor’s Club’, with access to health and wellbeing advice as well as fitness videos.

Personal trainers will also register to become a member of the ‘A Stroke of Luck Expert’s Club’.  Funding received by A Stroke of Luck will be converted to credits that can be used by the stroke survivor to book a session with a qualified A Stroke of Luck approved personal trainer.

Friday 6^th September 2019 will be the official launch of the A Stroke of Luck membership portal. ‘We don’t just want stroke survivors to survive, we want them to THRIVE. We would like to enhance the lives of every stroke survivor, regardless of their post-stroke effects, by giving them access to long-term physical and emotional care following the discharge from medical professionals’, says Craig.

For more information and to support A Stroke of Luck:

Please visit the A Stroke of Luck website www.astrokeofluck.co.uk

This blog includes extracts from the Wirral Life article Stroke Survivor Launches New Charity https://www.wirrallife.com/digital-issue

Know your Numbers - World Hypertension Day 2019

Today, May 17th is World Hypertension Day and we are supporting our partners’ efforts to raise awareness of hypertension and high blood pressure. Hypertension, or high blood pressure is a circulatory disease that is associated with almost half of all strokes. Knowing your numbers and managing your blood pressure is one of the key steps that in individuals and health workers can take to reduce the global burden of circulatory disease and stroke. The World Stroke Organization works closely the World Hypertension League and partners in the Global Coalition for Circulatory Health to draw attention to the need for more effective prevention, diagnosis and management of hypertension. As part of this partnership and in preparation for the commemoration World Hypertension Day next week, we are pleased to publish a guest blog from World Hypertension Lead President, Daniel Lackland.

The theme for World Hypertension Day 2019 is Know Your Numbers and the goal is to build awareness of high blood pressure (BP) how it can be prevented and managed in all populations around the world. This decision was based on global statistics, indicating that despite the dangers of unmanaged hypertension, only 50% of individuals with the condition were aware that they actually had high BP. In some populations, awareness is very low, at <10%. Building awareness of hypertension diagnosis has two critical components: (1) establishing high‐capacity community screening programs for BP in those at risk, and (2) promoting routine measurement of BP by health‐care professionals at all clinical encounters. These critical diagnostic steps will help to control hypertension in the global population and move us closer to achieving the United Nations goal of a 25% reduction in uncontrolled hypertension by 2025.

WHL, with their member organizations will work to implement screenings globally, but we also strongly encourage any WSO members who conduct BP screenings to contribute reports recorded in May 2019. This will help us to, not only raise individual and community awareness of hypertension, but to build more effective responses to hypertension in our shared communities.

A reporting form is available on the WHL Web site (www.whleague.org). Participants are asked to provide general information on their team, location, number screened, and NCD education provided. Participants may also report on proportion of known treated hypertensive people screened whose BPs are “controlled” (<140 mm Hg systolic and <90 mm Hg diastolic).

WHL recognizes that there are complex challenges to the prevention and control of hypertension globally, and, in most settings, efforts to prevent and control hypertension are not comprehensive, or coordinated. We can do our part to improve that, by working together in partnership to mark WHD to ensure rigorous BP measurement and NCD awareness efforts in the community and clinical settings. I strongly encourage you to start planning, gathering resources and reaching out to your communities now to help address the biggest single risk factor for stroke.


Further resources
· Resources to support screening initiatves can be accessed from (http://www.whleague.org/index.php/j-stuff/blood-pressure-assessment-train-the-trainer). In addition to screening protocols, a Train the Trainer module for establishing an evidence‐based BP screening site, supporting PowerPoint slide sets and YouTube videos, are available.

Excerpts from the stroke support organization main session at the 2018 World Stroke Congress are now live on the World Stroke Academy

There was significant stroke support organization (SSO) representation and content at the 2018 World Stroke Congress in Montreal, and for the first time the SSO main session was recorded and excerpts are now available on the World Stroke Academy. 

There was a range of SSO activity throughout the World Stroke Congress. The Testimonial Exhibition and e book included 145 stories of people affected by stroke from 28 countries. During the Congress the posters were placed by the list of Congress participants, and many delegates commented that it was a reminder that people affected by stroke across the world are a fundamental part of the World Stroke Congress – ‘the reason we are here’.

The SSO main congress session opened with ‘The power of SSOs as change agents to improve stroke systems of care’, chaired by Heart and Stroke Canada. The first presentation is on the Canadian experience of the building blocks for stroke systems change. The presentation on Heart and Stroke’s indigenous health strategy highlights that bringing together different knowledge systems can generate innovation. The talk on driving systems change in a complex political environment, stresses the importance of keeping a focus on patient and caregivers’ needs and ensuring transparency.

The last talk in this session is by Sheila Farrell, a Canadian stroke survivor. Sheila emphasizes the gaps in long term stroke support for survivors, and the importance of listening to survivors’ experiences to understand the reality of life after stroke, and to help build a better roadmap for future stroke survivors. She calls for the loop to be closed between scientific research, the disciplines of the healthcare system, the community and the patient.  

The next SSO session focuses on some of the less talked about effects of stroke. We hear about stroke specific end of life issues, including communication difficulties and the lack of discussion on end of life planning, as stroke is often a ‘bolt from the blue’. The relationships and intimacy talk highlights the fear and concern often felt by stroke survivors in relation to these issues, and the need for training to build the confidence of health care professionals in discussing relationships and sexuality.  The third talk in this session looks at psychological changes as a result of stroke, and underlines the importance of sharing stroke survivor testimonials to highlight the psychological impact of stroke, to challenge stigma and to encourage stroke survivors to identify with others; building peer support. The conclusion of this session is that there is a crucial role for SSOs across all these issues: to advocate for better support, training and research; to identify and meet needs and gaps through their stroke support activities; and to develop resources.

Thank you to all the SSO speakers and to the congress delegates who engaged so positively with the important work that SSOs are doing across the world. 

If you are a member of WSO you can access the SSO content here https://world-stroke-academy.org/wso/2018/montreal/261548