Growing stronger with COVID-19: An exceptional year for the haemophilia community

An online drawing event for young people with haemophilia in West Bengal, training sessions broadcast live on social channels in Mexico, specific emergency donations for purchases of protective equipment and essential supplies in 22 countries: how supporting each other in troubled times has helped our partners and strengthened our community.

Solidarity, adaptability and resilience: since we last reported on the unprecedented challenges of COVID-19 in June, the Novo Nordisk Haemophilia Foundation (NNHF) and its partners have continued to think and act outside the box in order to support people living with bleeding disorders throughout 2020.

In July, the NNHF held its first virtual global workshop, enabling 50 project partners from 35 countries to explore how best to adapt to the coronavirus pandemic. Together, we looked at long-term solutions for care and treatment, from home-based to virtual support, as well as ways to reach community members without online access. Following the event, a survey to gauge the impact of the workshop showed an overwhelming willingness on the part of our partners to adapt to the new reality.

“We really appreciated this workshop as it opened up new ideas and ways of adapting our activities to strengthen and standardise care in our country despite the limitations brought by the COVID-19 pandemic,” said Dr Tulika, Department of Haematology Professor at All India Institute of Medical Sciences. “The challenge has been all the greater as our project was just getting started when COVID-19 began. It was inspiring to hear what other NNHF partners are doing in different countries.”

Adapting to a new reality

The need to adapt activities and timelines has impacted more than 90% of the NNHF’s 55 ongoing projects in 2020. Training for health care professionals had to be reorganised either in a virtual format or in smaller groups. In Madagascar, Botswana, Mali and Mauritius, for example, training sessions in small groups were led by local professionals instead of international experts.

In countries with fragile economies, the first concern was to ensure that people in the bleeding disorders community were able to put food on the table.

Healthcare professionals prepared the distribution of shields, masks and hand sanitiser across Indonesia

“The challenge for us was balancing the urgent need for extraordinary measures while never losing sight of our purpose as a foundation dedicated to improving care and treatment of haemophilia and bleeding disorders,” commented Denise Brændgård, General Manager, NNHF, in an interview in September with Switzerland’s Radio SRF. “With the agreement of our Foundation Council, we were able to support our partners by delivering basic food supplies in addition to our usual support, because it was vital for our partners to continue to help people with haemophilia.”

Through specific COVID-19 donations in 2020, the NNHF provided material support to haemophilia communities in 22 countries, helping over 7,400 families through the distribution of personal protective equipment, hygiene products and basic food supplies. Overall, the NNHF project partners distributed more than 196,000 face masks, 4,700 litres of hydroalcoholic solution, over 15 tons of rice and many other primary-need items.

NNHF partners also played a key role in the distribution of emergency supplies. Moeketsi Mootisa shared heartfelt gratitude on behalf of the Haemophilia Association of Lesotho (HAL): “The support came at the right time, just when our community was badly affected by COVID-19. Due to restrictions in our country, it was not easy to arrange centralised collection so the HAL team went the extra mile to ensure that parcels were delivered.”

Haemophilia Association of Lesotho (HAL) organised the distribution of emergency supplies to people with haemophilia and their families.

A big concern for the bleeding disorders community in many countries was interruptions in care due to lockdown. From Namibia to Uzbekistan, members voiced concerns about people with haemophilia missing needed treatments due to fear of coronavirus exposure or the inability to travel long distances.

“COVID-19 has undoubtedly impacted treatment and care as patients were not able to visit haemophilia clinics as a result of travel restrictions. We have initiated a system where patients who have bleeds can contact the nearest clinics and we are able to deliver factor to them,” commented James Kago, Kenya Haemophilia Association Board Member.

New ways of supporting people with bleeding disorders

The pandemic has underscored the need to reach people living with bleeding disorders in remote regions. Here again, the NNHF partners have proven to be innovative and resilient. The team in Indonesia are working on a video tutorial on self-infusion while in Mexico, educational videos are being developed to be broadcast on the hospital’s online channels. In Peru an online registry has been developed. In Mauritius the team are working on an app to allow monitoring of bleeds and direct communications with the treatment centre.

Success stories are all the sweeter in the face of adversity. The Nepal team saw years of advocacy efforts rewarded in June when treatment was procured for the first time on the national health care budget allocated for haemophilia care.

Also in Nepal; masks and hand sanitiser have been distributed to the haemophilia community.

Nabin Chandra Dhungel, Nepal Hemophilia Society President: “Advocacy is a powerful tool. But with travelling and physical meetings highly restricted due to COVID-19, we had to rely on virtual meeting platforms which don’t have the same impact as explaining the issues face to face. So, we used different channels to raise our voice at all levels of government, from open letters and local media to networking through organisations working for the rights of persons with disabilities.”

Growing stronger, together

The past year has been a time of exceptional challenge, one which is set to continue as we begin 2021. Yet 2020 has been rich in learnings. As we increasingly use digital tools to support our communities, virtual events offer the chance for people with different perspectives to participate from around the world. These cross-regional connections enable the sharing of experiences, tools and approaches.

Never before has being part of a global community been so important. As the NNHF partners in different countries work together to support people with haemophilia from near and far, the silver lining could be that COVID-19 is making our community stronger.