Covid-19: Unprecedented challenges led to unprecedented initiatives in the haemophilia community

The coronavirus pandemic has confronted the world with an unprecedented situation.

Since the outbreak of the pandemic, the Novo Nordisk Haemophilia Foundation (NNHF) has offered support to its partners and people with haemophilia, with the objective of restraining the spread of the virus and protecting the haemophilia community, healthcare professionals and the wider population, in countries where NNHF partners are currently implementing projects.    

A grassroot approach, two key priorities

To start, the NNHF team has worked closely with each partner to reassess project objectives and timelines, as several trainings, events and meetings were scheduled to take place when the World Health Organization warned the global community about the spread of the coronavirus. 

In several countries where the healthcare systems are fragile, the consequences of the pandemic could be catastrophic. Furthermore, for people living with haemophilia or other bleeding disorders, a disruption in access to care could lead to disabilities or be a serious threat to people’s lives.

Unprecedented circumstances led to extraordinary initiatives

Some NNHF partners had spontaneously taken initiatives to support members of the bleeding disorders community in their country. They have provided inspiration to NNHF that was worth sharing to inspire partners in other countries.

The South African Haemophilia Foundation (SAHF), for instance, confronted with the shortage of facemasks, had proactively asked for support to initiate the production of cloth masks and face shields for its community members and for healthcare providers in South Africa. An insert was placed with each mask for the recipient to take a picture and post via social media with hashtags #Haemophilia, #Get+involved, #Covid-19, #SocialDistance, #WashHands.

The SAFH have also supported patients with travel, as most are no longer earning an income and travel is expensive, especially those traveling from more rural areas beyond city limits. We have volunteers calling our community. Once we put in place transport to hospital, the next issue was hunger. We use our volunteers to facilitate the food distribution to these communities where we could not arrange government assistance. It is really challenging, and we try our best…” shared Bradley Rayner, president of the patient organisation and NNHF partner.

The lockdown had serious consequences for many families and individuals as it prevented them from working and having an income to buy goods of primary necessity, as reported by NNHF partners.

The NNHF, with endorsement from its Council and an additional donation from Novo Nordisk, has been able to share better practices and to support its partners requests to implement preventive measures amid the outbreak of the virus. Thanks to this donation, partners can locally produce or distribute personal protective equipment, such as facemasks and/or hygiene kits, which may help protect people with bleeding disorders, healthcare professionals and family members from the virus. In some cases, NNHF funds were exceptionally allocated to purchase basic food supplies.

This exceptional support has brought hope to some people in need.

“As the result of COVID-19 we have a number of haemophilia families that are suffering financially who have lost their jobs or are at home for more than 50 days without any income.Your donation helped to put a smile on the faces of our haemophilia communities as this donation will help to sustain them in this difficult period.”
Christopher Davis from South Africa

Disruption in care delivery

The urgency to minimise the damage of the COVID-19 pandemic and prepare to provide care to a potential growing number of patients with severe symptoms, led to the reallocation of the scarce medical resources in many countries.

Dr Novie Chozie reported the situation from the hospital where she works: “In our paediatric haematology-oncology division in Jakarta, 3 staffs were suspected and one of them was confirmed positive with COVID-19. Now, staff older than 60 years are not allowed to work in the hospital during the pandemic. Furthermore, some are allocated to COVID-19 support, so we witness an extreme shortage of healthcare professionals.”

While in some countries people with haemophilia were still able to access proper care, in others the lockdown or curfews imposed to the entire population have resulted in challenging times for many communities.

The lockdown has made the needed journey of a person with haemophilia to the hospital become a challenge.

“The care delivery has been severely affected due to the lockdown. All forms of transport were banned and the patients cannot access health facilities, unless with written approval from the relevant authorities, the offices of such people are also distant from the communities,” shared Agnes Kisakye, Haemophilia Foundation of Uganda

Furthermore, in some cases, the cancellation of international flights resulted in a shortage of haemophilia treatment, especially for those countries relying on international donations schemes.

Initiatives to address mental distress

The COVID-19 pandemic had also major consequences on the person’s well-being, as people were confronted with a time of great uncertainty about their future and were, in most of the countries, confined at home. Several NNHF partners have witnessed cases of mental distress for people with haemophilia and their families.

In some countries, like Colombia and India, NNHF partners organised webinars or video sessions involving psychologists to provide support to members of the haemophilia community and their families, in order to prevent or address mental or emotional distress.  

Changes in the healthcare agenda threaten years of haemophilia advocacy work

Worldwide the response to the pandemic has been set as a key priority. Therefore, the healthcare agenda has focused mainly on COVID-19 preparedness, awareness, response and treatment. This led to de-prioritisation of the response in other disease areas, such as haemophilia and other bleeding disorders.

Several partners shared their concern about the consequences of such a de-prioritisation, as the efforts they made in the past years to advocate for better haemophilia care could vanish.

Megan Buckie Adediran, president of the Haemophilia Foundation of Nigeria, is among those who raised their concern and shared: “Past experiences with Ebola showed us that once there is a challenge affecting a larger number of the society, the government pushes the issue of bleeding disorders to the background and it looks like starting again. However, we hope we will be able to overcome it this time and continue from where we stopped.”

NNHF will support its partners to ensure haemophilia is not put to the background.

A flow of great solidarity

Times of great challenges bring also great opportunities. Numerous NNHF partners found innovative ways to support the haemophilia community in their country, using for instance technology to provide support and alternatives to continue improving haemophilia care during the period of lockdown.

“This pandemic offered the opportunity to improve our communication at a distance and realize that we were able to grow,” shares Tania Maria Onzi Pietrobelli, president of the Brazilian Federation of Haemophilia (Federação Brasileira de Hemofilia).

Most of all, the coronavirus pandemic has opened the gate to a flow of great solidarity, demonstrating how committed people can mobilise incredible resources to provide relief and precious support to people in need.

In some countries, home treatment became a reality because of the COVID-19 virus, as stated by Rajesh Neelayya, President of Haemophilia Association of Mauritius: “This was in process well before COVID-19 but the procedures were accelerated with the pandemic. Patients are being followed and guided during their home therapy via WhatsApp video and a home treatment booklet is being translated in the local language (creole) to facilitate the comprehension of patients during home treatment.”

Continuously sharing and supporting

In the short term, NNHF was able to provide immediate relief, but will continue discussing with its partners on how to mitigate the impact in the mid- and long-term.

This unprecedented pandemic will probably bring new challenges as the situation is constantly evolving. We, at the NNHF, will continue monitoring, sharing and adapting, in order to continue impacting care. Together.

Big thank you to all healthcare professionals, patient organisations and individuals, who have supported the bleeding disorders community during the COVID-19 pandemic.