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World Haemophilia Day - moving forward with optimism and resilience

Optimism and resilience in unpredictable times have characterised much of the last year and a half, as the global medical community has been brought together in the fight against COVID-19. For the general public, however, the global pandemic has required us to be cautious, patient and to keep going in tough times. And yet, for those living with haemophilia, these qualities are not restricted to a pandemic, they are very much part of what it means to live with this disease from birth. 

April 17th marks World Haemophilia Day. It is a milestone date for those living with haemophilia and their carers. It should be a timely reminder of the global community that embraces them and their condition – a day that celebrates their resilience. World Haemophilia Day must also be used as an opportunity to educate and raise awareness of this rare condition that, in the case of haemophilia A, affects 1 in 5,000 men and, in the case of haemophilia  B, 1 in 30,000 men. 

Haemophilia A: low amounts of clotting factor VIII: 1 in 5,000 men. Haemophilia B: low amounts of clotting factor IX: 1 in 30,000 men

Understanding haemophilia

The condition itself can seem mysterious to those not directly affected. Understanding the basic facts can be difficult enough, but is complicated further by misinformation and half-truths – online as well as offline.

So what exactly is haemophilia? Haemophilia is a genetic blood disorder that predominantly affects men, but can affect women in smaller numbers. Put simply, the blood does not clot properly in people with haemophilia, leading to mild or severe internal or external bleedings. There are two types of haemophilia – type A and type B. People with haemophilia A do not have enough of a clotting factor called factor XIII (factor eight), whereas those with haemophilia B do not have enough factor IX (factor nine). 

89% of people with  haemophilia live in the  developing world. Most haemophilia patients are men. Woman carry and pass on the haemophilia gene.

The severity of haemophilia can be categorised into three levels: mild, moderate and severe. Those living with mild haemophilia might not show any symptoms until they get a severe bleed. A moderate condition means that the person may bruise more easily and experience internal bleeding around joint areas, leading to severe joint pain when left untreated. And in the most severe cases, bleeding can occur not only following injury but also for no apparent reason from or in the nose, gums, joints or muscles. Of all haemophilia cases, around 60% are severe, 15% are moderate and 25% are mild. 

Mild: 15%. Moderate: 25%. Severe: 60%

While these factors may suggest that living a full and healthy life would not be possible for many, the opposite is true. Even though there is much still to be developed, global advancements in our understanding of the disease have helped improve care options, both holistic and medical, empowering the global haemophilia community to live life to the full.

A positive outlook for haemophilia awareness

A deeper understanding of haemophilia is needed not just within our immediate community and towards the advancement of treatment but also in a broader context. Yes, it is a rare disease, but one which needs to be globally recognised in order to empower those living with it, and in doing so, help support the continued efforts to improve their care. Education within the medical field, which can then be passed down to the general public, provides the most significant opportunity for empathetic understanding and acceptance. Michael Frei, living with haemophilia A, has a hopeful outlook for younger generations living with haemophilia. "When I was younger, first of all, they did not even know why I had these bruises on my body. But nowadays they know, and they diagnose young babies. I am extremely glad for the young generation.”

The good news, as Michael can attest, is that there has been significant progress over the last decades, which has directly contributed to the lives of so many. But maintaining awareness and continuing to build on those communities must be a long-term focus.

Advancements in haemophilia patient care

The level of care, both holistic and medical, has changed enormously over recent decades. We have good reason to be optimistic that innovation will continue to improve and enrich the lives of those living with haemophilia in the future. World Haemophilia Day is a fitting opportunity for us to reflect on that journey and remind ourselves how far we have come. 

Heinz lives with severe haemophilia A. When he was born, his life expectancy was no more than 20 years. Now in his late 60s, and living a full and healthy life in Switzerland, he provides real-life context to the medical advancements he has witnessed over the last six decades. "I remember when I went in 1980 for 18 months to the US, I had [...] the Swiss Red Cross ship me 27kg [...] of coagulation factor, and nowadays you have these small injection devices". For Heinz, medication is just one part of a more extensive set of tools that allow him to remain independent for longer. 

Independence is perhaps something that those not affected by this disease take for granted, but for people like Heinz, innovations big and small are significant. Smaller injection devices mean that he can travel more freely with an increased feeling of security. Similarly, a mobility scooter extends his range of movement around the city. No innovation is taken for granted, as each advancement provides a greater sense of freedom. 

Empowering stories such as Heinz' are vital in shedding light on this disease, helping to educate and generate awareness. Another great way to do that is by hosting a Takeover on social media. On April 17, that's exactly what will happen. We’ll leave Rosie – a carer of a haemophilia patient – in charge of our Instagram, enabling her to share stories about haemophilia care, patient life, opportunities and thoughts about everything in between.

The role of global innovation + medical communities

Doctors are doubling their efforts to improve the living conditions of those affected by haemophilia around the world.  Dr Johnny Mahlangu is a world-renowned researcher and haemophilia treater based in South Africa. He has witnessed first hand to what extent research and innovation have made a difference to patients' lives, both in terms of how they experience the disease and how it can now be treated. "In the new therapeutic armamentarium, the patients have got a better quality of life in general...and in many cases [...] have a reduced burden of both the disease [...] and its treatment."

As part of an effort to highlight some of the exciting developments in the field of haemophilia treatment, Novo Nordisk will be hosting a live discussion on LinkedIn  on April 20th. The following questions and topics will be explored:

  • How has patient care evolved?
  • What to expect from innovation and digitalisation in the future?
  • How can we make life even easier for patients?
  • Unmet needs & individualised treatments: How do we see this
  • changing over the next few years?
  • COVID-19

Novo Nordisk and the advancement of care

We at Novo Nordisk are inspired by the resilience, determination and optimism that patients demonstrate in their everyday lives living with this disease. Our aim is to reflect these qualities with the advancement of innovative treatment worldwide. We know that the path to success is not straightforward – roughly 80% of people with haemophilia live in the developing world, where diagnosis and access to adequate care is still a challenge for many. But our commitment to the improvement of care, both medical and holistic, is resolute. 

In other words, we are committed to offering support and empowerment, and helping people grow. We will do so

  • by sharing valuable information
  • by building awareness-raising campaigns on relevant issues
  • and by facilitating contact between organisations and people affected by haemophilia.
Picture of the haemophilia app on a mobile phone

Novo Nordisk’s commitment to haemophilia beyond products

Aware of the disparities in access to haemophilia care in low- and middle-income countries, Novo Nordisk founded the Novo Nordisk Haemophilia Foundation (NNHF) in 2005. 

Together with project partners in the countries who drive real change, local community members who provide hands-on support, global experts and disease area specialists who share their knowledge, the NNHF is impacting care to achieve its vision: All people with haemophilia and allied bleeding disorders receive adequate care and treatment wherever they live. 

World Haemophilia Day provides a great opportunity to share knowledge, raise awareness to reduce stigmatisation and continue impacting the life of many people with haemophilia around the world. 

If you want to be part of the change and contribute to impacting care in India, visit Donate for haemophilia today.