The Story of an Innovator

Professor Ulla Hedner, long-time pioneer of haemophilia treatment, has always been striving for better care for those affected by bleeding disorders. In the 1970s she was dismayed by the limited scope of treatment, hampered by limited understanding and progress; “I thought, why can’t we find something better?”¹

 


Published 10 June 2019 | 3 min read
 


Then, an injection on 23 April 1981 changed everything.1 Professor Hedner was researching clotting Factor VIIa in 1981 when she came across 12-year-old Johann. Johann lives with haemophilia with inhibitors, which made finding the right treatment even more challenging. Every baby tooth he lost was landing him in hospital with blood loss — back then, losing baby teeth or a bad stumble could be life-threatening.¹,²

On 23rd April 1981, an injection changed everything

But Professor Hedner had a brainwave; she purified a small amount of clotting Factor VIIa and, on hearing Johann was about to lose another tooth, took the train to his local hospital. “It’s working!” Johann’s mother cried out. Professor Hedner notes, “Johann was the proof of concept. I gave it to him twice, and he formed a clot.”¹,²

Professor Ulla Hedner in fron of bookcase with many books

 
Professor Hedner’s revolutionary work helped to realise the potential of Factor VIIa

The outlook for many people living with haemophilia around the world today has since improved. Professor Ulla Hedner has always been striving for better haemophilia care, and in 1983 she joined Novo Nordisk. “I was pushed by the patients. I saw them every week in pain and I was reminded of the need for something better.” In fact, Professor Hedner’s revolutionary work helped to realise the potential of Factor VIIa and identified a new mechanism in haemostasis (also known as the stopping the flow of blood).⁶

 

Meet Ulla Hedner who is a pioneer in haemophilia treatment. Learn about her journey to improve the lives of people with haemophilia.

Back in the day

When Heinz was diagnosed with severe haemophilia A at 14 months in the 1950s, his parents struggled with the lack of understanding and support for his condition.⁴ His parents were told Heinz’s life expectancy would be no more than 20 years old, which was typical of the time. Heinz recalls, “There was no treatment at all; if you had a joint bleed, you were stuck to bed for weeks, occasionally for months.”⁴

Challenges continued as Heinz grew older and went to school, leaving him feeling isolated. “I missed school for long periods. I was separated from the rest of the class in many social activities, because the risk of getting injured just was too high.”⁴

 

Heinz tells his story of living his life with Haemophilia and sharing insights of how the Haemophilia care changed in the last 60 years.

Treatment challenges and moving forward

However, Heinz recognises that haemophilia care has changed dramatically. Now 62, he reflects that “looking back at six decades of haemophilia treatment, the care has changed enormously.”⁴ The treatment of life-threatening bleeds is a serious challenge, and it has certainly not been an easy journey. In the 1970s clotting factors were produced by purifying blood donated by hundreds of people without necessary safety checks. Devastating consequences followed, including otherwise healthy people living with haemophilia being exposed to contaminated blood in the donation system.¹,²

Fortunately, science has moved beyond using human plasma for clotting factors. Professor Hedner’s opinion was that “I can never trust plasma again after that”,¹ and so she began pioneering work on a recombinant version of Factor VIIa, created in the laboratory instead.¹,³ Nowadays recombinant products are the standard in treatment, providing effective treatment and prevention of bleeding for people living with haemophilia.⁵


References

  1. In the blood — haemophilia. PR Monitor News release. Available at: 
    http://www.prmonitor.co.za/read_story.php?st=72 [Accessed May 2019].
  2. Siegel-Itzkovich J. J Post 2014. Available at:
    https://www.jpost.com/Health-and-Science/She-stanched-the-bleeding-349920 [Accessed May 2019].
  3. Kisiel W. J Thromb Haemost 2009; 7: 1053‒1056.
  4. Inspiring Change in Haemophilia: Heinz. Novo Nordisk Changing Haemophilia. Available at: https://video.novonordisk.com/video/49635758/inspiring-change-in-haemophilia [Accessed May 2019].
  5. The Haemophilia Society. Understanding Haemophilia 2017. Available at: 
    https://haemophilia.org.uk/wp-content/uploads/2017/04/Understanding_haemophilia_WEB.pdf [Accessed May 2019].