Last weekend the European Haemophilia Consortium (EHC) met in Athens for its seventh New Technologies Workshop.
The workshop is one of several activities developed by the EHC to try to bring more knowledge to its community about innovative treatments. For example, a great place to keep up to date is the EHC’s Novel Treatment Products Newsletter.
This year’s workshop was divided into three parts:
- licensed therapies,
- therapies under development, and
- gene therapy.
The workshop looked at the clinical use of emicizumab in patients with inhibitors as well as when and how to switch patients without inhibitors to emicizumab. Longer-acting replacement therapies, and safety and economic considerations on novel therapies were also discussed. There was also an update on therapies for von Willebrand Disease.
Therapies Under Development
This section focused on anti-TFPI and SerpinPC.
There was an update on the status of the clinical trials, speakers covered potential re-treatment with vector and explored thus-far unanswered questions regarding adeno-associated viruses. Ethical considerations regarding gene therapy in children and how we will be able to afford this novel therapy were also discussed. If you’d like more information then the EHC’s recent video series on gene therapy is very informative.
The workshop also shed light on the ‘hot topics’ within the community.
Long Term Data & Personalised Care
There was a focus on the current lack of long-term data on treatment use with novel therapies. It seems that clinicians, just like patients, are wrapping their head around all of the treatment options that will available and how to assess which treatment will better be suited to which patient. This leads to the conclusion that there will be an even greater need for personalization of care depending on the patient’s family history, life-style and treatment goals.
Maintaining Patient Contact
There was also a discussion about how to maintain links with patients who might feel that they no longer need their treatment centre or patient charities as much. This is a critical consideration for Haemophilia Scotland as we begin the process of reviewing our strategy.
With so many new treatments coming Haemophilia Scotland is looking for members with a particular interest to help us keep abreast of the changes and maybe even attending EHC meetings to help us keep people in Scotland informed. If you’d be interested in volunteering with us please contact Dan Farthing on email@example.com or 07309 779719 and maybe keep the date of the next EHC New Technologies Workshop in your diary; 20 to 22 November 2020.