European Haemophilia Consortium (EHC): 2010-02-23 Round table

EHC Roundtable of Stakeholders - 23 February

Ageing and Haemophilia - How to address the economic and medical challenges of ageing with haemophilia and support the patients?

Brussels, 23 February 2010, 09.00am-12.30pm
Radisson Blu EU Hotel, Rue d'Idalie 35, 1050 Brussels

The debate focused on the growing population of ageing haemophilia patients, and the associated risk of co-morbidities. Stakeholders stressed that until the last decade, there was a minority of ageing patients, mainly due to the lack of early treatment and comprehensive care. As Haemophila patients live longer, they present a range of new medical, economic and social challenges which need to be thoroughly addressed across the EU.

The debate also focused on the impact of health-related Quality of Life (QoL) on elderly patients Participants highlighted that ageing haemophilia patients greatest concerns are losing their autonomy, coupled with persistent chronic pain.

The Round Table also addressed the issue of the cost of care for ageing patients with Haemophilia was Indeed, the management of cardio-vascular diseases and cancer represent new challenges for these ageing patients who are also often affected by disabling arthropathy, long-lasting HIV infection, or liver disease. These age-related co-morbidities have an enormous economic impact on the cost of care. This means there is an urgent need to identify adequate and viable strategies to guarantee healthy ageing for Haemophilia patients.

The Round Table was also the occasion to debate the broader economic and fiscal consequences of ageing, looking at trends in the demography of Europe and the impact of ageing on national public spending in health.

Finally the Round Table gave the opportunity to National Members to present progress and challenges of haemophilia care for ageing patients in their respective countries. NMOs representatives stressed that the dialogue and social support seems to become a key aspect in ensuring well being of haemophilia patients through their advanced years.

Consensus arose on the need for more social support to ageing patients with Haemophila, making sure they are not isolated, and giving them the opportunity to maintain a good quality of life. Echoing the Round Table exchange, the EHC called for:

An enhanced multidisciplinary care approach with a comprehensive group of specialists available for ageing Haemophilia patients
Enhanced social integration of ageing patients, including networking social groups for patients, and the promotion of physical activity
Robust strategies to ensure cost-effective treatment for ageing patients and to guaranty healthy ageing
Increased information on access to physiotherapy and other services which contribute to the wellbeing of patients
Adequate care that includes chronic pain management which today dominates ageing Haemophilia patientâ??s concerns

Please see the Round Table documents: