Today Roche becomes the third company to join the European Haemophilia Consortium’s (EHC) innovative programme: Procurement of Affordable Replacement Therapies – Network of European Stakeholders (PARTNERS). This programme aims to improve access to medicines for haemophilia in European countries that do not meet minimum standards of haemophilia care as set by the Council of Europe .
Brian O’Mahony, EHC President
“We are thrilled to see Roche join the PARTNERS programme. Their participation will mean that less developed countries in Europe will have an opportunity to access novel treatment for people affected by inhibitors in a cost-effective and sustainable manner. Further, we are delighted to see a new corporate partner put its trust in our programme and share our vision of enabling better quality of life for many people currently living below the minimum European standard of treatment.”
The PARTNERS programme brings together multiple stakeholders, including national governments, patient organisations, healthcare professionals and the pharmaceutical industry with the objective to improve standards of care for people living with haemophilia A and haemophilia B. Through PARTNERS, governments will be able to purchase larger quantities of quality treatment without immediate or significant increase in their national haemophilia budget. The PARTNERS programme also requires the formal inclusion of both patient representatives and healthcare professionals in the national procurement process in an effort to make the selection process safer and more cost-effective. Finally, the programme encourages fair and transparent competitive purchasing approaches in each PARTNERS country, enabled by all stakeholders involved in the procurement of haemophilia treatment.
The PARTNERS programme was officially launched in November 2017 during an event at the European Parliament and has gathered the support of a number of Members of the European Parliament (MEPs) as well as other patient organisations such as the European Patients’ Forum (EPF) and EURORDIS – Rare Disease Europe.
Cristin Hubbard, responsible for Haemophilia at Roche
“We are proud to be part of the PARTNERS programme and look forward to collaborating with the EHC on this important initiative. Healthcare systems vary greatly across Europe and we are committed to address local healthcare needs to ensure people with haemophilia A can have access to treatments.”
Throughout the implementation of the PARTNERS programme, the EHC will also promote the creation of a national haemophilia committee, the promulgation of national treatment protocols and provide its support to local stakeholders to further improve access to care. This is in line with the European Principles of Haemophilia Care supported by the European Association for Haemophilia and Allied Disorders (EAHAD), the EHC and the World Federation of Hemophilia (WFH).
About the EHC
The European Haemophilia Consortium (EHC) is an umbrella organisation gathering 45 patients’ groups in Europe active in the area of rare bleeding disorder such as haemophilia, von Willebrand Diseases and other rare bleeding disorders thus representing at least 90,000 individuals affected by these rare, life-threatening and congenital disorders. The EHC’s objective is to improve the quality of life of people living with bleeding disorders.
For more information, visit the EHC’s website or follow us on twitter.
About the PARTNERS programme
The Procurement of Affordable Replacement Therapies – Network of European Stakeholders (PARTNERS) programme is a multi-stakeholder programme stemming from the EHC’s objective to ensure adequate supply of- and access to – safe haemophilia treatment products. Through the PARTNERS programme the EHC wishes to tackle the clear disparities in access to treatment for people with haemophilia by ensuring sustainable levels of treatment in European countries with developed healthcare systems but highly limited budgets.
For more information on the PARTNERS programme, visit the EHC website.
About haemophilia
Haemophilia is a set of rare genetic disorders hindering proper blood clotting. If left untreated, haemophilia results in painful bleeds that will damage joints and soft tissues leading to disability and sometimes death. When treatment and comprehensive healthcare services are available, haemophilia can be properly managed and allow affected individuals to live a normal life.
For further information, please contact:
Amanda Bok
[email protected]
+32 488 305 012
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
