EHA 2014: Generics in haematology, young people in old people’s diseases, access to medicines, fair pricing: Key concerns of patients and clinicians tackled in the EHA Advocacy Track 2014
A stiffer regulatory environment for clinical research, heavy cost pressure on healthcare systems, as well as the advent of the Internet are changing the dynamics between healthcare providers, patients, policy makers and their healthcare system. Complementing the scientific programme of the European Hematology Association (EHA) Congress 2014, EHA has put patients at the centre by again offering a full-day Advocacy Track. It tackled sensitive issues like generics in haematology, young patients with old people’s diseases, as well as access to medicines and fair pricing. The sessions on 13 June 2014, supported by the CML Advocates Network and Thalassaemia International Foundation, were very popular not only for hematologists, but also nurses, researchers and patient advocates attended the various sessions.
Generics in Haematology: The doctors’ and patients’ perspective
The first of the two EHA Patient Advocacy Sessions organized by the patient community addressed the issue of “Generics in Haematology: The doctors’ and patients’ perspective”. Generics are of increasing relevance in haematology in a growing number of countries and indications where EMA-approved generics or imported, locally approved drugs are being introduced. This session was co-chaired by Jan Geissler, CML Advocates Network, and Androulla Vassilou, Thalassaemia International Foundation.
Prof. Atholl Johnston, clinical pharmacologist at the Barts and The London School of Medicine and Dentistry, UK, addressed the issue of drug quality in generics, substandard drugs and copy drugs, illustrated with historic examples where challenges were observed. He concluded with recommendations for physicians when switching from branded to generic medications, taking into account economics, compliance issues, close monitoring and communication issues.
Dr Mehregan Hadipour from Iran eluded on the differences between myths and facts about generic drugs, and the specific concerns of patients in less developed countries on drug quality and regulatory standards. He reminded NGOs and patients’ organizations of their duty to lobby their governments to ensure constant quality of treatments and collection post-marketing data on efficacy, potency and side effects.
Šarūnas Narbutas, President of the Lithuanian Cancer Patient Coalition (POLA), provided the patients’ perspective. Over the past year, the patient community has collected unique data on generic forms of current targeted drugs, with more generic forms of targeted cancer drugs becoming available in the EU. He illustrated this with the example of generic imatinib being available across some Eastern EU countries already today, demonstrating a wide spread of pricing between countries. The patient community is concerned about the lack of data on comparable quality of life, efficacy and change in clinical practice. ŠarūnasNarbutas underlined this with the CML Advocates Network’s public “Call for Quality and Consistency when Considering Generics” and their “CML Generics Resource Center”, both aiming to increase transparency of information and reducing the potential risks to patients.
What generics mean to clinical practice was illustrated by Dr. Ivana Urosevic, haematologist of the School of Medicine, University of Novi Sad, Serbia. After explaining the clinical case reports so far published on generic imatinib, she explained the practical experience with CML patients switched from branded to generic forms of the drug at her hematology center after generics introduction in Serbia in July 2012. Due to the remaining uncertainties, she suggested careful follow-up of patients after switching drugs and a continuous collection of clinical data.
The challenges of young patients with old people’s disease
(See also: Webstreams)
Many haematological diseases mostly occur in the third trimester of life. However there are many young patients that need to live with these diseases. The second EHA Patient Advocacy Session, chaired by Giora Sharf and Androulla Vassiliou, focused on the specific challenges of young patients with old people's diseases, given expectations on life-span, quality of life, making a living and family planning may be very different for young patients.
Dr Michael Michael from the Thalassaemia International Federation, Greece, gave an introduction into the topic by providing the perspective of young patients with chronic rare anaemias. He explained the frustrations and the problems while in the long process of getting diagnosed as a young patients with an old people’s disease. After the diagnose he could understood his fragileness and limitations. The continuing developments in treatment of his condition made him realize that he is lucky and has grown older than expected and even has been able to create a family.
Mairéad Ní Chonghaile from the St. James’s Hospital Dublin, Ireland, then addressed the issue of sexuality, self-esteem, fertility and family planning in haematological diseases, and how to tackle these issues in terms of counselling patients, providing up to date information, and supporting healthcare professionals to address the needs of young patients.
EHA/ASH Joint Symposium: Access to medicines and fair pricing: The cost of innovative drugs
(See also: Webstreams)
The lack of transparency in drug pricing has raised many eyebrows in the past and in the face of all-round major healthcare budget cuts the issue is becoming more and more pertinent.
The EHA-ASH Joint Symposium touched upon the highly controversial issue of pricing of innovative medicines. Richard Bergström, Director General of the European Federation of Pharmaceutical Industries and Associations (EFPIA), and Jean-Luc Harousseau, President of the Haute Autorité de Santé, France, exchanged their views on the cost of innovative drugs, the costs of research and development, the value of innovation, and the challenges faced by healthcare systems to balance patients’ access and budgets. From the debate that followed is was clear that the controversy surrounding the pricing of drugs will remain a point of attention and concern, mainly due to the fact that the current policy on pricing drugs will be unaffordable in the future, as one of the participants in the debate concluded.
What do you mean, he can’t have the treatment? An interactive session for haematologists and patients
Inequalities exist across the EU and between patient characteristics, so certain therapies might be available depending on region, age of the patient or healthcare coverage. Patients from older age-groups may be both less well informed and more reluctant to challenge treatment decisions taken by clinicians, while the clinicians themselves may operate a conscious or unconscious policy to restrict the treatment options offered to the elderly. This may be a consequence of an awareness that resources are not unlimited and some element of rationing may be applied.
The greatly increased availability of information about new and effective treatment on the internet increasingly means that even if older patients themselves are not well informed, other family members may be well placed to act as their advocates. In this role play session, a live debate on the non-availability of certain, potentially more effective treatments embarked between the clinician and the spouse of a patient. The issues of eligibility that affect older patients may be further affected by attitudes of both clinicians and patients.
The Future of Hematological Research in Europe
(See also: Webstreams)
In the last session of EHA’s Advocacy Track, EHA addressed the important issue of the future of hematologic research in Europe. EHA is currently initiating the creation of a Research Roadmap for Blood Disorders in Europe. The “Roadmap for Research in Hematology in Europe” was presented by Prof. Andreas Engert, University Clinic of Cologne, Germany, and chair of the EHA Research Roadmap Workgroup, followed by a “Perspective from Personalized Medicine” presented by Marc Lawler of the European Alliance for Personalised Medicine (EAPM). A “Perspective from Horizon 2020” was given by Hele Everaus, University of Tartu, and Member of the Horizon 2020 Advisory Group for health, demographic change and wellbeing for DG Research, Estonia. This was complemented by the patients’ perspective, provided by Karen van Rassel of the Lymphoma Coalition.