This section is dedicated to updates on access to lymphoma drugs in Europe, as well as to studies and initiatives that help better understand or improve the access to safe, efficient and supportive lymphoma care in Europe.
The European Cancer Information System is a Europe-wide incidence, mortality and survival database, including historical data and estimates for 2018. The ECIS database is easy to use and search, with the information capable of being downloaded in clear graphs and reports that LCE member organisations may wish to use to support their lobbying, advocacy and research work. Read more here.
Country Access News
Bulgarian Lymphoma Association: Patient advocacy matters
Last December, following protests from patients’ organizations, the Bulgarian parliament made a U-turn on its own decision to halt public funding for innovative medicines for cancer and other rare diseases, which would have left thousands of patients without access to treatment.
The controversial moratorium on public funding for innovative drugs, which would have frozen treatments’ funding for one year, was proposed by Health Minister. It intended to plug a hole through which public funds on healthcare are allegedly misspent. If left in place, the moratorium would have affected 32 innovative medicines for cancer, asthma, arthritis, multiple sclerosis, etc., potentially needed by 8,600 patients and estimated to cost some 40 million leva.
Bulgarian Lymphoma Association was actively involved in all the advocacy actions, being also part of the meeting held between the leader of National Patients' Organization, Bulgarian Lymphoma Association’s lawyer who’s also in the board of the Health Insurance institute, the Prime Minister and the Minister of Health. Several important topics were discussed - things that patient representatives tried to change for years, proposing improvements and different ways of action, but were never heard by now. We feel very proud of the advocacy work done by the Bulgarian Lymphoma Association, to defend the interest of patients, their constitutional rights and the social justice.
France Lymphoma Espoir
France Lymphoma Espoir currently participates in the evaluation of Ledaga (chormethine), approved by the EMA in December 2016 for the treatment of mycosis fungoides-type cutaneous T-cell lymphoma.
Country Funding Systems
On 31 May the Belgian Health Care Knowledge Center published a very informative report on the Belgian process for Managed Entry Agreements (MEA), which analyses both the Belgian and the European experience. MEA are alternative funding mechanisms aimed at enabling early access to pharmaceuticals, whose (cost-)effectiveness is still unknown or for which the budget impact is expected to be very high.
A study published on 27 April 2017 in the Annals of Oncology analyses the value delivered to society by the NHS Cancer Drugs Fund (CDF), which was established in 2010 to reduce delays and improve access to cancer drugs in England.
European Care Cooperation
EuroBloodNet is the European Reference Network (ERN) on rare hematological conditions. It brings together 66 highly specialised hospital centres from 15 EU countries with expertise on malignant and non-malignant blood diseases. LCE works in close cooperation with Pierre Aumont, who represents patients with Lymphoid malignancies in the network governance system. On 22 June Prof. Pierre Fenaux, EuroBloodNet Coordinator, will present the Network to the patient organisations participating in EHA 2017 Congress in Madrid.
On 15 May, the European Commission published the results of the online consultation on “Strengthening of the EU cooperation on Health Technology Assessment (HTA)”. Most patient organisations expressed their preference for a common clinical and economical evaluation of health technologies (full joint HTA). Based on the results of this consultation, the European Commission is now expected to present a legislative proposal on the future of EU cooperation on HTA.