ELPA participated in Multi‐stakeholder Consensus on Core Outcomes for Decision Making About Nonalcoholic Steatohepatitis Treatment

ELPA participated in Multi‐stakeholder Consensus on Core Outcomes for Decision Making About Nonalcoholic Steatohepatitis Treatment

A multi‐stakeholder group from North America and Europe was invited to participate in the research with the Delfi method, and participants were categorized into patients/patient advocates, clinicians/researchers, U.S. payers, health technology assessors, industry representatives, or regulators. Participating patients and patient advocates represented a variety of levels of NAFLD disease severity. ELPA was represented by president Marko Korenjak. The research lasted several months and produces very important and interesting results. Outcomes of the research can contribute to decision making for regulatory, market access, and on‐market decision making. Including the core NASH COS in clinical development programs will facilitate improved comparisons and help decision-makers assess the value of new products.

 

https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep4.1678

The Israeli National Programme for Hepatitis C elimination, nothing without liver patients’ organizations

The Israeli National Programme for Hepatitis C elimination,
nothing without liver patients' organization

Patients have the right to know, and the system must let them know. With these words, Mr. Burman started the conversation with ELPA.

On the occasion of the launch of the Israeli National Programme for Hepatitis C elimination on February 17, 2021, ELPA reached Mr. Julio Burman, ELPA Vice-President and leader of the ELPA Working Group on clinical trials. Yet today, Mr. Burman is, above all, a key player, together with the association Hetz (the Israeli Association For The Health Of the Liver – ELPA Member) in the adoption of the Programme.

ELPA: So, finally, Israel has a National Programme dedicated to Hepatitis C elimination. How long has its adoption taken?

Julio: It has taken exactly 21 years. It was 2000, the association was just founded, and we went to the Ministry of Health to ask for patients screening. Since then, it has been long and continuous fighting to achieve the realization of a national plan. We proceeded step by step, overcoming an obstacle after another. Every year I thought about a new and a different way to tackle the issue. I have never given up; I have been fighting against every Ministry of Health; I have been literally shouting how important this Programme is for 21 years.

E: What was your role and the role of Hetz?

J: The first answer we received was: “Why the health system should offer screenings if basically there is no treatment.”However, my driving idea is that patients have the right to know no matter there is a treatment available or not. I make you an example. If you have Hepatitis C without symptoms and so without knowing to have the disease, you can continue drinking alcohol, worsening the condition. However, if you know to be sick, maybe you can be treated and save your life. This applies to all of the diseases. When I started bringing this concept to all the meetings, even in the Parliament, I noticed that it was evidently unassailable, even by the most prominent doctors and politicians. I understood that this topic was worthwhile to be pushed forward.

During the last few years, after Israel had signed the agreement with the WHO regarding Hepatitis elimination by 2030, many other arguments came up against the Programme,especially related to the cost of treatment and screening. As you can imagine, I was told there was not enough money but, with the association, we discovered that there was money allocated for Hepatitis C, but it was used for something else.We proved that and we went public with that piece of information.

E: More generally speaking, how can liver patients’ organizations advocate for the same in their respective countries?

J: I want to tell all the patients’ associations, not only those related to liver disease, that the key to success is perseveranceand persistence. They should also keep in mind that they are patients’ organizations. They are free to spoke without restriction and free to bring to the table all patients’ needs. Then I would like to stress out that I could not have been done all of this alone. During all these years, I got on board hepatologists, politicians and various stakeholders. However, they are not, of course, as free to talk and to make noise around a topic as NGOs. Patients’ organizations have to consider that this is an advantage for them. They have to think of themselves as a unique voice between all of the involved parties and as a bridge between all of them. This is a position of enormous strength. The most critical aspect is building a coalition. That was precisely the purpose of ELPA@HomeHepatitis when I implement that some years ago.

E: In a practical way, of what does the Programme consist? Which will the following steps be?

J: The Programme considers 4 risk groups in Israel: Russian migrants, people who inject drugs, people who received a blood transfusion in the ’90s, prisoners. These people have to go and be tested. Each of the 4 Israeli Sick Founds, linked to the citizens’ insurances, call the people who belong to these risk groups.

However, regarding the implementation, I got a big budget for it from donors. I plan to reach people from these risk groups and tell them not to wait for the Government to call them for the screening but engage themselves and ask to be tested. We can do that by investing massively in communication. I strongly believe Hepatitis Day should be every day. It is not the first time someone tells me: “Julio, I am so sick of you and your advertisements everywhere that I am going to be tested.”

Another idea I have regarding the implementation is to push the sick funds to compete between them in terms of quality measurements. I want to tickle their business nature and see which one will be able to engage more people. This will be a way to push them to reach as many people as possible.

E: In conclusion, I would like you to remind our readers why Hepatitis elimination is a significant public health policy intervention.

J: We know that hepatitis C is a curable disease, and the treatment nowadays is nothing comparable to that from some years ago in terms of effectiveness and side effects. No disease had such a breakthrough during the last years. Millions of people live with Hepatitis C even though the elimination is feasible and can be achieved. I would also add that Hepatitis C is a risk factor for liver cancer. Reducing and eliminating Hepatitis will also reduce the incidence of liver cancer. Whit a Programme like that, people are given the opportunities to get rid of something that can kill them.

ELPA – Liver Cancer Patients’ Summit

ELPA - Liver Cancer Patients' Summit

On February 4, 2021, World Cancer Day, ELPA organized the first Liver Cancer Patients’ Summit. The goal was to raise awareness about liver cancer and multidisciplinary team, focusing on information for and from patients.

After a video introduction where Dr. Tomislav Sokol, Member of the European Parliament – Group of the European People’s Party (EPP) and Member of the EP Special Committee on Beating Cancer (BECA) endorsed the event, ELPA President Marko Korenjak presented the first speaker.

Prof. Bruno Sangro, Director of the Liver Unit, Clínica Universidad de Navarra, Spain and President of ILCA (International Liver Cancer Association), in a very easy-to-understand way, gave an overview of the present and future biomarkers for screening strategy in liver cancer.

After Prof. Sangro’s presentation Dr. Teresa Casanovas, Leader of ELPA Scientific Committee, informed the audience regarding the activities and objectives of the ELPA Working Group on Primary Liver Cancer in 2021.

This first part dedicated to the scientific field was followed by two presentations by two patients’ association representatives. Ms. Zorana Maravić, acting CEO of Digestive Cancers Europe (DiCE), showed what liver cancer represents for her organization. Then, Mr. Marco Greco, President of the European Patients’ Forum (EPF), after introducing the EPF’s engagement at the patients’ side, analysed some aspects of the brand new EU Beating Cancer Plan.

Coming back to the medical field, Prof. Manuel Romero Gómez, Director of the Gastroenterology Service, Hospital Universitario Virgen del Rocío, Sevilla, Spain, explained the attendees the relation between MAFLD and HCC as MAFLD is a risk factor for the development of different types of solid cancers.

After a short coffee break, the webinar hosted three patients’ advocates who showed different aspects of the Summit’s topic. Ms. Lone McColaugh, President of Leverforeningen, Denmark, presented the benefits for patients of primary care centres, a good practice from Denmark. Ms. Sindee Weinbaum, Leader of ELPA working group on Rare Liver Diseases, shared with the audience two testimonial videos stressing the patients’ journey of Cholangiocarcinoma diagnosis in Israel. Mr. Joan Ribas, Board member of AMTHC (Associació de malalts I trasplantats hepàtics de Catalunya), closed this session with a presentation on detected priorities of patients and families on the waiting list for liver transplant during COVID. He stressed challenges and opportunities.

The floor was given back to Dr. Teresa Casanovas, who introduced the guest speaker, Dr. Isabelle Soerjomataram, Deputy Head, Cancer Surveillance Branch, International Agency for Research on Cancer. Through precise data and charts, Dr. Soerjomataram showed the burden of Liver Cancer in Europe, also making some predictions regarding its incidence in the future.

A statement by Dr. Nicole Seguy, Unit lead HIV, Hepatitis and STI, WHO Europe, wrapped up the meeting. She emphasized how eliminating viral hepatitis is an effective way to prevent liver cancer.

The Summit was just the first event ELPA will dedicate to Liver Cancer in 2021.

‘We should fight WITH the patients and not FOR the patients,’ goodbye Emilia

‘We should fight WITH the patients and not FOR the patients,’ goodbye Emilia

Today ELPA has lost one of its most passionate friends, Emilia Rodrigues. She was the President of SOS HepatitesPortugal, ELPA member since 2005; she was also of ELPA Supervisory Committee and later an ELPA Advisor to the ELPA Board. In addition, Emilia collaborated with the most well-known experts in the field of Hepatitis eradication in Europe and beyond.

However, despite the titles, she was, above all, a committed liver disease patients advocate and a patient herself. She put all her energy into her fight with liver disease. She was always cheery, the best supporter and colleague ever.

SOS Hepatites Portugal, one of the most active association of support for Hepatitis patients in Portugal, is an association made up of people affected by the Hepatitis virus. It arose from a need to share experiences, strengths and hope to createa space where patients with viral hepatitis and their families would find a way to help each other concerning common problems arising from the disease and in a way to improve their quality of life.

Emilia ran the association with the intent to raise awareness around this disease but also to end the marginalization, discrimination, and prejudices these patients are still experiencing. Her tireless commitment and her expertise made Portugal one of the leading countries in Europe and in the World regarding Hepatitis elimination.

ELPA will miss her enormously, and it is close to her families and friends in this sad moment.

ELPA will never forget her motto: We should fight WITH the patients and not FOR the patients,and it will continue to strive for a world without liver disease.