“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.