The Malta Independent 18 June 2024, Tuesday
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European Liver Patient Association urges people to get screened for ‘invisible’ liver disease

Semira Abbas Shalan Sunday, 19 November 2023, 08:30 Last update: about 8 months ago

The European Liver Patient Association (ELPA) has urged people to get screened for potential liver disease, the symptoms of which are non-existent, and only emerging when the disease is at a very late stage.

The Malta Independent on Sunday spoke to ELPA president Marko Korenjak, whose work is focused on patient advocacy at the highest European level and is connected to changing the landscape of liver patients’ care.

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In ELPA, Korenjak also leads a team that collaborates on 19 Horizon 2020 and Horizon Europe projects, representing over €150m spent in high-level liver research among more than 180 collaborating partners in the European Union.

Korenjak said that ELPA is the largest liver patient association in the European Union. It was established by patients suffering from liver complications, and is also run by patients. "Everyone on our governing board and those connected to us is from the patient community," Korenjak said.

He said that ELPA usually does meetings only with European countries, which are part of their network, and in the last 18 years, the association has not conducted meetings with other non-member countries.

Malta is an exception, Korenjak said, after learning about Gertrude Buttigieg, describing her as a “role model”. Korenjak was very impressed with her organisation skills and her ability to organise and give a voice to the voluntary sector in Malta.

Buttigieg, also the chairperson of the Malta Health Network (MHN), believes that every patient is important and should not be left alone.

The MHN is hosting ELPA and all patient representatives in Malta over the next few days, where they are meeting to discuss different aspects concerning the liver, such as the medicine available and its side effects, and to try to get people involved and interested.

Korenjak mentioned innovative treatment. "Malta is a very small society, so sometimes it is very difficult to obtain new medicine and treatment," Korenjak pointed out.

He said that it is very important for Malta to tell the EU that Malta needs to gain access to innovative treatment and to new medicine, which is out there, but is often unavailable in smaller countries.

Korenjak mentioned patient organisation and noted that Malta has no specialised Liver Patient Association.

"It would be feasible to set up patient organisations in the next few years, that would incorporate liver patients, as liver is very connected to a healthy lifestyle," Korenjak said, adding that anything one drinks or eats will affect the liver, and that the European Union strives to promote a healthy lifestyle as well as promotes how to choose healthy food.

On this, he noted that there is also a big problem with regards to education in schools, on promoting how to choose healthy foods, rather than the easy, quick foods, which are often unhealthier and processed, which are not good for the liver.

Korenjak said often times, problematic liver diagnoses were usually seen in people who are aged 50 and over, and in children, liver complications were often noted in obese children.

"One trend we have seen is that now we are seeing more problems in children, such as diabetes and obesity, and we anticipate that in the next 30 years, these children will be the people who will have problems with their liver, but they will not be 50 years or older, they are going to experience them in their 30s," Korenjak said, adding that the required budget from the healthcare system will have to considerably increase to address this.

Korenjak mentioned another problem seen across all countries, which is that the budget that goes into preventive treatment is "very small, and very low."

He said that the liver is the only organ in the human body which can revive and re-build itself, if given the proper care and treatment.

"With stress, and bad food, we are not letting this organ rebuild itself," Korenjak said.

"Within the landscape of people getting diagnosed for different diseases, in liver, we see that there is so much one can do prior to getting to a point of no return," he added.

Korenjak said that the ELPA is deeply involved in work carried out by the European Medicine Agency and the European Centre for Disease Control, besides working very closely with the European Parliament as well as the EU Commission. ELPA was also involved in the European Commission’s Beating Cancer Plan, where the NGO changed the wording of some aspects, deeming it "very strange for an NGO to do".

This proves to NGOs, no matter how small, that they do have a say and a voice to try to change the current landscape, Korenjak said.

He said that one can have all the money and success they wish, but if they do not have their good health, then all other things do not matter.

Korenjak mentioned a proverb, "a healthy person has a thousand wishes, a sick person, just one", which is to get better.

He pointed out that the world is still in its recovery era after the Covid-19 pandemic, however, due to global matters such as economic problems and wars, the focus of the European Union has slowly shifted to address those topics.

"Prior to this happening, we were trying to build up systems and strategies that would keep the focus on health, regardless of other matters," Korenjak said, adding that associations have developed 10 requests for the new MEPs elected in the MEP elections next year, compiled in a document which was produced by 60 NGOs.

"We are just asking for structural changes of the European Parliament that will allow us to not lose the focus on health," Korenjak said, noting that while there are 20 different permanent committees, there is no permanent committee for health.

The association is thus asking for a Permanent Committee for Health. Korenjak said that while there is a Committee for Public Health, which he said was a great first step, this is not enough.

He said that the association will still ask for the Commission for Health and its commissioner to remain, and suggested that the vice-president of the Commission could take care of a committee for health.

Asked to say how serious and prevalent liver complications in Malta are, Korenjak said there is "bad news" when it comes to early-detection of liver problems and diseases.

"This is not just in Malta, it is for every European country we have gone to, and done screening for early-detection of problems with liver," Korenjak said.

He said that around 25-30% of the population in the European Union has some kind of problem with their liver. Korenjak added that there is a wide range of things one can do once these individuals are identified, to rebuild their liver.

"However, usually the healthcare system does not cater so much for preventing these problems and so we lose track of these people, and when they come back, they come back with more serious problems, such as liver cancer," Korenjak said, adding that treatment for liver cancer is extremely expensive.

Korenjak said that most small countries the association has worked with do not have services for liver transplants, and patients would have to be transported to another country which provides this service.

He said that a recent project done in collaboration with the European Association for Innovation and Technology involved screening 3,600 people for early detection of liver disease, and it was noticed that 25% of these people have some kind of liver problems or are at the starting point of liver disease.

After that, the ELPA developed an even larger project, entitled Liver Screen, which will be the largest liver screening project in the European Union. It will screen 60,000 people for early detection of liver diseases, Korenjak said.

"We are trying to convince Parliament and the Commission that early detection is something that we need to go for, in terms of identifying the people that are at risk of developing further complications," Korenjak said.

Korenjak was asked if the European Union should directly act to have liver transplant services available for all countries, especially small ones.

He noted that when a person is diagnosed with, for example, late stages of liver disease, and they need to have a transplant, it is already hard for them to travel to another country for a transplant.

Additionally, it is extremely expensive for individuals and the healthcare services alike, Korenjak said.

"I am sure that Malta has many high-level surgeons who are able and capable to also do liver transplants," Korenjak added.

Korenjak said that together with the University of Paris, ELPA had developed a programme two years ago, to review the rules and regulations which put one on the list for being a candidate for a liver transplant.

He said that these regulations were drawn up 30 years ago and the ELPA believes that they are outdated, and not reflecting the current times.

"Unfortunately, the project was rejected by the EU Commission, as they usually select three or four projects from a 100 proposed," Korenjak said, adding that however, the association is still working on it.

He said that one interesting thing he has seen is that the European Union has several different associations which manage organ transplants, at least 20 different ones.

Korenjak said that this is the first thing which needs to be tackled, by organising these associations to work together or by having an “umbrella association” to further direct the patient to where they need to go to find help.

"This would be the first step to solve this very common problem in the EU," he said.

Korenjak said that ELPA works closely with a US company, which collects and provides data to the ministries of health, to calculate the risks and budgets.

He said that a spokesperson for the company had delivered a presentation to MEPS in the European Parliament back in 2017, with regards to problems on liver transplants.

The spokesperson had said that due to our lifestyle, he anticipated a 120% increase of demand for livers in the EU in the next 20 years. "This was in 2017," Korenjak reminded.

After the world was plagued by the Covid-19 pandemic, Korenjak said that this problem had worsened, since people were mostly inside with limited movement.

"We are anticipating even more liver problems because of the pandemic," Korenjak said.

With regards to liver cancer, Korenjak said that one thing which is extremely serious within all patients who have some kind of liver disease, especially if they have cirrhosis, which can then lead to cancer, is the fact that there are no symptoms, describing it as an invisible disease.

"When a patient does develop symptoms, such as spider veins and extreme fatigue, they are already at a very late stage," Korenjak said, adding that one does not experience any symptoms otherwise.

He said that people need to go for screenings and check-ups to determine if there is something wrong and then they can do something to remedy it.

Korenjak said that one of ELPA's screenings was deliberately done outside the European Parliament, both to be able to screen parliamentarians, but also to show them how easy it is to screen and check people for liver disease.

"This should be a regular national programme, like we have for colorectal cancer and breast cancer," Korenjak said, adding that it is even more important to have screening programmes for diseases which are not felt and seen.

Korenjak said that it is important to teach people that they should take advantage of free screening programmes for whatever disease.

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