Under the slogan "Stop Hepatitis! Beware of A, B, C and D", the Association of Patients with Liver Diseases in Romania (APAH-RO) held a broad information campaign among the population on the occasion of World Hepatitis Day”

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Under the slogan "Stop Hepatitis! Beware of A, B, C and D", the Association of Patients with Liver Diseases in Romania (APAH-RO) - member of the Alliance of Chronicle Patients in Romania (APCR), the European Liver Patients Association (ELPA) and World Hepatitis Alliance (WHA) – developed, between July 25 -  July 30, a broad information campaign among the population. The campaign was focused on the importance of proper hygiene in preventing transmission of hepatitis viruses, testing and vaccination against the infection with hepatitis A and B.

With occasion of World Hepatitis Day, celebrated worldwide on July 28th, the campaign was a good opportunity to directly discuss with both the patients and the people who don't know that they may be affected by such viruses.

Therefore, in the 13 cities (Brasov, Iasi, Turda - Cluj, Constanta, Giurgiu, Alexandria, Bucharest, Bacau, Sibiu, Suceava, Timis, Craiova and Neamt) APAH-RO developed awareness campaigns. There were distributed over 25,000 leaflets with information about the transmission and the types of analysis that can be performed to detect hepatitis viruses.

Over 100 volunteers from across the country - students, health professionals, patients with liver diseases and other members of Romanian partner organizations - have participated in the campaign carried out in locations intensely circulated.

In order to raise awareness, in four cities - Brasov, Bucharest, Constanta and Turda – there were placed for a few hours, volumetric letters, symbolically representing the viruses A, B, C and D, to support those interested in receiving correct and professional answers to their questions.

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Another specific element of this edition was sharing and ascension in several Romanian locations of over 1,000 blue and white balloons to attract attention towards the hepatitis viruses and think twice about the risks of infection, before undertaking any action (eg tattooing, unprotected sexual act, sharing needles or cutting objects, which facilitate contact with the infected blood, etc).

At the same time, in order to identify the level of awareness among citizens in regards to liver diseases, for a symbolic gift, APAH-RO provided questionnaires to the passers by who stopped for a moment at the campaign stands. Thus, we could find out what the population expects from patients’ organizations. In general, they want more information, moral support and guidance.

"Through our actions we wanted to warn the population about the importance of testing and timely detection of chronic viral hepatitis, and the importance of proper hygiene for preventing the transmission of hepatitis viruses. On the other hand, we wanted to raise awareness of disparities regarding access to the latest therapies among Romanian patients and the rest of the EU. Authorities should speed up the process of updating the lists of offset and not ignore the fact that for hepatitis, especially hepatitis C, we may talk about personalization of the therapy process. Each day that the new molecules are not yet available means lost lives for the Romanian patients and probably the new therapy may come too late for a few people. In addition, the quality of life of these patients is becoming more and more precarious", said Marinela Debu, President of APAH-RO.

All these social impact actions have been possible with the financial support of Janssen, Bristol-Myers Squibb - as golden sponsors, but also Abbvie, MSD, Roche, Bioclinica, Biopredictive.

At the same time, we had local partners: Green Revolution (the handmaid of Culture, Park Herastrau Bucharest), the Mayor of Brasov , Transylvania Express Media Group, Civicum Voluntaris Association, City Park Mall, Science Hall, Palas, Salina Turda, Alis Group, Field public Turda, Aries Water Company, AMD Topography. Turda Municipal Hospital, Turda News, Turda Live, Turda Info, Paper 21, Agora Media, Radio Cluj, Radio Revival, Town Hall Alexandria, Post High School State Sanitary Alexandria, School of Health "Carol Davila" Alexandria, Association of Cancer Patients and Hepatitis (ABCH) Giurgiu, County of Youth and Sports, High Technology "Ion Barbu”, Association of Cancer Patients and Hepatitis (ABCH) Craiova.

Statistics and official statements:

"We are a country with high prevalence of infection with hepatitis viruses"

The messages of the patients and authorities have been heard in a press conference, too, held by Mediafax news agency and APAH-RO, on July 28th, at Hotel Howard Johnson, Platinum room.

According to WHO estimates, about 1.4 million people get sick worldwide, each year,  of hepatitis A, 240 million suffer from hepatitis B and 150 million have contracted hepatitis C.

Worldwide, hepatitis kills each year about 1.4 million people and affects hundreds of thousands of people around the world, and the situation is increasingly worrying, as said Professor Adrian Streinu-Cercel - manager of National Institute of Infectious Diseases "Matei Bals" Bucharest: ,,Hepatitis Virus A, which was calm for years, it is now re-emerging and comes with severe medical market, ie high levels of liver enzymes, 4,000 units compared to normal - 40-50 international units - and associated with a cholestatic component (...). Moreover, when hepatitis virus A comes across a hepatitis virus B and C , it can generate hight forms of hepatitis. Hepatitis A changes its way of interacting with the human body, and these forms are those that require hepatic prosthesis, the so-called artificial liver (...) For C virus we can discuss about innovative treatments which cure the patient. But as nothing is perfect, the patient can be re-infected with hepatitis C virus, and then blame the treatment. The prevalence of hepatitis C is 3.23 percent and can reach up to 5.59 percent, Hepatitis D - 4.4 percent. 20 percent of patients with hepatitis B have infection associated hepatitis D. So we are a country with high prevalence of infection with hepatitis viruses."

In Romania there are estimated to be 10% of the 12 million people in Europe, who allegedly are infected with hepatitis C. Also, Romania is 4th, globally, in terms of deaths caused by hepatitis B and C, and in the EU is number 1 in terms of hepatitis C prevalence. It is alarming that experts predict a peak incidence of hepatitis in 2020 after overlapping obtained from patients infected before 1989 with people newly infected with drug using intravenous, piercing or tattoos.

"I would like to put the diagnosis of hepatitis sooner, because it would lower costs and complications. (...) The transplantation would be ideal. This is doing quite well now, but I think it should be a better correlation between the program and allocations, to not be in the near future at the stage where we can find the body organ but no money. I think that the register of hepatitis which prof. Streinu Cercel will put in motion to involve all actors in the system, to introduce patients as quickly there. If we talk of family medicine we can find a formula to compensate them, to discover how quickly such cases, because such costs are lower. From a fairly fixed amount of budget we can keep more patients, " said Vasile Ciurchea, President of the National Health Insurance (CNAS).

According to the latest report released by the European Liver Patients Association (ELPA), Romania ranks 25 out of 30 European countries in terms of access to treatment in patients with hepatitis and specialized medical services.

There are chances for this situation to be overcome, according to the statement made ​​by the Secretary of State in the Ministry of Health, Dorel Sandesc: "The Ministry of Health has taken some measures, including market identification the unic distributor in Romania for hepatitis B vaccine . Given the urgency, the acquisition was initiated by emergency procedure for 50,000 doses of vaccine, covering a period of two to three months, so that, in parallel to carry out centralized procurement procedure for the remaining 156,000 dose of vaccine."

The President of the National Agency for Medicines and Medical Devices, Marius Savu, said that the assessment criteria for molecules were published and charges are functional: "We can begin evaluating new molecules, as well as existing ones. We evaluated the existing ones that may no longer justify their existence. Technically, I think in August (2014 - n) we will have the first answers and present them to you. We hope this happens soon (...) The current therapy for hepatitis triggered a discussion. We are talking about the clear needs of people who suffer from a severe medical condition, treatments that did not exist in the past and, on the other hand, the tremendous cost that has not existed in the past 20-30 years, which is recognized by the EU. It is the first time when we have a working group to look more closely at the profits made by the pharmaceutical industry. There is nobody who would not want people to have access to the best treatment. I hope to see the results of these discussions, to have funds for research, but the possibility of a social insurance system afford to pay (...) It takes into account the elements of cost-effectiveness. They say a new molecule can't have a negative budgetary impact. I think it can. For example, in Germany a drug that costs 80,000 euro, in Egypt after negotiation it came to cost under USD 10,000."

Dr. Radu Zamfir said at the conference APAH-RO - Mediafax, that although in the past year has greatly increased the number of organ donors, they are still insufficient, their increase is possible through several innovative techniques: "A terminal illness if left untreated, invariably leads to death. In addition to the risk of liver cirrhosis, there is a risk of malignancy, to appear liver cancer overlapped appearance of the disease. This liver cancer can be difficult to treat because putting problems. Some patients with cirrhosis and cancer among receptors pass waiting for a liver transplant. It's a problem that quantifies simply: the mortality on waiting list. There are patients who are on the waiting list for a liver but they can die, because, despite the large increase in the number of donors last year, there is an imbalance between supply and demand. The donors are insufficient."

The press conference held on 28th July by APAH-RO and Mediafax news agency was supported in Bucharest by speakers as:

  • Dorel Sandesc - State Secretary, Ministry of Health
  • Vasile Ciurchea - President of National House of Health Insurance
  • Marius Savu, President of National Agency for Medicines and Medical Devices (ANMDM)
  • Prof. Dr. Adrian Streinu Cercel - National Institute for Infectious Diseases "Prof. Dr. Matei Bals"
  • Radu Zamfir, Specialist Surgeon, General Surgery and Center of Liver Transplantation Fundeni
  • Galia Eremia - APAH-RO Iasi
  • Mioara Baiceanu - Representative APAH-RO Piatra Neamt
  • Gheorghe Ionescu - President of  SANO-HEP
  • Lutmila Cassian - President of Association Sanova from Moldavia

 

Author:
Camelia VLAD
PR APAH-RO

www.hepato.ro