Issue link: https://maltatoday.uberflip.com/i/1399957
12 maltatoday | SUNDAY • 8 AUGUST 2021 OPINION TWO weeks ago, I penned an article providing the backdrop to the reforms which PBS an- nounced last Friday, showcas- ing its renewed impetus for the future – hallmarked by a new bi-channel offering with the birth of TVM news+. As it edges closer to its 60th anniversary, change is palpable at the PBS. What was unveiled during the rejuvenation launch at the MCC was the vision for an expansion of service for PBS to become a fully-fledged pub- lic service media, as opposed to only retaining its traditional broadcasting role; with an aim to consolidate the PBS brand with- out the boundaries of the phys- ical medium, via multi-platform content: accessible whenever, wherever and by whoever. This ministry has pushed to provide PBS with even more re- sources to reach the widest pos- sible audience including online. This will be a strong, multi-an- nual package to PBS that will see its budget allocation reach €30 million over five years. The change we want to see is one based on inclusion, access, quality and creativity. This can only be achieved however if the foundations of the company are continuously strengthened and the internal organisation opti- mised, while preserving and de- fending the company's editorial integrity. This can only be done by consulting with under-served groupings amongst our audienc- es. This is what we have been do- ing over this last year and a half. The results will be evident as early as the next programming schedules. I am also of the opinion that PBS should set the standard in enhancing respect for our moth- er tongue, not by ostracising audiences but by showcasing its beauty and providing it with the needed visibility and dyna- mism to help Maltese thrive in the future. We also aim to pro- vide PBS with the right tools and platforms to hone the skills and aptitudes of the broadcasters of tomorrow. I encourage marketing firms and creatives to engage with PBS in the competition which is on- going for a search of the most representative logo that is to symbolize PBS for the years to come. Change however is not just about positivity and aesthetical and technical improvements. Change can be hard. These changes at PBS come at a time when the journalistic profession is under the lens of the wider society. As Minister responsible for Public Broad- casting, I have also noted the recommendation of the Daph- ne Caruana Galizia Inquiry and I will do all I can to help in the implementation of the needed improvements towards enable- ment and protection of the jour- nalistic profession. Our democracy needs a better valuation of journalists, it needs to strengthen the support that is made available to them whilst I believe that we as politicians need to treat them with more respect and see in them not the name of the newsroom they rep- resent but the voice of a wider audience. On the other hand, I am positive that a journalistic conduct based on ethics, dou- ble-checking and staying away from irrelevant personal vitriol – would garner more public trust. We might be on the cusp of a new era for local broadcasting and journalism. An era that pro- vides more valid opportunities to those youths who aspire to take on the broadcaster's career, be it for its creative streak or for its journalistic democratic con- tribution. Let's all do our part to bring about the change we need. AT this very moment, across Eu- rope there are 30 million people living with a rare disease. Each patient is currently facing their own unique challenge, trying to learn to live with and in oth- er cases beat a disease that most people have probably never even heard off. Often, it is difficult to even learn that you have such a disease because no specific test exists. Thankfully there has been great progress made thanks to scientif- ic advances and efforts at various levels. Yet we are still facing a situation where too many peo- ple living with a rare disease face unmet needs and difficulties in accessing a diagnosis, treatments and care, often leaving them mar- ginalised in society. If we take Myalgic Encephalo- mielitis /Chronic Fatigue Syn- drome, better known as ME or CFS, as one such case, it is easi- er to understand the difficulties that such patients live with. Liv- ing with ME can be very difficult and sometimes almost impossi- ble. Extreme tiredness and oth- er physical symptoms can make carrying out everyday activities extremely difficult and is also likely to affect a patient's mental health. Unfortunately, due to the gaps in research, this disease is poor- ly understood by many doctors, and that is why many patients are incorrectly diagnosed and poor- ly treated. At the Committee on Petitions, we received several pe- titions raising concerns over the absence of treatment and the cur- rent underfunding of biomedical research on ME within the EU. For the past year I have been stressing with the European Commission the need for ad- ditional funding and prioritise calls for proposals focusing on biomedical research into ME that aim to develop a diagnostic test and effective treatments to cure or alleviate the effects of the dis- ease. I have also asked about pos- sible EU's actions regarding the cooperation and the exchange of best practices among the Mem- ber States to screening methods, diagnoses and treatments. This is a situation which will be very familiar to other pa- tients who suffer from other ra- re diseases. Rare 2030 Action is a campaign by EURORDIS which is a non-governmental patient-driven alliance of patient organisations representing 970 rare disease organisations in 74 countries. It seeks to ensure that no rare disease patients are left behind by 2030. This European Action Plan fo- cuses on 3 key goals to improve the lives of those suffering from such diseases. The Action Plan seeks to stop people losing their lives too young from rare diseas- es which unfortunately happens very frequently. Only 6% of these diseases have a treatment and it may take up to 5 years to be di- agnosed. The aim is to have 1000 new therapies by 2030 and a diag- nosis within 6 months. The second aim looks to im- prove the quality of life of people living with a rare disease by en- suring that the EU has rare dis- ease strategies which are up to date and in line with the latest ad- vancements in science and tech- nology. The final goal is to ensure that Europe is a global leader in rare disease innovation by unit- ing all European efforts together and setting ambitious objectives for the next ten years. As a society, we can only em- pathise with what suffering rare disease patients go through every day. Not knowing how long you have been ill for before diagnosis and knowing that the probabil- ity is that there is no treatment or cure for your disease. Patients with ME and other rare diseases need us to be on their side. It is only by committing to such initi- atives such as the Rare 2030 Ac- tion that we can in practice offer our full support and solidarity to these patients. A new era for public broadcasting Taking action now for patients with rare diseases Alex Agius Saliba is a Labour MEP (S&D) Carmelo Abela Carmelo Abela is minister within the Office of the Prime Minister Alex Agius Saliba