Patient association, ‘normal life with Seu is impossible without drug’

2023-05-16 17:07:30

“For 11 years now there has been a turning point. Both the previous drug and this antibody have turned the tide of this disease. I am the father of a 5-month-old girl affected by atypical haemolytic uremic syndrome (HUS) which damages the blood vessel walls of the kidneys and other organs. Ended up on dialysis, we performed 2 transplants, but without drug therapy the possibility of leading a normal life, outside of dialysis, was reduced to a flicker”. This was stated by Paolo Chiandotto, president of the Alice Project patient association, speaking today in Milan during a meeting with the press organized by Alexion, Astrazeneca rare disease on the occasion of the reimbursement obtained from ravulizumab for patients with this rare disease.

“The infusion of plasma or plasmapheresis which took place in the past as therapy in the acute phase – continues Chiandotto – had a very low percentage of efficacy. My daughter and countless other people are off dialysis just because of these drugs. There is no comparison between being on dialysis 3 times a week and having an infusion every 2 weeks, every 4 and now, with the new drug, every 8 weeks. Going to the hospital less – recalls the president of Progetto Alice – means being less psychologically linked to the hospital, less costs for journeys borne by families, especially for those who are far from the reference centre, with a clear improvement in the quality of life, but also for the blood vessels for the infusion, which are under less stress”.

There are two different types of people with atypical Seu. Those who were affected before or after the arrival of these drugs. “Those who have been affected before – recalls Chiandotto – ended up on dialysis in most cases, if not all, due to the ineffectiveness of the therapies and need important psychological support. The people who are affected now – he continues – must have an adjustment phase and need psychological support at the moment, but they no longer think in the absence of therapy and with an unfortunate diagnosis. On the contrary, they speak of a path of care. However, the aspect of supporting families remains fundamental, especially in the delicate moment of diagnosis”.

There is a change of perspective. “If diagnosed in time and treated correctly – explains Chiandotto – a person has a normal life, that’s a fact. An infusion every 8 weeks, compared to dialysis 3 times a week, should be considered a return to normal life. There are worse diseases. The quality of life is excellent, people can continue to work. You don’t count the social value of these pathologies, the days lost at work and at school, all things that are clearly improving”.

The association, present on the web and social networks, “is an important point of reference not only for directing hospitals where the pathology is treated – recalls the president of Alice Project – but also for psychological support because it is an acute disease, which suddenly and strikes within hours. Psychological support for families is also important. However, we try to support and also provide medical support through our knowledge to ensure that people are treated as quickly as possible”, concludes Chiandotto.