Since 2017, the Hellenic Cystic Fibrosis Association has launched the “Breath Unlimited” awareness campaign, which includes public awareness actions for the disease, as well as advocacy and support actions for patients with Cystic Fibrosis and their caregivers.
Awareness-raising actions
During the World Cystic Fibrosis Day, the Association organizes awareness activities aimed at informing the public about the disease.
Enabling early access to revolutionary treatment that "freezes" the disease
In October 2019, the innovative treatment Kaftrio (Trikafta in the US) was approved in the US to “freeze” the disease, which affects 90% of Cystic Fibrosis patients worldwide. From the first moment of the approval of the treatment in America and until the approval of the treatment in Europe, the Hellenic Cystic Fibrosis Association made continuous interventions and actions trying to mobilize the institutions and society. The aim of the actions was to activate the programme of early access to treatment in the context of “palliative care” for Cystic Fibrosis patients in end-stage respiratory failure and at risk of losing their lives. Enabling an early access programme is an ethical practice whereby a pharmaceutical company provides a free pre-marketing drug to critically ill patients if no other treatment is available.
With continuous actions and pressure from the Association in collaboration with the pharmaceutical company, the country’s governmental mechanisms and the Ministry of Health, in April 2020, the early access to revolutionary treatment programme was launched in Greece, saving the lives of 30 critically ill Greek patients. After the Association’s interventions, any bureaucratic delays were resolved and the first patients started to receive the treatment at the beginning of August 2020, noticing from the very first days of the treatment spectacular results in their respiratory function. As part of its actions, the Association created a video spot on the necessity of patients’ access to treatment, while the whole of society supported the Association’s struggle, as well as the journalistic community that highlighted the issue.
The pivotal role played by the Hellenic Cystic Fibrosis Association for the activation of the early access program was recognized with the award of the pharmaceutical “Nobel” prize PRIX GALIEN GREECE 2021. Following the approval of the treatment by the European Medicines Agency (EMA), the Association continued its actions to ensure timely and equitable access for all eligible Greek patients. In January 2023, negotiations on the compensation price between the Greek state and the pharmaceutical company were completed and a compensation agreement was signed for the innovative treatments that “freeze” the disease for Greek patients. Today, all eligible patients in Greece receive the treatment, managing to regain their lives and claim “Unlimited Breath”.
Lighting of the Greek Parliament
As part of the “Unlimited Breath” campaign, the Association illuminated the building of the Hellenic Parliament with a double slogan:
“Breath without Borders”
The 1st motto expresses the Association’s collaboration with the European Cystic Fibrosis community and summarises the efforts of CF patients for equal access without borders in Europe to treatments and health services that will empower their breathing and improve their level of care in every European country.
“Unlimited Breath”
The 2nd motto expresses the national effort of Cystic Fibrosis patients in our country on many levels: equal and direct access to innovative treatments, self-management of the disease and improvement of CF units, development of lung transplantation and addressing modern challenges.
Racing team "Unlimited Breath"
Since the advent of innovative treatments, exercise and participation in sports continues to be part of the daily treatment of patients with Cystic Fibrosis, with the aim of improving their respiratory function and their quality of life. The CF Racing Team participates every year in the race of the Authentic Athens Classic Marathon with the new t-shirt of the “Unlimited Breath” Association, aiming to raise public awareness of the daily struggle of patients for unlimited breath.
Interviews with personal stories of patients
Through the campaign, the Association encourages patients and their caregivers to share their personal stories publicly. In this way it continues to highlight the different aspects of the disease and raise public awareness.