The Alpha-1 community has formed an unprecedented alliance to campaign for better access to treatment for Alpha-1 patients. The recently established Alpha-1 Alliance will be campaigning for a nationally commissioned specialised service for Alpha-1 and for more awareness of the unmet medical need of Alpha-1 patients.
The Alpha-1 Alliance brings together the key patient groups for Alpha-1 in the UK, including the Alpha-1 UK Support Group, Alpha-1 Awareness UK and Alpha-1 Advocacy & Action. The Chair of the Alliance will be Dr Ravi Mahadeva, Clinical Director in Respiratory Medicine at Addenbrookes Hospital, who will be representing the Alpha-1 clinical community.
The Alliance will offer a platform for patients and clinicians to work and campaign together. Dr Mahadeva said: “For a long time patients, families and carers have been waiting for better access to Alpha-1 therapy. We therefore strongly support the campaign for a nationally commissioned specialised service for Alpha-1, as it will allow for a more holistic treatment approach and provide the necessary infrastructure for future research in the disease area.”
As an initial part of the campaign, the Alliance will be meeting with key stakeholders to discuss the application process for a nationally commissioned specialised service and to raise the profile of Alpha-1 in Parliament. The Alpha-1 Alliance will provide regular updates to inform patients of the progress of the campaign and how they can get involved and support the activities.
Dawn Heywood-Jones, Trustee of Alpha-1 Awareness UK and member of the Alpha-1 Alliance, said: “We are pleased that the Alpha-1 community has finally joined forces to campaign for the common goal of better access to Alpha-1 treatment. It is of great importance that we speak with one voice to make our concerns and medical needs heard in the public policy arena. A nationally commissioned specialised service will not only provide better therapy for patients but will also end the current postcode lottery in access to treatment.”
Karen North, Project Co-ordinator at the Alpha-1 UK Support Group and member of the Alpha-1 Alliance, said: “The policy structure for the commissioning of specialised services is currently in a state of flux. However, we look forward to engaging with the Government to discuss a common approach for improving services for Alpha-1 patients in the future.”
Margaret Millar, representative of Alpha-1 Advocacy & Action and member of the Alpha-1 Alliance, said: “We appreciate both other patient groups for all their hard work over the years and are happy to be part of this historic momentous occasion working together in an Alliance for better treatment and therapy for all Alpha-1 patients in the UK today.”