The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has released a report today highlighting ‘alarming disparities in the quality of care and treatment’ received by people living with rare autoimmune rheumatic diseases (RAIRDs).
The Resetting the Balance report provides compelling evidence that late diagnosis and inadequate care of these diseases can significantly reduce a person’s life expectancy and have a major impact on their quality of life.
Sue Farrington, Co-Chair of RAIRDA, said: “People living with rare conditions have too often been forgotten when it comes to policy or investment in health services. The Resetting the Balance report presents evidence and clear recommendations for how to improve care and services for people living with RAIRDs across the UK.
“We hope that the next few years will see policy developments that reflect the needs of people living with these serious illnesses, and real breakthroughs in important areas such as improving diagnosis and creating and accessing new treatments. We also hope that the experience of living with a RAIRD is dramatically improved as care and treatment reaches parity with other
more common conditions.
“Finally, we hope this progress happens across the UK, with the treatment a person gets no longer being determined by which nation or region they live in.”
In order to urgently address the care and treatment of people living with these rare conditions, RAIRDA is calling for quicker and more effective processes for diagnosis for people with RAIRDs, better access to treatments – including new and innovative drugs, an elimination in care and treatment inequalities and, due to the vulnerability of RAIRD patients, priority access to vaccines and treatments for Covid-19 and other viruses.
The report has received coverage in The Daily Mirror, Daily Express and Daily Record, as well as Personnel Today.