Dragon Claw is a website (www.dragon-claw.org) and operation designed to provide community and support for Rheumatoid Disease, Lupus and Juvenile Arthritis sufferers and their care givers. We seek to empower the inflammatory disease community, advocate for positive change and shift the way medical professionals manage people with a chronic disease.
In Australia we have 3.3 million sufferers of general arthritis of which 450,000 are people with rheumatoid disease (including 5,000 children), which is the worst form of arthritis involving a life-long painful chronic condition associated with very serious health consequences.
Many members of our community are dependent upon very sophisticated and expensive medications called biologics. These drugs can, for example, make the difference between being in a wheel chair and walking. Many governments around the world are seeking to replace biologics with a new type of drug called biosimilars. While this may be a reasonable proposition, Dragon Claw wanted to strongly put our members’ position and raise a number of concerns.
Rheumatoid disease and Lupus for moderate-to-severe sufferers brings on a great deal of stress, anxiety and depression. It is important not to unnecessarily exacerbate the situation by causing confusion or increased stress. Moving from a successful biologic to an unfamiliar biosimilar can be stressful for the individual involved. Education and detailed support from their clinician is essential. Involving the patient in the process and not relegating them to the status of ‘just a consumer’ will assist to alleviate anxiety.
In all we have made seven recommendations of which the most important is to allow the patient to “switch back” to the original biologic should the biosimilar not provide adequate cover for their condition.
See our paper: Parliamentary Inquiry into Chronic Disease Prevention and Management in Primary Health Care, (number 183), DC Submission