Awareness & Support

KEY INITIATIVE #1

Create an online platform featuring educational information and resources specifically for autoimmune disease

The internet can provide a wealth of information to individuals who are looking for answers to their health concerns, however this information can often be overwhelming and lack scientific evidence or support from the medical community.

The Autoimmune Project aims to bring together all that we know about autoimmune disease and provide an online platform for which individuals with autoimmune disease can turn to find reliable and evidence-based information, as well as the latest updates on new research.

Status: in progress, see The Autoimmune Hub

KEY INITIATIVE #2

Petition for a ‘Rare Disease Law’ to extend access to medications that are currently listed on the PBS for use in rare autoimmune diseases

The Autoimmune Project would like to advocate for treatments which are currently available on the Pharmaceutical Benefits Scheme (PBS) to be made available for use in the treatment of rare autoimmune diseases.

The PBS provides government-funded treatments to patient groups for which there is substantial evidence from clinical trials supporting their efficacy in treating the disease. Under current PBS guidelines, approval for a treatment can only be obtained using large clinical trials conducted within Australia. Given that rare diseases are just that - rare - it is impossible to gain PBS approval for treatments, which may have shown efficacy in small national trials, given Australia’s relatively small population with limited numbers of patients with rare diseases.  

As a result, while some medications are listed under the PBS for use in more common autoimmune diseases such as rheumatoid arthritis, individuals with rare autoimmune diseases unfortunately slip through the cracks. In addition, while these medications may be currently approved for registered or off label use in other countries and jurisdictions for these rare conditions (e.g. FDA approval for use in the US), these medications are often incredibly expensive and prohibitive for most.

The process of obtaining necessary treatment for a rare disease thus causes severely ill patients to suffer unnecessary disease progression, pain, anxiety, stress and financial distress whilst trying to obtain treatment that may, in many cases, save their life. 

Read more about Sara’s personal struggle with obtaining affordable treatment here.

KEY INITIATIVE #3

Advocate for establishment of an autoimmune disease database to help expedite diagnosis and identify treatment options

According to the American Autoimmune Related Diseases Association, it can take a person an average of 5 years and 5 doctors to get diagnosed with an autoimmune disorder.

Unlike cancer, autoimmune diseases do not need to be reported to the U.S Centres for Disease Control and Prevention or the National Institutes of Health. Consequently, there is no database to help medical professionals understand the prevalence of autoimmunity, and thus many people remain medical mysteries while autoimmune diseases go undiagnosed and untreated.

Technology can be a great asset in managing an illness and finding treatment. The development of an online autoimmune disease database would support medical professionals and their patients in finding a timelier diagnosis and treatment regime through providing easy access to case studies worldwide.