Finding the right diagnosis is only the first step in a rare disease patient’s journey. And for patients ultimately diagnosed with a condition like IgG4-related disease, or IgG4-RD, identifying accessible treatment options is often an uphill battle.
Raising awareness about conditions like IgG4-RD is one of the rare community’s priorities. To improve awareness and help patients and providers better understand the disease, the Alliance for Patient Access released a “Fast Facts” covering the basics of IgG4-RD, entitled “Understanding IgG4-RD.”
Rare Disease, Common Barriers
IgG4-RD is one of more than 7,000 rare diseases. It’s a rare and chronic autoimmune disease that was discovered only recently and is often associated with type 1 autoimmune pancreatitis. While there aren’t any approved treatments specifically for IgG4-RD, clinicians can still care for patients through a variety of existing treatment options. And new treatment options are coming.
The “Fast Facts” highlights that IgG4-RD patients may face extensive barriers to care, many of which are all too common for rare disease patients. Finding a treatment path that works and actually getting access to those treatments can be challenging, especially when insurers don’t know anything about the rare condition.
And given IgG4-RD’s recent discovery, there are many clinical trials underway as researchers try to understand the disease and how it can be treated. Many IgG4-RD patients don’t know about these trials, though, or are unable to access them.
With Awareness Comes Advocacy
The “Fast Facts” coincides with the Alliance for Patient Access’ announcement of an advocacy and education initiative dedicated to IgG4-RD. The initiative will convene rare disease clinicians who care for IgG4-RD patients to identify common challenges and potential solutions. Current barriers to care, unmet patient needs and opportunities to ensure access will be top priorities.
Learn more about the disease and the experience of patients living with it in “Understanding IgG4-RD.”