SS patients know well the difficulty of obtaining a diagnosis. The symptoms of SS are often ascribed to other maladies, side effects, or natural aging. The diversity of symptoms means that many doctors, dentists, optometrists, and specialists see only part of the picture, and poor communication keeps them from assembling the pieces. Doctors are often misinformed about the disease, and blood work for as many as a third of patients is negative. As a result, diagnosis times in 2012 averaged six years. As a result, the Sjogren’s Syndrome Foundation announced a goal in 2012 to reduce that diagnosis time by half. Earlier this year, they announced that they had reached a goal:
When the Sjögren’s Syndrome Foundation (SSF) first launched our goal, the average time it took for a patient to be accurately diagnosed with Sjögren’s, from the time they started seeking a diagnosis, was nearly six years. This was something we all agreed was too long, and meant that to achieve our Goal we would need to shorten the diagnosis time to less than three years.
Now, in this final SSF 5-Year Breakthrough Goal update, the Foundation is honored and excited to announce that we have not only reached our Goal but have surpassed it, by reporting that the average diagnosis time is currently 2.8 years!
When we first embarked on our Goal, we understood that changing the diagnosis time was an ambitious initiative and one that we might not succeed at, but we also knew it was an important initiative to help the millions of patients who were suffering from the symptoms and not yet diagnosed with the disease. We believed that our Goal would transform the disease because as physicians start seeing more Sjögren’s patients in their practices, they would need to become more knowledgeable of the disease’s different manifestations and the treatment options available.
This initiative focused heavily on educating relevant medical practitioners for whom SS may have been a page in their (often outdated) textbook and a few questions on a test in medical school. Tens of thousands of brochures were distributed to medical offices across the country, and hundreds of volunteers worked as ambassadors to educate medical practitioners. The SS Foundation has also developed and distributed a number of Clinical Practice Guidelines to educate specialists in the fields of dentistry, ophthalmology, and rheumatology. They are to be commended for the considerable work that has been done by their small staff and volunteers, especially when you consider their relatively small budget relative to many other disease nonprofits.
During the first 8 months of my own quest for a diagnosis, I saw many different specialists, but none were willing to label my disease as Sjogren’s Syndrome, even when I raised the possibility based on my own research. If even one of my medical specialists had understood the complexity of SS, I could have saved considerable time and money and realized a diagnosis much sooner. For many patients now facing the same struggle, a diagnosis means piece of mind in knowing what they face, and access to limited treatments.
Unfortunately, as we patients well know, treatments for Sjogren’s Syndrome are very limited. There are no products approved for the systemic manifestations of SS, and off-label treatments like Plaquenil/hydroxychloroquine, Methotrexate, and Rituxan/rituximab have shown limited efficacy. One might question the value of a faster SS diagnosis, especially to those that have been diagnosed for years.
There is, however, a very clear benefit from this campaign for all SS patients. We all want to see better treatments, and the structure of our worldwide healthcare systems mean that pharmaceutical corporations are the gatekeepers who can unlock future treatments that will let us leave the dryness, pain, and fatigue that plagues us behind. These companies are driven by their shareholders, and shareholders want to see a return on their investment. The misguided perception that SS is a rare disease that can be countered with eye drops and water does not inspire investors to spend hundreds of millions of dollars to develop new treatments that they fear will have a limited reach. However, knowing that SS is a widespread disease that has a significant negative impact on the quality of life for patients means millions of patients who would happily pay (or fight their insurance companies) to have better treatments. That is the kind of patient profile that will move pharmaceutical companies to invest in SS treatments, and it can only happen if the doctors and statisticians who advise them understand the scope of the problem.
As a result, SS patients everywhere should be applauding this latest achievement. Not only does this education campaign mean that patients will face less misery during a protracted quest for a diagnosis, but it means that Sjogren’s Syndrome will inch closer to becoming a household name. As more people, particularly doctors, recognize the breadth and depth of the disease, there will be additional resources invested in finding better treatments. In fact, a look at the clinical trial pipeline today shows considerably more trials for Sjogren’s Syndrome than I saw five years ago. A better-educated medical establishment with better visibility into SS patients means more investment in treatments, and that should get every SS patient excited. Hopefully in the not-too-distant-future, we will see TV commercials for a blockbuster drug to treat SS, and we won’t have to answer as many of our friends, family, and acquaintances asking “What’s Sjogren’s Syndrome?”