SSF 5-Year Breakthrough Goal:
4 Year Update
SSF Shows Decrease in in Diagnosis Time for 3rd Year in a row!
Four years ago Steven Taylor, the Sjögren’s Syndrome Foundation (SSF) CEO, said, “It will take an army to achieve our 5-year Breakthrough Goal, but just imagine if we all band together – how we could change the face of Sjögren’s for all patients, present and future!”
And in 2015, that army of volunteers started to make incredible strides in areas of awareness, education and research! Our volunteers continue to fight for all those who suffer from this debilitating disease.
From the release of the first-ever Sjögren’s Clinical Practice Guidelines for the treatment and management of Sjögren’s patients to the increase of clinical trials for Sjögren’s and the number of awareness events held around the country, our volunteers, donors and corporate partners have helped us make momentous strides in three key areas:
• Increasing public and professional awareness
• Increasing involvement from our friends and partners
• Increasing education and awareness among healthcare professionals
Although our work is far from done, the SSF has seen our years of hard work and perseverance finally paying off! We are proud of our accomplishments and want to share some of them with you!
Increasing public and professional awareness
It is hard to believe that four years have past since the SSF announced the launch of our 5-Year Breakthrough Goal. Our Goal:
“To shorten the time to diagnose Sjögren’s by 50% in five years!”
After another great year of increasing awareness, the SSF once again worked with a marketing research company to conduct our annual survey of newly diagnosed patients. The SSF is proud to announce that through this survey, it has been determined that it currently takes an average 3.5 years to receive an accurate diagnosis!
That is the third year since announcing our Goal that we have seen a decrease in the time it takes to diagnose Sjögren’s and we couldn’t be more excited!
When we launched our Goal, research showed that Sjögren’s patients searched for over five years to receive an accurate diagnosis - an amount of time that the SSF Board of Directors and our medical professionals felt was way too long, which is why they set our Goal to decrease that time to under 2.5 years by the end of 2017!
The Foundation knows that all patients will benefit from shortening the diagnosed time because as physicians begin seeing more patients in their practices, they will be forced to become more knowledgeable about the different manifestations of Sjögren’s and the treatment options available. This will in turn mean that ALL patients – newly diagnosed and those diagnosed many years ago – will all benefit from this increased interest, knowledge and education among healthcare professionals!
As patients also know, Sjögren’s can often be overlooked or misdiagnosed because symptoms can manifest in various ways and the disease can affect every body system. This is why the SSF works diligently at educating all specialties within the medical community, while also raising awareness in the general public to encourage those suffering from symptoms to be their own health advocate by knowing Sjögren’s!
To help increase awareness, the SSF Awareness Ambassadors have been on the front lines by helping distribute Sjögren’s educational information throughout their local communities. In 2015, 517 volunteers stepped up to be a part of this program and donate their time. Last year’s campaigns focused on helping to education two specific medical fields:
- • Rheumatology
- • Primary Care Providers
With the help of our Ambassadors, over 30,000 Sjögren’s brochures have been distributed to medical professionals this past year! As our Ambassadors are currently re-committing to be apart of the program in 2016, the SSF would like to thank everyone who participated in our past campaigns and if you would like serve as an Ambassador in the upcoming year, we encourage you to visit our website at www.sjogrens.org to sign up and learn more.
The Foundation also uses our online presence and social media outlets to reach out to the masses by making it easy to access and share. The SSF blog, Conquering Sjögren’s was launched simultaneously with our Goal as a way for both diagnosed and undiagnosed patients to learn about the various manifestations of the disease. This blog alone has over 3,500 subscribers and over 1,200,000 views! If you are not already a subscriber, you can view our blog by visiting www.sjogrens.org.
Increasing involvement from our friends and partners
This is one of the most critical aspects to achieving our Goal because the involvement from our friends and partners helps strengthen our voice!
The SSF strongly values our partnerships with other autoimmune disease organizations, especially those that regularly coincide with Sjögren’s. Currently, the SSF is represented on over 10 coalitions (including: Consumer Healthcare Products Association; National Coalition of Autoimmune Patient Groups, National Health Council, American College of Rheumatology’s Access to Accessible Treatment) to advocate and ensure Sjögren’s patients are represented in the healthcare debate. This presence has helped change the way Sjögren’s is viewed within the healthcare policy community, on Capitol Hill as well as among our elected officials.
As you have seen in past issues of The Moisture Seekers, we continually ask everyone to become involved with the SSF to help us spread the word by participating in awareness events and other activities. Our Sjögren’s Walkabouts, Sip for Sjögren’s, Team Sjögren’s Marathon Races, Team Sjögren’s Goes Turkey, and Bold Blue Day programs allow patients to connect in a casual and fun environment that increase both general awareness in their communities and raise funds. By working together with the many volunteers and participants in each community, our events alone raised over $500,000 to support the SSF’s scientific initiatives, research and patient programs! If you have ever thought about getting involved in one of our events or programs, make 2016 the year you connect with the Foundation!
Increasing education and awareness among healthcare professionals
A comprehensive understating of Sjögren’s by healthcare professionals is one of the most vital aspects of both the SSF’s mission and overall strategy to achieving our Goal. The Foundation continues to work on increasing our visibility at healthcare professional conferences to promoted SSF initiatives, programs and distributed materials to help practitioners understand both the severity of the disease and how best to treat patients.
As many of you know, the SSF has been developing CPG recommendations for medical practitioners in three categories: rheumatology, oral medicine/dentistry and eye care providers. These guidelines will help standardize patient care by giving physicians a roadmap of how to treat and manage their Sjögren’s patients. Currently, over 200 medical professionals are donating their time by serving on an SSF committee to make these guidelines a reality!
In 2015, the SSF released and published the first-ever CPG for Sjögren’s Ocular Management. These guidelines give physicians a treatment algorithm of how to treat their dry eye Sjögren’s patients! And our first set of oral guidelines, focused on Sjögren’s dental decay preventative care, will be published in early 2016.
As for rheumatology guidelines, work continues on 16 systemic manifestation guidelines, which will each be published as they are finished and peer reviewed. The first three of that were submitted in late 2015 for peer review with hopes to be published in mid-2016. The SSF first chose to tackle: Fatigue and Sjögren’s, Inflammatory Musculoskeletal Pain, and Use of Biologics in Treatment of Sjögren’s. And now our work now continue on the remaining 13 topic areas that include such items as lymphoma, internal organ involvement and neuropathies.
In conjunction with Clinical Guidelines Initiative, the SSF has also been actively working to grow the SSF clinical trials consortium (CTC), which encourages the availability of more therapies for Sjögren’s.
Currently there are over 16 compounds/ molecules currently under review for clinical trials in Sjögren’s. The SSF is working alongside each of the companies that have a compound/molecule to help them understand Sjögren’s, our patient community and encourage them to develop a treatment for our disease, which could lead to the first systemic treatment for Sjögren’s.
To help these companies along with the U. S. Food and Drug Administration understand what patients are suffering from and what they want a treatment for – the SSF will be reaching out to you to ensure your voice is heard!
In the upcoming months, the Foundation will be surveying all SSF patient members about their numerous complications and the burden of their illness on their quality of life in order to share the results with our pharmaceutical partners, as well as the U. S. Food and Drug Administration. We are doing all of this in an effort to convince them that a therapy for Sjögren’s is needed NOW!
The dream of making Sjögren’s a household name is in our grasp but we still need your help. We need your support by volunteering, donating and continuing to spread the word about Sjögren’s. We encourage you to look for opportunities in this and future issues of The Moisture Seeker’s newsletter for ways to connect with the SSF. Patients deserve a better treatment option and a shorter diagnosis time- the time is now to make this happen!
It will take an army, but by talking with one person at a time, one community at a time, one physician at a time and one company at a time – we will reach our goal and transform the future of Sjögren’s!
(Article from The Moisture Seekers January 2016, SSF Members can use this link to log-in and read the full Issue)
By Steven Taylor, SSF CEO, and Elizabeth Trocchio, SSF Director of Marketing