The Sjögren’s Syndrome Foundation (SSF) is proud to be a member of the National Coalition of Autoimmune Patient Groups (NCAPG) and join with similar organizations to represent the voice of our members and all Sjögren’s patients.
This past Friday, the SSF stepped up to support the American Autoimmune Related Diseases Association (AARDA) and other coalitions that petitioned the Centers for Medicare & Medicaid Services (CMS) proposal to discontinue the inclusion of all immunosuppressants as a required drug category under Medicare Part D formularies.The SSF submitted its own comments as well to the CMS about the proposal.
Today we are happy to announce that the Administration will not finalize at this time ANY of the changes it had proposed to the Six Protected Classes policy in its Part D proposed rule issued in January of this year!
As a nonprofit organization representing the 4 million Americans who suffer from Sjögren’s, the second most common rheumatic/autoimmune disease, the SSF believes it is crucial that access to life-saving and life-altering care not to be impeded in any way.
Because Sjögren’s patients often present as complex cases, with no two patients being exactly alike and tend to have multiple autoimmune disorders that contribute to the complexity of management and treatment, patients and their physicians together need to be free to decide which therapies are best suited for each patient specifically. Though the SSF appreciated the fact that CMS wanted to improve quality and costs for patient care, we believe the best way to do so is to ensure critical access to care and let the protected class status remain for immunosuppressants in Medicare Part D.
The SSF wants to thank all of our members as your support allows us advocate on behalf of all patients! We are excited that our combined efforts paid off and millions of Medicare beneficiaries will continue to have greater health care options and access to their vital medications.
Click Here to view the Medicare Proposed Changes
Click Here to view a copy of the CMS Letter to Senator Kay Hagan on the Proposed Medicare Advantage and Part D Rule
for the 2014 SSF National Patient Conference "Solving the Sjögren’s Puzzle" April 25-26, 2014 at the Hyatt Regency O’Hare, (Rosemont, Illinois).
Congratulations to our winners: Carlie, Evon & Ray!
The winners have all been notified personally by the SSF and thank you all for the support!
Entering is easy!
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2014. The Foundation will privately email the three winners on Tuesday, February 18, 2014. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at email@example.com with any questions.
Presentation Topics Include:
- Overview of Sjögren's Syndrome
- Pulmonary Issues and Sjögren’s
- Dry Eye / Dry Mouth and Sjögren’s
- What is in the Clinical Trial Pipeline?
- Gastrointestinal Issues and Sjögren’s
- Clinical Practice Guidelines Overview
- Nutrition, Wellness and Autoimmune Disease
- Overlapping Major Connective Tissue Diseases
We are delighted to have Mary McDonough as our 2014 Keynote Speaker – you won’t want to miss this informative and moving presentation!
Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands, significantly decreasing the quantity and quality of saliva and tears. The disease was first identified by a Swedish physician, Henrik Sjögren, in 1933.
Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s may cause dysfunction of other organs, affecting the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the nervous system. Patients also have a higher risk of developing lymphoma.
Today, as many as four million Americans are living with this disease. Learn more about Sjögren's and the Sjögren’s Syndrome Foundation in this short video:
Watch Steven Taylor, SSF CEO, talk more about the Foundation and the work being done to fulfill our mission of helping patients cope with their Sjögren's, increase awareness, and support research, in this ten question interview:
The SSF exists only because of its members and supporters.
By adding your voice to the fight against Sjögren’s and becoming a member, you are helping to strengthen our organization. When bound together, these voices help the SSF when we advocate for new treatments, new coverage for health insurance and when talking to companies about supporting the SSF.
With each member, the SSF voice will get stronger and we will finally make Sjögren’s a household name.
Please join with us!
Weather can affect everyone differently, and some people prefer colder temperatures. Although when living with certain chronic illnesses, like Sjögren's, winter weather can have a negative effect on a person's symptoms, such as joint stiffness or dry skin, and also on a person's mood.
Learning to live with Sjögren's is learning what your body's new normal is- this includes taking care of both your physical and emotional symptoms.
Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!
- What cold weather problems do you find the most difficult when managing your Sjögren's and how do you deal with them effectively?
- When the winter blues hit, how do you manage to say positive when also coping with Sjögren's?
- What advice would you give to a fellow patient dealing with the depression?
Just as one tip may work well for one patient but not another, you will need to discover what tips and coping strategies work best for your body. That is why tips and suggestions of all kinds are welcome and encouraged as a way to help fellow Sjögren’s patients.
Please comment below and share with us what you would suggest.
Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s. Here are the Sjögren's Syndrome Foundation's top 5 tips that can help you cope:
- Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days, but don’t overdo it!
- Turn your friends and family into a support system by educating them about what you are going through and how Sjögren’s fatigue can come and go. Then, ask them to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
- Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two-to-three minutes each month up to a maximum of 25 minutes daily. If you have a heart or lung condition, consult your doctor first.
- Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
- Work with your doctor to find a treatment for your fatigue by identifiying a specific cause that may be adding to your symptoms. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.
Share with us below what you’ve found the most helpful when managing your Sjögren’s fatigue.
As with any year-end non-profit donation, the age-old questions still exist - “where do my donations go?” and “what impact will they make?” As CEO of the Sjögren's Syndrome Foundation (SSF), I take great pride in being able to answer those questions by sharing with you the many accomplishments that have been achieved by the SSF thanks to the generosity of our donors.
This year, I am excited that we have, once again, seen amazing progress made in the fight against Sjögren’s. Just this past month, as you may have heard, Oklahoma Medical Research Foundation completed the first genome-wide study of Sjögren’s where six Sjögren’s genes were identified. This is the first-time that potential genes have been connected to Sjögren’s and surely gives hope for future researchers to investigate causes, progressions and treatments at the Sjögren’s genetic level. Most exciting, is that this research was completed by two SSF Research Grantees, Dr. Kathy Moser Sivils and Dr. Christopher Lessard. Their research grants were funded by your generous contributions to the SSF and, once again, show that your donations are having a direct impact on Sjögren’s research and, specifically, this big breakthrough in Sjögren's.
That is why I appeal to you today to renew your support with a generous tax-deductible year-end gift. Your support will allow the SSF to continue funding life-changing Sjögren’s research while also helping to further the SSF’s efforts to better the lives of those living with Sjögren's.
I also am proud to share a few additional milestones achieved this past year thanks to your support. The SSF:
- Awarded six (6) Innovative Research Grants and three (3) Student Fellowships.
- Continued work on the first ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren's by receiving support from the American College of Rheumatology, American Dental Association and American Journal of Ophthalmology to present a draft for endorsement and publication.
- Held our annual National Patient Conference in Bethesda, Maryland with over 450 attendees and presentations from the country’s leading Sjögren's experts.
- Assisted with the Restoring Access to Medication Act (S. 1647), bipartisan legislation, recently introduced to the Senate in November 2013. This work was the continuation of my testifying before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication.
- Increased our awareness efforts by adding 130 Awareness Ambassadors (now 463 nationwide) who volunteer their time to increase Sjögren's awareness in local communities across the United States.
These are just a few of the things we accomplished in 2013 and, as you can see, your donations truly are impacting our efforts and the lives of Sjögren's patients. We are truly grateful to have such dedicated members, volunteers, event participants and donors that serve as the driving force behind all we do. I ask you to consider making a year-end gift so we can continue our efforts for all Sjögren’s patients in 2014 and beyond. Thank you in advance for your support and generosity and I wish you and your family a happy and healthy New Year.
With sincere appreciation,
Chief Executive Officer
We hope you find this collection of SSF Patient Education Sheets helpful.
Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health.
And when finishing your on-line shopping this Holiday season, remember to "Shop for Sjögren's!"
Shopping on-line is now an easy way to contribute to Sjögren's!
The Sjögren's Syndrome Foundation has partnered with on-line retailers who will donate a portion of the value of your purchase to the SSF. This year, purchase all of your holiday gifts, while also giving back to Sjögren's.
Some of our partners include:
Click here to view all our retail partners
The Sjögren’s Syndrome Foundation, SSF, is pleased to announce that the long-awaited over-the-counter (OTC) bill, Restoring Access to Medication Act, is expected to be introduced today in the U.S. Senate by Senators Pat Roberts (R-KS) and Mary Landrieu (D-LA). This is an important piece of legislation to the SSF because Sjögren’s patients largely depend on these medications and products to treat their disease. A similar bill was introduced in the House of Representatives this summer (HR 2835).
The SSF has been working on getting OTC medical expenses covered, once again, in flexible spending arrangements (FSAs) and health saving accounts (HAS) plans so patients do not have to obtain a prescription, which places a significant strain on both patients and their healthcare providers.
In April 2012, Steven Taylor, SSF CEO, testified before the Subcommittee on Oversight of the House Committee on Ways and Means hearing about how the law’s current limitations on OTC medications impacts Sjögren’s patients.
“The cost is untenable for patients and their families, as OTC treatments are not covered by insurance, are not tax deductible and are no longer even covered under Health Saving plans without obtaining a prescription. With so many OTC products needed for treatment, having to go to a physician or dentist for a prescription for each and every one presents an undue burden,” said Taylor.
In June 2012, the U.S. House of Representatives passed the Health Care Cost Act under the Affordable Care Act that included a provision in the legislation repealing limitations on the purchase of OTC medications.
The SSF serves on many coalitions to ensure that Sjögren’s patients are not forgotten in the healthcare debate, which is why we are proud to be a part of the Health Choices Coalition (HCC) supporting this bill’s introduction in the Senate. Contact your Senators to let them know you want them to support the “Restoring Access to Medication Act!” You can find your Senator by going to www.senate.gov.
View Statement from the Health Choices Coalition
View Press Release from the Consumer Healthcare Products Association (CHPA)
Yesterday afternoon, Senators Roberts and Landrieu introduced the Restoring Access to Medication Act (S. 1647) with the following original cosponsors: Senators Heller, Inhofe, Isakson, and Johanns. The Sjögren’s Syndrome Foundation will work with our fellow Health Choices Coalition partners to build momentum for this legislative effort.
Secretary Lew was quoted as saying the announcement "underscores the administration's continuing efforts to provide added flexibility and common sense solutions to how people pay for their health care." We agree that reinstating reimbursement for over-the-counter medicines without a prescription is certainly a common sense solution!
Remember to contact your Senators to let them know you want them to support the “Restoring Access to Medication Act.” You can find your Senator by going to www.senate.gov.
With winter weather exacerbating many Sjögren’s symptoms, including nasal dryness, the Sjögren’s Syndrome Foundation has been receiving a lot of questions about the use of Vaseline to relieve the pain associated with dryness of the nose and sinuses.
Below is a Question & Answer on this topic and how inhaling Vaseline, when used to sooth nasal dryness, can affect the lungs. This was taken from a past SSF National Patient Conference talk "Lung Complications & Sjögren’s," by Richard Meehan, MD, FACP, FACR.
Q. I’ve been putting Vaseline inside my nose. I’ve read recently that the grease can get in your lungs and cause a special type of pneumonia. So, is this something that you shouldn’t put in your nose?
A. Well, our ENT physicians don’t like Vaseline. They recommend that people frequent the use of nasal spray, that puts the normal saline back in the nostril. Some of them like to use a little bit of olive oil, but generally it's thought that Vaseline is toxic to the lungs if you inhale it.
- Dr. Meehan
Chief of Rheumatology and Professor of Medicine at National Jewish Health in Denver, Colorado. Dr. Meehan also is Co-Director of the Autoimmune Lung Center at National Jewish Health and a specialist in autoimmune diseases and rheumatoid conditions affecting the lungs.
Lung complications are sometimes the most misunderstood and life-threatening manifestations of Sjögren’s. Dr. Meehan will add to your understanding of the various pulmonary complications and leave you with knowledge to share with your own physician. The audio is taken directly from a talk given at our National Patient Conference.
Member Price: $16
Non-Member Price: $30
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Each talk is 30-40 minutes long, includes the Question & Answer at the end of each talk, and comes with the handouts used by the presenter.
The Sjögren’s Syndrome Foundation is excited to share that with the completion of the first genome-wide study of Sjögren’s, six new genes have been identified. Although this is only the very first step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions and treatments at the disease’s genetic level.
This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researches led by scientists at the Oklahoma Medical Research Foundation, OMRF, include two SSF Research Grantees: Dr. Kathy Sivils (Moser), 2011 SSF Research Grant Recipient, and Dr. Christopher Lessard, 2013 SSF Research Grant Recipient.
“I can’t begin to explain how much of a difference the SSF grant made to this work. And this is just a milestone in the beginning of our journey to understand the genetic causes of Sjögren’s. I know it’s a long way off, but I hope these discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease,” said Dr. Sivils.
“This is a first step. Now that we’ve identified these genes, we can dig down and start to understand how these genetic variants alter normal functions of the immune system,” added Dr. Lessard.
This study required 2,000 patients samples that were collected world-wide and tested against 7,000 healthy samples. One of the main difficulties with Sjögren’s research, is collecting the patient samples because there’s not one 100% conclusive test for diagnosing Sjögren’s, which is why the SSF has focused on funding research specifically on novel diagnostics.
It’s because of your generous support that the SSF is able to award grants to talented researchers like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research."I am proud that we were able to provide support for this groundbreaking research and look forward to future Sjögren’s breakthroughs,” said Steven Taylor, SSF CEO.
The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice Guidelines and our 5-Year Breakthrough Goal. We hope you will consider donating to the SSF Research Program and help us create a future filled with hope for all Sjögren’s patients and their families.
***This work appears in the journal Nature Genetics