Welcome to a Government Affairs E-News Alert from the
Sjögren’s Syndrome Foundation!
September 25, 2003
Third Edition of 2003
If you are one of the many joining the SSF Government Affairs E-Newsletter for the first time—Welcome! We are glad you filled out our government interest form and want to join a growing number who are committed to making a difference in the everyday struggle of living with Sjögren’s syndrome. At any time, if you do not wish to remain on this list, please reply to this e-mail simply saying “Unsubscribe SSF Government List”.
CALL FOR ACTION!
Reducing the burden of Over-the-Counter drug costs for Sjögren’s syndrome patients
The Sjögren’s Syndrome Foundation is working on federal legislation to pursue medical tax deductions for Over-The-Counter drugs and greater coverage of OTCs in flexible spending accounts. At the very least, these efforts will increase awareness about the tremendous burden for those who have Sjögren’s of paying for OTC drugs and products, and if passed, tax deductions should help alleviate some of the financial strain for many Sjögren’s patients and can lead to even greater coverage in the future by Medicare and other insurance drug plans. The IRS has just ruled that many OTC drugs can be paid for with pre-tax dollars through health care flexible spending accounts. This is a major breakthrough and first step to help with OTC coverage. However, costs remain non-deductible for itemized tax deductions for medical expenses.
To succeed, a Congressional bill will have to start with inclusion of drugs and products that are clearly used for health problems, such as eye drops, gels and ointments, nasal and oral moisturizers, reflux medications, and NSAIDS; most moisturizing lotions and toothpastes cannot be covered, even though special products for symptoms of Sjögren’s are manufactured and used by patients. You would not have to prove a diagnosis to get the tax deduction; it would be available to all citizens whose total medical expenses, including OTC bills, exceed 7.5% of adjusted gross income.
SSF is bringing in other nonprofit groups to get a bill introduced, and the groups will be featuring 3 or 4 different patients with different disorders who depend on OTC drugs as part of an information packet that will be distributed to legislators. One of those will be a Sjögren’s syndrome patient. We need a short, approximately 3-sentence, personal story about Sjögren’s and the burden of OTC costs, the wide array of products used, and dependence on OTC drugs to treat Sjögren’s and prevent complications.
If you have found OTC costs to be prohibitive, with major repercussions for you and your family and are willing to use your name and story, WE NEED YOU! Please send a short synopsis of your experience to khammitt@sjogrens.org. If your story is not chosen by the coalition to be used on this specific sheet for Congressional members, we can still use it when we visit legislators and in any stories published by us to increase awareness of this problem that affects all of us with Sjögren’s syndrome.
Your efforts can help the Sjögren’s Syndrome Foundation move this important coverage area forward for all Sjögren’s patients. Please send your story by Wednesday, October 1. We look forward to hearing from you!
SSF SAYS “THANK YOU!”
…For raising the Social Security Administration’s awareness about the seriousness of Sjögren’s syndrome
The Sjögren’s Syndrome Foundation thanks all of you who responded to our plea for assistance in the last E-Mail Alert. Twenty-nine messages about Sjögren’s syndrome were posted to the Social Security Administration’s webpage soliciting public comments on social security disability changes. Those stories will encourage administrators to recognize the potentially devastating impact Sjögren’s syndrome can have on patients and their families and add weight to the Foundation’s proposed changes submitted to SSA for disability guidelines. See details in the Foundation’s newsletter, The Moisture Seekers. You truly made a difference!
…For helping us to make tremendous strides in gaining support for the National Institutes of Health Autoimmune Diseases Research Plan
Our list of Congressional supporters is growing, thanks to SSF members who participated in April’s Capitol Hill Day and who wrote letters and contacted their legislators since that successful day. Support is increasing because of your requests for Congressional members’ support of this federal research plan. Watch The Moisture Seekers newsletter for your legislators’ name on the list of supporters. Don’t forget to share news of your letters and contacts with your legislator, and don’t forget to follow up with them to make sure they have fulfilled their promise of support.
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