Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Please take the time to write in and explain your difficulty paying for and use of otc drugs and remedies. We may be able to get them paid for or at min made a tax break. Want to voice off here you go .....
Making Our Voices Heard!
SSF Testifying at Congressional Hearing- We Need Your Help!
Dear whomever,
The Sjgren's Syndrome Foundation has been invited to testify before the U.S. House Ways and Means Oversight Subcommittee on Capitol Hill next week about the cost burden of over-the-counter (OTC) drugs and products patients depend on to treat Sjgren's. We need BRIEF stories about:
1. How aspects of Sjgren's that call for OTC treatments affects your life.
2. How the cost of OTC items has caused an undue burden on you and your family.
In addition to products for dry eye, dry mouth, dry lips, dry nose and dry vagina, the former can include the need for reflux, mucolytic, and GI motility agents. Other products such as humidifiers, neti pots, sun protection products and clothing and even special socks to help with neuropathies also can be mentioned.
Putting a personal face on this disease and the expense of having to cover so many costs that are not covered by insurance will help congressional members better understand what it is like to live with Sjgren's and the expenses patients face.
This congressional hearing specifically addresses the fact that patients now have to obtain prescriptions for OTC drugs and products to count toward Flexible Spending Accounts and Health Savings Accounts. Achieving the recognition by Congress that Sjgren's patients have medically necessary OTC costs is an important step in helping the SSF fight in the future for federal tax deductions, Medicare and Medicaid coverage, and, finally, insurance coverage of these OTC costs.
Please email your stories to etrocchio@sjogrens.org with the Subject Line: SSF Congressional Hearing. Thank you for your support on this very important issue!
Sincerely,
Steven Taylor
Chief Executive Officer
Making Our Voices Heard!
SSF Testifying at Congressional Hearing- We Need Your Help!
Dear whomever,
The Sjgren's Syndrome Foundation has been invited to testify before the U.S. House Ways and Means Oversight Subcommittee on Capitol Hill next week about the cost burden of over-the-counter (OTC) drugs and products patients depend on to treat Sjgren's. We need BRIEF stories about:
1. How aspects of Sjgren's that call for OTC treatments affects your life.
2. How the cost of OTC items has caused an undue burden on you and your family.
In addition to products for dry eye, dry mouth, dry lips, dry nose and dry vagina, the former can include the need for reflux, mucolytic, and GI motility agents. Other products such as humidifiers, neti pots, sun protection products and clothing and even special socks to help with neuropathies also can be mentioned.
Putting a personal face on this disease and the expense of having to cover so many costs that are not covered by insurance will help congressional members better understand what it is like to live with Sjgren's and the expenses patients face.
This congressional hearing specifically addresses the fact that patients now have to obtain prescriptions for OTC drugs and products to count toward Flexible Spending Accounts and Health Savings Accounts. Achieving the recognition by Congress that Sjgren's patients have medically necessary OTC costs is an important step in helping the SSF fight in the future for federal tax deductions, Medicare and Medicaid coverage, and, finally, insurance coverage of these OTC costs.
Please email your stories to etrocchio@sjogrens.org with the Subject Line: SSF Congressional Hearing. Thank you for your support on this very important issue!
Sincerely,
Steven Taylor
Chief Executive Officer
This will help us longterm as far as OTC costs. (hopefully) I sent mine in and got a nice response.
Please folks take the time and write. Want a voice here is your chance!
I sent my letter!!!
But my prescription coverage is 50% after I pay a 150.00 deductible. It used to be 80% and a 50.00 deductible.
They do cover restasis. But plaquenil they only cover 45pills at a time. Seeing I pay the first 150.00 how can they dictate anything before that is paid. They do. I asked my pharmacist he had no answer. I'm paying for it in FULL , they have NO SAY. When they pay 50% they can have a say.
I called them and am waiting a reply now.
OTC drugs are not the only things be discussed at the meetings. I also asked about dental work being covered by medical insurance after my dental coverage is met for the year. (1200.00) I have a medical condition that causes dental problems. Not the other way around , its absurd.
We all have stories that why writing will help they need them to fill in the blanks for congress and oversight committees.
Thanks for writing!!!