Tuesday, April 17, 2012

Sjogren's Syndrome Foundation to Participate in Congressional Hearing

I wanted to help spread the word that the Sjogren’s Syndrome Foundation (SSF) is testifying for the US House Ways and Means Oversight Subcommittee in Washington D.C. next week and is asking for our participation.  The purpose of the hearing is about the costs and burden of over the counter treatments (OTC) for Sjoggies with the eventual goal that we will get insurance coverage for them.  We all know how many OTC products we rely on and how expensive they can be.  To help the SSF with their testimony and tell your story, email etrocchio@sjogrens.org with the Subject Line: SSF Congressional Hearing.  Keep up the good work SSF!


SSF to Testify at Congressional Hearing- We need your help!

The Sjögren'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 Sjögren's. We need BRIEF stories about:

  1. How aspects of Sjögren'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 Sjögren'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 Sjögren'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.

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