The Sjögren's Syndrome Foundation places a high priority on advocacy that will improve the lives of those with Sjögren’s.
Working with Legislators on Issues of Importance to Sjögren’s patients
We talk to leaders on Capitol Hill about a broad range of patient issues, including increased federal funding for research, coverage of expensive over-the-counter drugs and products used by Sjögren’s patients, access to specialists and treatment under managed care, better coverage from health insurance companies, and protection of patients' rights.
Increasing Federal Support for Sjögren’s
A major focus is on increasing awareness and research into Sjögren’s. The Foundation works closely with agencies that are part of the U.S. Department of Health and Human Services (DHHS) to encourage increased support of research into Sjögren’s. DHHS is the largest grant-making agency in the federal government and includes the National Institutes of Health (NIH) which funds the majority of medical and scientific research in the U.S.
The Foundation serves on several NIH committees whose mission includes research into Sjögren’s and has received NIH support for important SSF scientific conferences on Sjögren’s. In addition, the Foundation interacts with the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Agency for Healthcare Research and Quality (AHRQ) and the Center for Medicare and Medicaid Services (CMS).
Ensuring Better Federal Regulatory Management of Sjögren’s
We also educate federal regulators and legislators about the specific needs of Sjögren’s patients. We speak with regulators at agencies such as the Social Security Administration to improve disability coverage for those with Sjögren’s and the Food and Drug Administration to find ways to increase the availability of new drugs to treat this disease.
Partnering with Others to Further our Goals
To ensure success on initiatives important to Sjögren’s patients, the Foundation also frequently partners and takes on leadership roles with others, such as The National Health Council and the National Coalition for Autoimmune Patient Groups.
Recent Advocacy Accomplishments
The Sjögren's Syndrome Foundation testified before the U.S. House Ways and Means Oversight Subcommittee on Capitol Hill about the cost burden of over-the-counter (OTC) drugs and products patients depend on to treat Sjögren's. The SSF was the only patient group represented at the hearing. View the hearing and Steven Taylor, SSF CEO, testimony, which is shown around the 17 minute mark.
For the first time, Sjögren’s has its own separate listing under Social Security Disability Guidelines. Before this happened, patients had to fit criteria for other related diseases and were often denied for disability. Because of advocacy on the part of the SSF, the Social Security Administration (SSA) now recognizes that Sjögren’s patients need their own set of criteria for disease-specific symptoms and complications that can interfere with employment. The SSF and its Medical and Scientific Advisory Board worked long and diligently to educate and advise the SSA on the disability criteria for Sjögren’s.
Federal funding has increased dramatically for Sjögren’s research! In FY2000, the National Institutes of Health spent only $2.9 million on Sjögren’s, making Sjögren’s among the lowest-funded autoimmune diseases by that federal agency. By FY2005, NIH funding for Sjögren’s soared to include a nearly $12 million international registry on Sjögren’s and a $3.5 million Request for Applications for Sjögren’s research. The amount allocated for Sjögren’s research continues to climb every year.
Contact us today to add your voice to our advocacy efforts or to receive future information about programs and services available in your area.
Click Here to read SSF blog posts about advocacy