Advocacy
The PANDAS Resource Network will place a high priority on advocacy that will improve the lives of those with PANDAS. Goals of this organization include:
Working with Legislators on Issues of Importance to PANDAS patients & their Families:
Our goal is to work with leaders on Capitol Hill about a broad range of patient issues, including increased federal funding for PANDAS patients, access to specialists and treatment under managed care, better coverage from health insurance companies, and protection of patients' rights.
Increasing Federal Support for PANDAS Syndrome:
A major focus is on increasing awareness and research into PANDAS. The Foundation plans to work closely with agencies that are part of the U.S. Department of Health and Human Services (DHHS) to encourage increased support of research into PANDAS. 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.
Having the Foundation serve on several NIH committees whose mission includes research into PANDAS and recieve NIH support for important PSF scientific conferences on PANDAS. In addition, having the Foundation interact 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 PANDAS syndrome:
To educate federal regulators and legislators about the specific needs of PANDAS patients. Speaking with regulators at agencies such as the Social Security Administration to approve and improve disability coverage for those with PANDAS (and the Food and Drug Administration to find ways to increase the availability of new drugs to treat this disease.
Social Security:
Having PANDAS as a separate listing in Social Security Guidelines. Currently patients have to fit criteria for other related diseases and are often denied for disability. Advocacy on the part of the PANDAS Resource Network will help SSA reconize that PANDAS patients need their own set of criteria for disease specific symptoms and complications. Working with SSA to advise and educate them on the disability criteria for PANDAS.
Partnering with Others to Further our Goals:
To ensure success on initiatives important to PANDAS patients, the Foundation partnering and taking on leadership roles with others, such as The National Health Council and the National Coalition for Autoimmune Patient Groups.
In 2009, approximatley $20B was spent by the National Institute of Health. Of that $2B was invested in research on mental health for 7338 grants for an average grant size of $217K.
- 175 grants were > $1M
- 795 grants were between 500K and $1M
- 4419 grants were between 100K and 500K
- and the remainder < $100K
In 2009 Dr. Swedo had a grant of $200K. Of this only a small portion was available for funding researchers like Madeline Cunningham at Univ of Oklahoma who is doing amazing research in the area of diagnostic testing/CamII markers and how they relate to PANDAS. Which is outlined in the research grant summary (Project Number: 1ZIAMH002666-17) you'll find that the majority of the study is around the recruitment and testing of PANDAS children with riluzole. It is likely with so many requests for funding for other diseases last year (and this year) and the relatively low diagnosis of PANDAS that they decided to only fund one study. There are an estimated 250,000 children out here un-diagnosed/mis-diagnosed yet it is the same reason why researchers don't get the funding for the right research (or any research surrounding PANDAS) because there is not enough awareness, without awareness, children go mis/un-diagnosed without diagnosis there is no funding. (vicious cycle). We plan to break this cycle.