2021 congressional lobby event

2021 Congressional Lobby Event


It’s A Virtual World

It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research Alliance and our SS community during this two-day virtual event. On Wednesday, March 3rd, the SSRA will meet with Senator Ted Cruz and Senator John Cornyn’s offices. On Thursday, March 4th Rori will meet with Representative Pat Fallon and Representative Lance Goodin’s offices.

On the agenda for this year’s discussion is the importance of our congressional officials joining the Bi-Partisan Rare Disease Caucus.

The bipartisan and bicameral Rare Disease Congressional Caucus is led by Representatives G. K. Butterfield
(D-NC) and Gus Bilirakis (R-FL), and Senators Roger Wicker (R-MS), and Amy Klobuchar (D-MN) to promote awareness and congressional support of rare disease issues.

2021 SSRA Legislative Support Requests


A 2008 V.A. autopsy study identified previously undiagnosed superficial siderosis cases postmortem equal to 9% of the confirmed 2008 U.S. patient population. 21.6 million veterans are in the V.A. healthcare system as of 2014, with an estimated 22.8% at risk for the effects of trauma, TBI, or neurodegeneration. Currently, the cost per veteran receiving chelation therapy for superficial siderosis is $93,000 annually with the negotiated wholesale V.A. drug price schedule.


We request that Congressionally directed Department of Defense medical research programs include a grant for the study of superficial siderosis to develop a protocol for screening all active-duty military personnel and veterans that have suffered head or spinal cord injuries in the line of duty. DOD-funded support should be strongly considered due to the etiology of superficial siderosis and the long-term progressive nature. The evidence suggests military personnel and veterans at risk from past in-service injuries will increase the treatment, surgical, and permanent disability burden on the V.A.


The chelation cost for each superficial siderosis patient is an estimated $117,600 annually. This cost estimate does not include surgical intervention or additional specialty care. SSDI regulations mandate a 24-month waiting period before an SSDI recipient is eligible for Medicare. The out-of-pocket expense associated with private healthcare may bankrupt some families. Patients without access to private healthcare must qualify for state Medicaid programs or delay treatment for 24 months if they do not qualify, allowing continued unchecked progression.


There is no Medicare wait time if the patient is 65+ We request Congressionally directed support for waiver of the 24-month Medicare wait period for patients who do not have access to or qualify for a state Medicaid program or private insurance and whose severe progression qualifies them for SSDI benefits. 

Rare disease FY 2022 appropriations priorities involving NIH, CDC, and FDA

Bill: Agriculture, Rural Development, Food and Drug Administration, and Related Agencies
Section: Food and Drug Administration, Office of the Commissioner, Office of Orphan Products Development
THE SSRA REQUESTS YOUR SUPPORT Provide $30 million for the Orphan Products Grant Program to reflect the full authorized funding level, and support the following language: Developing Products to Treat Rare Diseases. The Committee is aware of the increasing number of therapeutics in development for rare disease patients. As such, the Committee recognizes the importance of the Orphan Products Grant Program which supports the development of products to treat orphan or rare diseases including the programs to support clinical trials and natural history studies. The Committee provides funding in this bill to increase the number of awards in
both categories by ensuring the program is fully funded at $30 million to reflect the level authorized in statute, the documented burden of a rare disease, and the significant number of unfunded but meritorious grant applications. | | Superficial Siderosis Research Alliance is a 501(c)(3) nonprofit organization | Tax ID 84-2515094

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