VetsFirst believes veterans will greatly benefit from proposed legislation to create a patient registry maintained by the National Institutes of Health that would track undiagnosed diseases.
The proposed legislation––titled the “Charles August Long (CAL) Undiagnosed Diseases Research and Collaboration Network Act of 2011”(H.R. 2671)––will provide the medical community the ability to instantly share data on undiagnosed illnesses with each other so that they can work together to develop effective treatments and ultimately cures for illnesses that are currently a mystery.
Heather Ansley, VetsFirst’s director of Veterans Policy, discussed how the CAL Network could be particularly useful to the Department of Veterans Affairs (VA) during a recent press conference in Washington, DC that introduced the bill.
“We are excited about the opportunities for collaboration between physicians, researchers, and government agencies that will be created through this legislation,” Ansley said.
“Although VA maintains registries for exposure to certain substances and environments, the CAL Network will allow VA to benefit from the experiences of and facilitate collaboration with the larger health and research communities,” she added.
The legislation would also help veterans who do not obtain health care through VA but develop undiagnosed diseases more easily connect to the illnesses of other veterans who use VA health care. Specifically, the CAL Network will ensure that VA is able to see patterns among not only the veterans they serve but those present in veterans who seek private care.
This bill will provide the commonsense networking tools for our medical community to better share information on undiagnosed illnesses,” said Congressman John Carter, who sponsored the legislation in response to thousands of families across the country struggling to care for loved ones with undiagnosed diseases.
Other sponsors include Congressmen David Dreier (R-CA); Michael Burgess (R-TX); and Dennis Kucinich (D-OH).
“After studying this issue for some time, I was surprised to learn that there is not a more effective approach for physicians to identify and talk with other doctors who are treating patients with similar undiagnosed illnesses. The establishment of the CAL Network will put in place a forum for physicians to search for similar cases and facilitate cross-disease research of undiagnosed diseases. Ultimately, the faster a problem can be identified, the easier it will become to improve the care of the patient,” Dreier explained in a press release.
The Cal Network Act is named for Charles August Long ‘Cal’ of Cedar Park, Texas, who passed away in December 2006 at the age of 5 due to an undiagnosed illness.
Press conference attendees included Heather Long (the bill is named for her son); James Alton, an undiagnosed disease patient and his parents, Greg Alton and Caroline Loewy of Atherton, California; and AMVETS National Acting Legislative Director Christina Roof.
Cal Network press conference attendees. From left to right: Congressman Dreier, Heather Long, Greg Alton, Caroline Loewy, James Alton, Emily Long, Congressman Carter, Heather Ansley (VetsFirst), Christina Roof (AMVETS)