A new U.S. law designed to update and expand data on Americans with multiple sclerosis (MS) and similar illnesses will significantly advance disease research, said the National Multiple Sclerosis Society (NMSS).
The spending bill, signed into law Sept. 28 by President Trump, provides $5 million to the Centers for Disease Control and Prevention (CDC) for the National Neurological Conditions Surveillance System authorized in 2016 by the 21st Century Cures Act.
Patient groups such as the NMSS and the Michael J. Fox Foundation for Parkinson’s Research (MJFF), which have pushed to authorize and fund this national system for more than a decade, welcomed the law.
“This is incredibly exciting news for the MS community,” Bari Talente, NMSS executive vice-president for advocacy, told Multiple News Sclerosis Today by phone. “We don’t have a registry for MS, so there’s a lot of information we don’t know concerning who gets MS and what their care looks like. The surveillance system can help answer some of these questions over time.”
Details on implementation of the system — such as when collection begins and ends — are mostly unclear and will be determined by Shawna Mercer, chief of the CDC’s Community Guide Branch and director of its Guide to Community Preventive Services.
MS patients won’t have to take any specific action, Talente said, explaining that the new system will likely examine health claims data and available medical records. Privacy laws were taken into account when crafting the measure, she said.
“This is not a case where we’re capturing information, or where a healthcare provider will be reporting,” she said. “This will be a case of a broader overview of the landscape.”
NMSS intends to send letters explaining the new law this week to its 65,000-member MS Action Network. It will also post details in its newsletter, on its website, and through social media.
Leslie Ritter, senior director of federal government relations at NMSS, said the society will be “actively engaging with the CDC throughout the process.”
The system is expected to markedly accelerate research by providing better analysis of genetic and environmental neurological disease factors. It will also help with aspects such as the geography and demographics of diagnoses, variances in gender, the percentage of U.S. residents who have these diseases, and changes in healthcare practices and patient utilization.
“This new National Neurological Conditions Surveillance System will provide important demographic data on neurologic conditions like MS and give us a better understanding of their impact on Americans,” Talente said in a NMSS news release.
As it stands now, for example, people who suspect environmental factors are causing a disease in a specific area will often contact the CDC’s Agency for Toxic Substances and Disease Registry, whose role is to protect communities from exposure to hazardous substances.
“They’ll say it looks like a lot of people in my neighborhood have whatever disease,” Talente said. “That’s when the CDC said it didn’t have a baseline of what normal looks like. So, the concept for the surveillance system grew from there.”
Ritter added: “Since we don’t know where there could be pockets of people who have MS, this system can show us ages, racial makeups, and genders. We can overlap what’s found with other neurological diseases to see if there’s a commonality in environmental conditions.”
The NMSS now believes, as previously reported, that nearly one million Americans have MS — more than double the 400,000 figure widely used in a study that relied on updated 1970s data from the U.S. Census Bureau.
Ritter said her organization “no longer had confidence” in what it believes is obsolete data.
The increase in the rate of diagnoses can be partly attributed to MS patients living longer, to better diagnostic tools, a greater willingness to be tested, and better treatment, Ritter noted.
Although it will take time before the system’s in place, Ritter said, it will ultimately be an important research tool.
“It will be more of a slow build over time as we start to see the usefulness,” she explained. “The end game is to have consistent data across the U.S.”
U.S. lawmakers backing the new law included Reps. Michael Burgess (R-Texas), Tom Cole (R-Oklahoma), Ryan Costello (R-Pennsylvania), John Larsen (D-Connecticut) and David Price (D-North Carolina), as well as Sens. Johnny Isakson (R-Georgia), Chris Murphy (D-Connecticut) and Chris Van Hollen (D-Maryland).