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Senator Gillibrand calls on Congress to provide emergency funding for acute flaccid myelitis research

STAFF REPORTS



WASHINGTON, D.C.  -- With an increase in cases of acute flaccid myelitis (AFM), a debilitating, polio-like disease that has been affecting children in New York and across the country, U.S. Senator Kirsten Gillibrand today called on Congress to immediately provide emergency funding for research, treatment, and prevention efforts against this disease. AFM is a rare condition that targets the nervous system, specifically the spinal cord, and can cause serious muscle weakness or paralysis. There is no known cause or treatment for this disease. The Centers for Disease Control and Prevention (CDC) have confirmed or are investigating hundreds of suspected cases of AFM in 46 states and in DC. 90 percent of cases have been in children under the age of 18, with the majority of patients between the ages of two and eight.

On November 13th, the CDC announced a new task force to investigate AFM. As Congress finalizes the Fiscal Year 2019 appropriations bill, Gillibrand will call on Congressional appropriators to provide the emergency funding necessary to give the CDC the resources it needs to investigate, treat, and prevent this debilitating disease.

“As a mother and as a Senator, I am taking AFM extremely seriously. I’ve been disturbed to read reports about this debilitating disease that has been affecting children in New York and across the country. Parents are extremely worried about what this disease means for their children, but doctors still don’t know what causes AFM or how it spreads,” said Senator Gillibrand. “I am calling on Congressional appropriators to include emergency funding to support the CDC’s efforts to learn more about AFM. I won’t stop fighting until the CDC has the support they need to keep our children healthy and safe.”

The number of cases of AFM are growing year after year. This increase in AFM cases over the last year is the third spike of AFM cases since 2014. In 2014, there were 120 confirmed cases of AFM, and two years later in 2016, there were 149 cases. Many of the affected children have had long-term paralysis or ongoing care needs. In the past, Congress provided emergency funding to support investigation and response efforts related to other serious diseases, such as Ebola, Zika, and Avian Influenza. As the number of cases of AFM continue to rise, Gillibrand calls on the Senate to do the same for this serious disease to help protect all children from AFM.

A copy of Gillibrand’s letter to Congressional appropriators can be found here and below:

November 27, 2018

The Honorable Richard Shelby
Chairman
Senate Appropriations
Washington, D.C. 20510      

The Honorable Patrick Leahy
Vice Chairman
Senate Appropriations
Washington, D.C. 20510

The Honorable Rodney Frelinghuysen
Chairman
House Appropriations
Washington, D.C. 20515      

The Honorable Nita Lowey
Ranking Member
House Appropriations
Washington, D.C. 20515

Dear Chairman Shelby and Ranking Member Leahy,

I write today to express concern about recent reports of increased cases of Acute flaccid myelitis (AFM) in children and to request that Congress include supplemental funding to support AFM research, response, and prevention efforts in a final Fiscal Year 2019 spending bill. 

As you may know, AFM is rare condition that affects the nervous system, specifically the spinal cord, and can cause serious muscle weakness or paralysis. The CDC has confirmed or is investigating 286 cases, but has not yet identified a cause, nor found a specific treatment for AFM. Furthermore, about 90 percent of these cases have been in children under the age of 18, with the majority of patients between two and eight years of age. While some of these children have been able to make full recoveries, many have had long-term paralysis or ongoing care needs.

According to reports, this is the third time the CDC has documented a spike in AFM cases since 2014. In that year, there were 120 confirmed cases, two years later in 2016, 149 cases, and to date this year, there have been 116 confirmed cases in 31 states out of a total of 286 suspected cases. Despite some correlation with respiratory viruses, this trend is particularly alarming given that the CDC has been unable to conclusively link AFM to any specific cause.

In light of this trend and the growing number of confirmed cases of AFM, on November 13, 2018, the CDC announced that it would be creating a research-focused task force to improve its tracking of AFM cases in order to determine the cause of this illness. To support these efforts, I respectfully request that your committees provide additional funding for AFM investigations, treatment, and prevention efforts in a final FY19 spending bill.

In the past, Congress has provided emergency funding to support investigation and response efforts related to Ebola, Zika, and Avian Influenza. For example, in the Fiscal Year 2017 Consolidated Appropriations Act, Congress provided $1.1 billion for Zika response efforts related to surveillance, research and development of vaccines and treatment options, training for the health workforce and a public education campaign. These funds were pivotal in helping to bolster national, state, and local responses, and helped to ensure health officials and the public had access to information about and treatment for Zika. 

Much like Zika, AFM is affecting our nation’s young children. As a mother, I believe Congress must make similar investments to ensure that the CDC has the resources it needs for AFM research, prevention, and response efforts, particularly as the number of cases of this rare, but serious condition continue to rise. I therefore urge your committees to provide additional funding to support the work of the CDC to fully understand the causes of AFM and its long-term effects on children in order to inform treatment and prevention efforts. It is imperative that we protect all children from AFM, and ensure that health officials, care providers, and parents and families have access to the most accurate and up to date information.   

Thank you for your past support in providing funding for health emergencies affecting children, and for your consideration of this request.


Sincerely,

Kirsten Gillibrand
United States Senator