Advocacy Background



Through hard work on the part of the CJD Foundation, The National Prion Disease Pathology Surveillance Center, and our families, we have achieved many of our political advocacy objectives.  We are concerned about many issues as the new policies begin unfolding.

In order to help you better understand the importance of advocacy work here are a few highlights:

  • We wrote report language which was submitted to the Labor, Health and Human Services and Education appropriations sub-committee for FY 2003.
    An additional $1M was added to the CDC budget for CJD surveillance.
  • We were invited to send a representative to the Institute of Medicine meeting in Washington, D.C. in 2005.  We attended this small meeting along with representatives from the House and Senate, FDA, USDA, American Red Cross, and CDC  to name a few, to discuss TSE policies as they relate to public health.
    A major result of this meeting was the committee’s request to the USDA to find the brain tissue of the first suspected US BSE positive cow which had been lost by their testing facility seven months earlier.  The tissue was quickly found, retested and announced to be positive. 
  • Upon learning that the National Institutes of Health (NIH) were planning to destroy their large collection of brains obtained from older CJD autopsies, we hastily organized a trip to the NIH to prevail upon them to reconsider.
     The brain collection was not destroyed.
  • We added our voices in support of the demands made by Congress and numerous other consumer advocacy groups for the investigation and subsequent closing of the Westland-Hallmark Plant.  This meat processing plant was slaughtering sick cattle and processing them for use in school lunches.
    The plant was closed almost immediately.
  • We submitted reports to Senators Richard Durbin and Tom Harkin, and Congresswoman Rosa DeLauro expressing great concern over the FDA’s announced problems with non-compliance with the Specified Risk Materials (SRM) Feed Ban.  We clearly outlined the inherent dangers of this poorly monitored ban.  In September 2008, we were asked by Senator Durbin to submit formal comments on the SRM Feed Ban.
    The ban was greatly strengthened but was unfortunately delayed.  It was implemented in June, 2009 but has been difficult to enforce due to limited inspectors.

    We have made many trips to Washington to meet with members of the House and Senate and have also met with two Secretaries of Agriculture on this issue.  
  • We wrote report language that was submitted to the senate appropriations committee for FY 2016.
    Outcome is pending.

    We are grateful to those families who helped our cause by making Capitol Hill visits during the CJD Foundation Family Conferences.  I have listed some of our requests and results below. 

    (1)   We asked that the FDA’s food functions be unified under one agency.  This one agency should be responsible for food safety, including inspection (at any stage) and accountability.  There should be a single person responsible for reporting directly to the Secretary of Health and Human Services.
    On Sunday March 15, 2009 the New York Times reported that “Mr. Obama announced the creation of a Food Safety Working Group which will include the Secretaries of Health and Agriculture” and representatives  from the Food and Drug Administration and the Centers for Disease Control and Prevention.

    (2)  We asked that Congress demand feasible inspection measures and accountability from the FDA regarding their regulations banning  all brains, spinal cords and  other specified risk materials (SRMs) from animal feed (Title 21, Part 589.2000 of the Code of Federal Regulations known as the “Ruminant Feed Ban”).  These SRMs pose a high risk of infectious agents reaching healthy stock.
    Almost immediately after his confirmation, the new USDA Secretary Tom Vilsack announced that “downer cattle” will be banned from slaughter, an excellent beginning but there were and still are many critical loopholes to address.

    (3)  Increased BSE Surveillance, including mandatory inspection of all USDA approved meat packing facilities.
    The USDA has promised to improve the inspection of all meat packing plants.

    (4)  We urged the appointment of an Ombudsman in the US Department of Agriculture who will report directly to the Secretary of Agriculture, to address food safety and humane slaughter issues.
    On January 7th, 2011, Dr. Elisabeth Hagen announced that The USDA’s Food Safety and Inspection Service (FSIS) will be making significant changes this year to strengthen humane handling enforcement - making it a more objective, and less subjective, measure.  In her announcement she stated:

    “As a public health agency, FSIS is responsible for ensuring that America’s supply of meat and poultry products are produced both safely and humanely. USDA takes that responsibility seriously and is deeply committed to the humane handling of livestock as we strive to improve food safety efforts.

    That is why under this Administration, we have significantly boosted our ability to enforce the Humane Methods of Slaughter Act. Changes in policy we made last month will now close a loophole that once allowed elderly or sick animals to be processed as food, after resting or receiving veterinary care. Those animals will now be humanely euthanized.

    We are also taking concrete steps to address outstanding humane handling issues–solutions ranging from extensive employee training to clearer guidance on existing rules. 

    We are appointing an Ombudsman in the Office of Food Safety who will act as an independent and impartial arbiter, accepting concerns in a confidential yet informal setting for FSIS employees who feel that their humane handling concerns may not have been addressed by current reporting mechanisms.”

    (5)  Centers for Disease Control and Prevention: Human Prion Disease Surveillance
    To keep pace with the growing demand for national surveillance of human prion diseases, especially in light of the drastic reduction in animal prion surveillance by the US Department of Agriculture and of the discovery of Bovine Spongiform Encephalopathy (BSE)-positive cows endangering human health, we asked Congress to appropriate $5.7M in 2008 and $6.2M in 2009 in order for the Centers for Disease Control and Prevention to maintain human prion disease surveillance.  The Administration requested $5.4M in FY 09.
    The budget passed with $5.39M for surveillance in FY ’10.

    (6)  Funding was passed for FY11 by Continuing Resolution.

    (7)  For FY12 the appropriation for human surveillance was zeroed out of the President’s Budget but through the efforts of Dr. Gambetti, the CJD Foundation, and the families, approximately $5M (8% decrease over FY11) was appropriated for the CDC surveillance program.  Of this amount, $2.5M is expected to be allocated to the NPDPSC.

    (8)  For FY 2013, the CDC was notified that it received an appropriation of $4.710M. Although this was a reduction, it allowed the Center to survive and continue to develop more efficient detection methods while providing an acceptable level of prion surveillance.

    (9)  We asked for Congressional support in maintaining the National Prion Disease Pathology Surveillance Center’s (the NPDPSC) appropriation for FY 2015 at a level that does not decrease below the FY 2014 appropriation.
     In FY 2014 the CDC received an appropriation of $5.65M.  In FY 2015, the CDC received an appropriation of $5.85M.

We are the embodiment of Margaret Meade’s famous words, never doubt that a small group of dedicated people can change the world, Indeed it is the only thing that ever has.

You can see from this brief background that your visits to Capitol Hill do make a difference. If you are unable to stay for our Advocacy Day on Monday please make an appointment and meet with your representative when you get home. The work we all do together is important; your voice speaks loudest when it speaks from your heart.

nt; your voice speaks loudest when it speaks from your heart.