Ideas, Parts III and IV

The past week has been a little frustrating, as I have struggled to find the information I need online while trying to determine the best way to take the next step in starting the organization. I don't seem to be making much progress on either front. I'm just trying to be patient and keep reminding myself that things don't happen overnight.

I now bring the third and fourth (final) installment of my ideas for the organization. I am certain I will have more ideas later on, but these are the ones I have developed to the point of sharing.

1. Advocate better testing for Bovine Spongiform Encephalopathy (BSE) and stricter requirements on the sale of beef.

Public health is at risk due to insufficient testing requirements for BSE in the United States. The CDC reports that three cases of BSE have been found in the United States to date.[i] While no products derived from these known cases have made it into the food supply, the United States Department of Agriculture (USDA) provides testing for only a small percentage of all cattle slaughtered in this country. Current surveillance efforts are focused in herds where a BSE is most likely to be found.[ii] From a statistical standpoint, the sampling methodology and frequency may be inadequate to ensure public safety. The incubation period of the disease is long enough that many cattle may be suffering from the disease yet not show any symptoms, thus giving infected cattle ample opportunity to enter the food supply and endanger the general public.

Many similarities can be drawn between the current U.S. government denial of a problem and the reactions of the British government before the mad cow outbreak in the U.K in the 1980’s. The British government’s denial of a human health risk and subsequent lack of action caused the exposure of millions of citizens to BSE.[iii] In order to ensure the U.S. government does all it can to protect the public health and that no BSE cattle enter the food chain, all cases of BSE infection must to be publicized as extensively as possible. Identifying knowledgeable and reliable sources in the media who are willing to keep a spotlight on these issues is a key goal of the APDA.

While many regulations have been put in place to help protect the public, they are only effective if properly followed and applied. Feed bans and slaughterhouse procedures must be strictly followed to ensure the safety of the food supply. The organization will compile data on regulations and inform the public of violations, as well as work to improve oversight in areas where it is lacking. Organizations who compile this information already exist, and the APDA will build relationships with these organizations to assemble more thorough and relevant information.

The U.S. government lags behind Europe in restricting the sale of certain parts of cattle known to be the most infectious, i.e. brain, intestines and mechanically recovered meat. There are no restrictions on the use of bovine protein in drugs or protein supplements for humans.[iv] Additionally, it is still legal in the United States to include chicken droppings in cattle feed. Chicken feed often includes bovine protein, and prions have been shown to survive excretion, creating a scenario where prions could potentially reenter the bovine food supply and spread infection.[v] These areas are major sources of concern, and the organization will strive ensure these poor industry policies and practices are corrected.

2. Public Advocacy

A significant problem facing the prion disease community at this time is the lack of public knowledge about these diseases. The only information most people have about prion disease comes from BSE, and many only know it as “mad cow disease.” To increase public awareness, the organization will write letters to the editors of small and large papers and publications around the country. As the standing of the organization around the country increases, larger papers will be more likely to print our letters and press releases. In the meantime, the APDA will concentrate on writing to smaller papers in communities with CJD cases. The affected families in these communities will be consulted, as they may prefer to write the letters themselves.

As funding allows, the APDA will explore television and radio advertising to reach a large audience. This can be very costly, particularly to a small, start-up organization, but the benefits will far outweigh the costs.

The organization will provide information to the public on the organization’s mission and ongoing projects through the website (www.priondisease.org) and blog (currently at www.cjdadvocacy.blogspot.com, but will be relocated to website at a later date.) The APDA website will also host a moderated forum where site visitors can post their ideas and also find links to other prion disease-related sites.

[i] Centers for Disease Control website, About BSE http://www.cdc.gov/ncidod/dvrd/bse/ (February 13, 2009).
[ii] USDA publication USDA’s BSE Surveillance Efforts http://www.aphis.usda.gov/publications/animal_health/content/printable_version/fs_BSE_ongoing_vs.pdf (February 13, 2009).
[iii] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 172-82
[iv] Max, 219
[v] Max, 219