For many years now Lyme disease victims have advocated for better diagnostic procedures, testing and treatment for lyme disease. This disease is literally endemic along the east coast, the great lake states and thrives in every state in the nation.
Lyme disease and tick-borne co-infections can be extremely debilitating and painful. Patients can experience major organ complications/failure, paralysis, dementia and occasionally death.
The Board members of the Infectious Disease Society of America {IDSA} set lyme disease treatment guidelines for practitioners nationwide. Lyme disease activists have continually stated that these guidelines were inadequate to properly test for and treat this disease. Their latest set of guidelines were so restrictive that it appeared they were trying to administratively blot this disease from existence.
Lyme activists were outraged and accused the IDSA of capitulating to insurance interests, research interests and patent royalties in forming these restrictive and unscientific guidelines.
These guidelines were so outrageous in denying extremely ill lyme disease patients care that Attorney General Blumenthal of Connecticut launched an unprecedented anti-trust investigation of the IDSA and it's procedures in establishing these guidelines.
After a lengthy anti-trust investigation AG Blumenthal found these guidelines were formed by excluding contrary research, dissenting opinions were not allowed or tolerated, outside monied interests had unduly affected the establishment of these guidelines. In other words, the IDSA's guidelines were fraudulent.
AG Blumenthal appointed a medical ethicist to oversee a new empowered panel to view ALL research, evidence {contrary or otherwise} and establish a new set of guidelines. {ALL members of the IDSA's Board are excluded}.
See here: http://www.ct.gov/...
While lyme patients rejoiced that AG Blumenthal's findings may lead to better treatment of their extremely debilitating illness, the IDSA was quietly lobbying Rep. Frank Pallone who holds sway over HR741. This bill increases funding for lyme disease research, establishing better testing methods, gives patient advocates a seat at the table
http://www.lymediseaseassociation.org/
.....and allows knowledgeable lyme doctors to provide input.
http://www.ilads.org/
Unfortunately, Rep. Pallone has chosen to ignore the scores of New Jersey residents and hundreds of thousands of others nationwide afflicted with this disease. He promised Pat Smith {Lyme Disease Association President} that HR741 would be given a fair hearing. That was until IDSA lobbyists got a hold of him. Lyme disease is the fastest growing vector-borne illness in the country, no one is immune. The state of New Jersey is endemic, people in wheelchairs with IV drips protested in front of Pallone's New Jersey office. All to no avail.
As Pat Smith has so eloquently pointed out in the Youtube link below.........Fourteen IDSA Board members {who've been found fraudulent by AG Blumenthal} are more important to Pallone than the tens of thousands of New Jersey residents and scores of others nationwide who suffer daily with this debilitating disease.
Here's Pat Smith {LDA President} giving it both barrels to one of Pallone's Aides on the day of the protest. {Pallone was too cowardly to show his face and issued a Press Release}
http://www.youtube.com/...
Congressman Pallone's D.C. office info:
Phone: (202) 225-4671
Fax: (202) 225-9665
Not only should Pallone be given no funds for his re-election but New Jersey residents should be actively trying to primary Pallone out of office. If we wanted the ill discarded for the benefit of big business, we would have kept Republicans in charge.