What’s going on here?
On Monday, I attended a forum hosted by Honorary Chairman Congressman Chris Gibson and the LymeNext Organizing Committee at Skidmore College in Saratoga Springs. I was struck by the association one of the speakers made between the current treatment denial by insurance companies for LYME Disease and the government sponsored Tuskegee research performed from 1932 to the 1970′s which looked at the long term effects of syphilis in the black population.
Essentially, after penicillin was discovered as a cure, researchers continued to deny such treatment to many study participants. Many patients were lied to and given placebo treatments so researchers could observe the full, long term progression of the fatal disease. The current denial by insurance companies, for the long term treatment of chronic Lyme sufferers, rang parallel to the Tuskegee experiments in which effective treatment was withheld.
What’s going on here? Why is the treatment of Lyme Disease blocked and so politicized? And what about the extreme out of pocket costs for those who seek treatment because of insurance company denial? Do we need to go as far as a congressional committee to get suffers of chronic Lyme the treatment that will alleviate their suffering? That is how the Tuskegee experiments were finally resolved which resulted in the enactment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act.
It wasn’t until May 16, 1997, when President Bill Clinton formally apologized and held a ceremony for the Tuskegee study participants.
We need to learn from the injustices of the past and get the Lyme Disease reform needed for treatment for chronic lyme mainstream. We want action not an apology.