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Lorraine Johnson, JD, MBA
Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t.
LymeDisease.org’s recently published survey found that patients with chronic Lyme disease reported low quality of life. They had more days that were bad physically than the general population and than most other diseases. They suffer high rates of unemployment and disability. Even those who are able to work, often must stay home ill or reduce their hours. At work, many say they were unable to concentrate. The survey paints a graphic picture of lost productivity among those with chronic Lyme disease.
Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.
We are all concerned about the latest report from the IDSA statement that they plan to issue their final report regarding the IDSA guidelines review panel by the end of April. We are particularly concerned about whether the IDSA has corrected its voting violations. There may be other actions for the community to take as this unfolds, but right now, it is critical that we continue keeping the pressure on for other state AG’s to send letters to the IDSA (IMPORTANT: cc the CT AG) expressing concern about the voting violations and asking for compliance. Letters from legislators would also help spotlight the importance of the issue. Information on how to do this is posted on CALDA’s website along with the press release issued by CALDA, TFL and the LDA.
This is a chart of the relative importance of different stakeholders to big Pharma. (Click chart to enlarge.)
I was really struck by how little weight patients were given (9%) compared to specialists (47%) and compared to key opinion leaders (21%).
So if you take specialists and add key opinion leaders to that, 68% of drug companies thought that key opinion leader who are specialists would have the
most influence on their company over the next 2 years. Wow! And, look at the lowly role of the general practitioner
Connecticut residents are urged to sign the petition to hold the IDSA legally accountable for violating the antitrust Settlement Agreement with the CT AG. Patients in the Lyme community are alarmed by the IDSA’s flagrant violation of the antitrust Settlement Agreement. Those in Connecticut are urged to sign the petition (link below in full story) electronically and to download a print version of the petition and take it door-to-door, at shopping centers, post offices and other public venues to gather signatures. We need to make our voices heard and we need to make them heard now. Paper petitions may be downloaded from the link below this blog post and should be mailed back no later than May 31st to Time for Lyme, 30 Myano Lane, Ste. 20, Stamford, CT 06902. If you are a Connecticut resident or you know anyone in Connecticut, please get this petition distributed and signed. The health and well-being of Lyme patients depends on it!
