The article by Lisa Chamoff, “AG chides Lyme panel for not following settlment agreement”, is a good read generally. We always appreciate balanced coverage. To read the full article, click here.
You can follow additional comments on Lyme policy at www.lymepolicywonk.org. You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
Yesterday, patient advocates testified before the Joint Committee on Financial Services for a bill (H. 989) that would require insurance companies to cover antibiotic treatment for Lyme as prescribed by a physician. LymeDisease.org submitted a chart book as testimony. Drawing on our survey results and a key cost of illness study by Dr. Zhang of the Centers for Disease Control and Prevention, our submission tells the story of how medical costs by insurers have been cut 75% while costs borne by patients, their families, society, and public governments for loss of productivity have increased 200%.
You’ve all heard that the latest drum-roll from the rheumatologists at the IDSA hearing was essentially to say that Lyme patients have persistent symptoms and they started off with infection, but now we don’t “believe” in persistence—so what do you call it? How about “medically unexplained symptoms” or MUS for short? All of this seems to regard the real problem with Lyme disease as being what you call it. But patients know the real problem with Lyme disease is how you treat it, how you cure it, how you restore patients to their lives. Disease definitions like MUS are for drug-makers who sell drugs to a market, physicians trying to claim professional turf, and insurers trying to deny treatment reimbursement. They are not for patients. Abraham Lincoln had it right when he said: “How many legs does a dog have if you call the tail a leg? (Answer) Four. Calling a tail a leg doesn't make it a leg.” I’m not the only one who finds these acronyms aggravating and unhelpful. A post from the internet nails it:
In a press release issued at the end of last year, the IDSA called on the US and European Union to develop 10 new antibiotics by the year 2020. IDSA President Richard Whitley said that “creating a stable research infrastructure for antibiotic development” was essential to provide physicians with the tools necessary to effectively treat patients. That’s good news for the Lyme community because unacceptably high treatment failures occur with all current antibiotics used to treat Lyme disease and the rate of development of new antibiotics has been low. Pharmaceuticals have not been interested in developing new antibiotics because they do not generate the level of profit that drugs that are taken by a broad demographic over the course of a lifetime, like cholesterol medication, do. This is the good news. Now for the bad news.
Have you ever wondered how many people have chronic Lyme disease? The NIH estimates between…
We are in the midst of a sea of change in healthcare—driven largely by healthcare reform and evidence based medicine. Public trust is critical to the success of healthcare reform. But many patients believe that EBM is vulnerable to corruption by stakeholders—like insurers seeking to control costs and panel members who have industry conflicts of interest. Patient distrust in IDSA Lyme guidelines is high because Lyme patients believe that the guidelines panel was corrupted by industry conflicts (diagnostic tests, vaccines, and insurance) and researcher self-interest. Today, a shift from old models of medicine toward patient-centered medicine is emerging. It seeks to focus medical attention on the individual patient needs and concerns rather than those of physicians, insurers, pharmaceutical companies, and researchers. At LymeDisease.org we have been up to our eye-balls in EBM and patient-centered care since 2004, when we launched the two standards of care campaign.
LymeDisease.org has launched a new survey regarding the FDA’s proposed regulation of Lyme lab tests. We need your views on this very important topic. This is extremely time sensitive so please respond quickly! We will use this information to assess patient views and to inform our meetings with the FDA. Our last survey drew over 6,000 responses and was published this year. We need your input now!
