Author | LymeDisease.org
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for. Here's some of what we're thinking about this Thanksgiving.
Lyme disease patients have trouble with insurance coverage. They have trouble getting health insurance if they have ever had Lyme disease, on the one hand. On the other hand, they have trouble getting the disease treated because insurers rely on the IDSA guidelines to take a "free pass" on treatment reimbursements. This is an area that is clearly governed by something other than providing quality health care to patients. Have you ever wondered what happens–really happens–when Lyme patient appeal an insurance denial? What happens is we succeed 9% of the time, while other diseases succeed 40% of the time. What is going on here? How can that be?
Fifty-five (55) is a remarkable number. Did you know it’s the sum of the numbers 1-10? 55 is the speed limit in some places. And it’s the international direct dial telephone code for Brazil.
Here’s something else about 55. According to California health officials, it’s how many new cases of Lyme disease the state saw in 2009. (When I learned this at today’s Lyme Disease Advisory Committee (LDAC) teleconference, I hit the mute button on my phone and started screaming. ARRRRRGHHHHH! I actually haven’t stopped. Can you hear it?)
On April 22nd, the IDSA guidelines review hearing panel rubber-stamped its Lyme disease guidelines in its final report of the hearing. Those of us who presented and attended the hearing were appalled. Sure we had our reservations about the ability of a panel stacked with IDSA members to impartially review the guidelines, but there were 1,600 pages of peer reviewed evidence that had been presented to the panel and independent scientists had attested to the persistence of the Lyme bacteria and the low quality of the tests. How could they ignore the weight of such evidence? How could they decide to leave the guidelines completely unchanged even though a panel of their own choosing was divided on the testing? To make matters worse, the IDSA then trumpeted the results of a stacked panel as "independent" in their report. Dr. Stricker and I were given the opportunity to respond to the IDSA "spin" and our letter to the editor was just published. An excerpt follows:
. . If you are currently a member of CALDA, this issue is on its…
Pamela Weintraub's stirring speech at the Institute of Medicine's state-of-the-science Lyme workshop on October 11 brought a standing ovation from the audience, and spirited discussion from panelists. Read the text of her remarks here.
On September 29th, Congressman Christopher Smith (NJ) introduced into the Congressional Record a report exposing the gaps in research in Lyme disease. The report was originally commissioned by the Institute of Medicine (IOM) from the California Lyme Disease Association, the national Lyme Disease Association, and Time for Lyme. However, the three groups pulled out of the IOM process because of a lack of transparency and the high degree of bias in the process, which undermined its integrity and could harm patients. The Congressional Record represents an opportunity to communicate key research gaps in Lyme disease in a credible venue. The report is available on line. The press release about the Research Gaps Report and the link to the Congressional Record of the report, follow. . .
Lyme disease almost wiped out Tracey Silver's acting career before it really got started. However, after three tough years of treatment, she improved enough to land a recurring role on the popular TV show "The Sopranos." She'll speak about the ups and downs of her own Lyme experience, as well as the critical need for more Lyme research, at the LA Lymewalk October 3.
I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.
Readers of this column recently learned about Colby Lenz, a remarkable San Francisco woman experiencing both severe neurological Lyme disease and a brain condition called chiari malformation. As she awaits brain surgery, she uses her time to help educate the world about Lyme disease via the internet. Recently, on her blog, she wrote an open birthday letter to her 90-year-old grandfather. In this poignant message between generations, she eloquently offers a window into the hard economic realities faced by many Lyme patients. She has given permission for this blog to be re-posted here.
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