Wow. Todd Park, Chief Technical Officer at HHS, ought to be jumping out of his skin with joy at this one.
This time, House, M.D. fans, it was lupus. The article “Evidence-Based Medicine in the EMR Era” published in the Nov. 10 issue of the New England Journal of Medicine might have read like a House television script, but it was a real-life glimpse of what the most optimistic health IT advocates are hoping will become commonplace in U.S. health care: Mining EHR data to arrive at treatment decisions.
In a Health IT Exchange piece (on TechTarget) EHR data spurs real-time evidence-based medicine, Don Fluckinger summarizes (and dramatizes, accurately) this early specimen of care being transformed – beyond the literature – by looking at past records. Faced with a 13 year old lupus patient with a complex problem (see article for details)…
In four hours, they did a retrospective study of similar patients in the hospital’s data warehouse…, and decided to move ahead with the treatment based on the previous results of 98 [similar patients] … The authors said they will never know if they made the “correct” decision, but they did know that — in absence of randomized trial research to support their decision — they acted on the evidence of the best data available, coupled with their experience.
“Our case is but one example of a situation in which the existing literature is insufficient to guide the clinical care of a patient,” the authors wrote. …
What are we waiting for, people?? Imagine if Read more »
*This blog post was originally published at e-Patients.net*
Whenever a patient asks whether they can exercise, or go here, or there, I liken it to them asking whether they can live life. My answer is always the same…YES. The alternative seems terrible.
In this regard, moving on in the face of illness, let me share with you the writings of a very famous twitteratti, my friend, Melissa T (or @drSnit). Her post today about “doing sick well” struck my optimistic neurons.
You may wonder, how it is possible; putting sick and well together in the same sentence? Let me share her writings…
Dr Snit, author of the blog, “Living with Lupus–But Dying of Everything Else,” should know. She lives with the disease called Lupus–a mysterious ailment known for its flares of inflammation. These spasms of joint, muscle and overall body aches make a post-ride soreness feel like nothing. It’s a tough lot having Lupus.
But yet, Dr Snit stomps forward in life–in defiance of the most inflamed of the inflammatory diseases. She writes Read more »
*This blog post was originally published at Dr John M*
Lupus, an autoimmune disease, [recently] turned up on the front page of the Wall Street Journal (WSJ). It cropped up, also, on the first page of the New York Times business section, and elsewhere. Scientific American published a nice online review just now. The reason is that the FDA has approved a new monoclonal antibody for treatment of this condition.
The drug belimumab (Benlysta), targets a molecule called BlyS (B-lymphocyte Stimulator). The newspapers uniformly emphasize that this drug marks some sort of triumph for Human Genome Sciences, a biotech company that first reported on BlyS in the journal Science way back in 1999. BlyS triggers B cells to produce antibodies that in patients with lupus tend to bind and destroy their own cells’ needed machinery, causing various joint, lung, liver, kidney, brain, blood vessel and other sometimes life-threatening problems. So if and when Benlysta works, it probably does so by blocking aberrant autoimmune B-cell activity.
The newspapers don’t give a lot of details on the drug’s effectiveness, except that it appears to help roughly one in 11 patients, and the main benefit may be that some lupus patients on Benlysta can reduce their use of steroids, which have long-term and toxic effects on many organs. The most recent major medical publication on a trial on the drug came out in the Lancet two weeks ago.
Some reported caveats are that the drug has not been adequately tested or approved for patients with severe kidney or neurological manifestations of the disease, and that its activity, marginal as it is, appears to be less in patients of African heritage based on trials completed thus far. Additional trials are in the works.
The drug is expensive, to the updated tune of $35,000 per year. According to the WSJ: “Estimates of how many Americans are affected range from 161,000 to 1.5 million.” (How’s that for a wide ballpark figure? Likely a function of how hard it is to define and establish diagnosis for this disease, which anticipates how hard it will be to measure this drug’s effects — see below.) The same WSJ piece says analysts expect the drug to become a blockbuster, with annual sales eventually topping $1 billion. Read more »
*This blog post was originally published at Medical Lessons*
Following on the heels of the annual ACR scientific assembly (and my interview with Dr. Wallace), I reached out to Sandra Raymond, President and Chief Executive Officer of the Lupus Foundation of America, to discuss lupus from the patient perspective. Sandra’s rhinovirus infection (she had a cold) did not stop her from completing an excellent interview with me.
Listen to the podcast here, or read a summary of the interview below.
Dr. Val: Tell me about the Lupus Foundation of America (LFA).
Raymond: The Lupus Foundation of America is the nation’s leading organization dedicated to finding the causes and cure for lupus. We also provide services, support, and hope to all people living with lupus. We have a national research program called “Bringing Down The Barriers” and we fund grants to researchers in academic institutions across the country. We are also very active on Capitol Hill, lobbying for research and educational efforts. In a few months we’ll be launching a public awareness campaign to help Americans understand this disease.
Dr. Val: Of which key accomplishment of the LFA are you most proud?
Raymond: LFA has been able to expand medical research efforts for lupus. This not only gets us closer to finding a cure, but it offers hope to those who are living with the disease.
Dr. Val: In your view, what do patients with lupus need the most?
Raymond: They need safe, effective, and well-tolerated treatments. November the 20th, 2008, marks 50 years without a new, approved treatment for lupus. The treatments that patients are currently taking can be very harsh. They sometimes cause side effects that are worse than lupus itself! We must step up our research efforts to discover safe and effective treatments to bring this disease under control and provide patients with a better quality of life.
The good news is that there are quite a few pioneering biotech companies who are investing money in finding a cure for lupus. So there may be new drugs on the horizon.
Autoimmune diseases affect 23 million Americans. Lupus accounts for at least 1 million of those, but if we can figure out what causes lupus, there are implications for all disorders of the immune system. Read more »
Daniel Wallace, MD
The annual American College of Rheumatology conference was held last week in San Francisco. I had the chance to interview Dr. Daniel Wallace, a world expert in lupus (systemic lupus erythematosis) management, to tell me about the latest advances in the treatment of this disease.
Dr. Wallace is currently a Clinical Professor of Medicine at the David Geffen School of Medicine at UCLA. His clinical practice is based at Cedars-Sinai, where he is involved in the care of 2,000 lupus patients, the largest practice of its kind in the United States. The Wallace Rheumatic Disease Research Center currently runs over 30 clinical trials for patients with lupus and other rheumatic diseases. Dr. Wallace is the author of 6 medical textbooks, 15 book chapters, and over 200 medical publications.
**Listen to the podcast of our interview here**
Dr. Val: What is Lupus?
Dr. Wallace: Lupus is what happens when the body becomes allergic to itself. It’s the opposite of cancer and AIDS. There are probably about 1 million people living with lupus in the United States. Ninety percent of them are women, and 90% develop lupus during their reproductive years.
Dr. Val: Historically speaking, what has treatment been like for patients with lupus, and how has that changed over the years? Read more »