Last Thursday I spoke to Gil Yosipovitch, an eminent dermatologist and itch expert at Wake Forest University. I called him because Martin Steinhoff said Yosipovitch ran the only itch clinic in the United States, and I wanted to learn how such a clinic operates.
The only problem: Yosipovitch does not run an itch clinic. There are NO itch clinics in the United States. "I very much believe it's the future and there should be many of them," he says. He's happy that Steinhoff is establishing one. The centers in Germany are the model; apparently a colleague is also starting one in Singapore.
Y believes there are a couple barriers to itch clinics getting started in the US. The major one is insurance companies and the current system for reimbursement; doctors have much more incentive to do basic treatment like wart removal than they do to care for patients with chronic conditions who require regular monitoring. Also, he says, to establish a clinic, a department chair (at a hospital or university) has to put money into it. That means leadership, and no-one except for Steinhoff has shown that leadership.
Y says that he likes Steinhoff's plan of directing a clinic with a number of resident doctors and a nurse practitioner who keeps in touch with patients through an online forum. In fact, Y himself once ran such a forum, called "Living with Itch" (if I understand correctly, it got folded into the International Forum for the Study of Itch website, but I can't find a link to old postings). The problem was that the site, on which patients shared their "anguish, frustration, and practical ideas," was quickly "hacked," in Y's words--possibly not hacked, but overwhelmed with spam from quacks advertising miracle cures like some garlic diet. So the forum became useless and was abandoned. Y thinks an online patient forum could work if someone was dedicated to the web technology side, and ensuring that only authorized patients could use it. (Also, there are "HIPAA," or medical privacy, issues, he says; presumably his former site managed to solve them.)
A point Y insisted on making was that itch should be treated as a disease, not a symptom. It's a major issue. He sees many parallels between itch and pain; itch is now where chronic pain was thirty years ago.
Y also thinks that eczema patients should look to psoriasis as a disease whose patients have been successful in setting up support groups and activism for funding. "But [itch clinics] needsencouragement from the upper levels," he says, meaning the NIH and legislators who have the power to make insurance companies change the incentive model.
Y is a fan of the National Eczema Association. "They're providing a lot of support to atopics," he says. He was able to leverage a small NEA grant into a large NIH one (that's how science funding works--a granting agency will only give you money if someone else has already given you money). I suppose I should be happy that he likes the NEA. He said he only decided to talk to me because I was raising money for them.
In my next post I'll talk about Y's position on alternative medicine. My next post, by the way, may be my last for some time. I need to resolve this trouble I've been having with my neck, and the less time I spend at a computer the better, for the moment.
Showing posts with label itch centers. Show all posts
Showing posts with label itch centers. Show all posts
Sunday, February 6, 2011
Thursday, January 27, 2011
How an "itch center" (or clinic, really) would work
After I wrote the last post, I realized that I should clarify what I mean by "itch center." If you search for the term on Google, you don't turn up much, but I did find one indirect listing for the "Center for the Study of Itch" at Washington University in St. Louis, Missouri. It has something to do with the Washington University Pain Center. Anyway, what I mean by "itch center" is a place that primarily serves patients, rather than a pure research lab. As far as I know there is currently only one such entity in the U.S., Gil Yosipovitch's at Wake Forest University in Winston-Salem, North Carolina. And you can't find a webpage for it. How is a patient supposed to get help?
Martin Steinhoff told me that he plans to establish an itch center at UCSF--a clinic to help patients. He also mentioned, in conjunction with that clinic, that he's putting together a research center. You might be interested to know how these things get planned.
For his clinic, to begin with, Steinhoff would serve as the lead doctor with three residents working under his direction, plus one nurse. In Germany, he says, with such a setup he was able to see 50 patients in a day. At UCSF, he says he wants to think on a bigger scale, so eventually there may be several senior doctors and many residents and nurses.
As I mentioned in the previous post, Steinhoff says that at his Muenster clinic the most important feature was that patients would arrive for diagnosis and spend the next one or two weeks under close supervision so that their treatment could be adjusted according to need. In the US system this can't happen (barring unusual philanthropy)--doctors usually see ambulatory patients only for very short times, and then send them away for 4-6 weeks.
Steinhoff says that he's thought about this--the limitation is frustrating, but he thinks that he could achieve some sort of active modulated treatment by having patients join a self-help group, moderated by the clinic's nurse. The patients could check in to a website or wiki online where the nurse would be available several hours a day to check how people were doing, and in off-hours they could converse with each other in forums. I'm extrapolating here, but I expect his idea is that the patients would lend each other moral support as well as practical advice. It'd be interesting to see this in operation--how much of the forums would consist of comments like "OMG I'm so itchy" or "Just scratched, feels so goooood"? Probably knowing that the conversation was moderated by the nurse would improve the tone.
In Steinhoff's proposed itch research center, he'd again be the director, with, to begin with, two assistant professors in his laboratory. (He's an active research scientist and in fact got his PhD in biology before his MD.) I'd like to visit his laboratory sometime to see how one carries out itch experiments, but I've used up my quota of his valuable time for several months.
* * *
You may have noticed that I am posting less often at the moment. My current target is twice per week. I've been having some back trouble that may have been brought on by my enthusiastic start to blogging--until recently the ergonomics of my home computer setup were terrible, and I'm now at about 75 posts, so that makes about two days' straight worth of typing with bad posture. My physiotherapist has advised me to make several changes to my lifestyle, and seeing as I already spend 8 hours a day in front of a computer at work, it doesn't make sense to overdo it at home.
Martin Steinhoff told me that he plans to establish an itch center at UCSF--a clinic to help patients. He also mentioned, in conjunction with that clinic, that he's putting together a research center. You might be interested to know how these things get planned.
For his clinic, to begin with, Steinhoff would serve as the lead doctor with three residents working under his direction, plus one nurse. In Germany, he says, with such a setup he was able to see 50 patients in a day. At UCSF, he says he wants to think on a bigger scale, so eventually there may be several senior doctors and many residents and nurses.
As I mentioned in the previous post, Steinhoff says that at his Muenster clinic the most important feature was that patients would arrive for diagnosis and spend the next one or two weeks under close supervision so that their treatment could be adjusted according to need. In the US system this can't happen (barring unusual philanthropy)--doctors usually see ambulatory patients only for very short times, and then send them away for 4-6 weeks.
Steinhoff says that he's thought about this--the limitation is frustrating, but he thinks that he could achieve some sort of active modulated treatment by having patients join a self-help group, moderated by the clinic's nurse. The patients could check in to a website or wiki online where the nurse would be available several hours a day to check how people were doing, and in off-hours they could converse with each other in forums. I'm extrapolating here, but I expect his idea is that the patients would lend each other moral support as well as practical advice. It'd be interesting to see this in operation--how much of the forums would consist of comments like "OMG I'm so itchy" or "Just scratched, feels so goooood"? Probably knowing that the conversation was moderated by the nurse would improve the tone.
In Steinhoff's proposed itch research center, he'd again be the director, with, to begin with, two assistant professors in his laboratory. (He's an active research scientist and in fact got his PhD in biology before his MD.) I'd like to visit his laboratory sometime to see how one carries out itch experiments, but I've used up my quota of his valuable time for several months.
* * *
You may have noticed that I am posting less often at the moment. My current target is twice per week. I've been having some back trouble that may have been brought on by my enthusiastic start to blogging--until recently the ergonomics of my home computer setup were terrible, and I'm now at about 75 posts, so that makes about two days' straight worth of typing with bad posture. My physiotherapist has advised me to make several changes to my lifestyle, and seeing as I already spend 8 hours a day in front of a computer at work, it doesn't make sense to overdo it at home.
Tuesday, January 25, 2011
Martin Steinhoff plans largest itch center in the world
Today I met with Martin Steinhoff, a professor of dermatology at the University of California, San Francisco (UCSF). (He's listed as a "professor in residence," but assures me he's here to stay.)
Steinhoff plans over the next 25 years to build the biggest "itch center" in the world at UCSF. Previously he led the itch clinic at Muenster, which he believes is the largest such center in Germany. An itch center is a special clinic with dedicated residents and staff, at which patients are diagnosed, treated, and observed intensively over a period of one to two weeks, and their treatment modulated to get the itch under control.
Steinhoff came to UCSF because he was impressed with the research being done in neuroscience. UCSF is a purely medical and research campus with no undergraduates--it used to be the medical school of UC Berkeley, and although not well known to the public, it is the second largest recipient of NIH funds (presumably after Johns Hopkins in Baltimore). However, he says he is the only itch specialist currently at UCSF, although he works closely with four scientists who study pain, which shares neural pathways with itch.
Steinhoff has been impressed with the can-do, entrepreneurial spirit in California. "Here you have the possibility to build a computer company like Apple in your garage," he says. "In Germany, people expect everything from the government."
However, he prefaced those remarks with ones less likely to be repeated by American politicians. He is frustrated and unimpressed with what passes for a fragmented health care "system" in the US. Because of the power wielded by insurance companies, itch patients in particular receive substandard care. "In Germany, when a patient visits [the itch clinic], they come for one week, get a diagnosis, and we get it under control," he says. Here, you are seen for two minutes--maybe 15, at a university--you get a quick diagnosis and you're told to come back in 6 weeks. There is no time. And because of money, you cannot prescribe the optimal treatment, because of insurance." [This is true for me, actually: my own insurance wouldn't pay for me to attend Steinhoff's proposed clinic.] "
"In the US, insurance wants to prescribe the cheapest topical or systemic steroid," he says, even if the best treatment would be a large dose of (admittedly expensive) nonsedative antihistamines. [A surprise to me, this; I'm not the expert, but I thought antihistamines were not effective. Maybe just the ones I've taken.] His conclusion: "You cannot help patients because of the insurance."
Whatever your political views, you'd have to agree that the point of health care is to help the patient, and from that perspective, the current "system" is broken.
I'll give a few details of Steinhoff's proposed clinic in the next post, and how he plans to work around the limitations. I'd just like to add that he's a little mystified why eczema has such a low profile in the US, while conditions such as psoriasis that, according to him, "have much less effect on quality of life," are well-known. Once he gets his clinic off the ground, it will be only one of two such centers in the US, the other one being Gil Yosipovitch's at Wake Forest University. Two centers for 240 million people in the richest country in the world.
Steinhoff plans over the next 25 years to build the biggest "itch center" in the world at UCSF. Previously he led the itch clinic at Muenster, which he believes is the largest such center in Germany. An itch center is a special clinic with dedicated residents and staff, at which patients are diagnosed, treated, and observed intensively over a period of one to two weeks, and their treatment modulated to get the itch under control.
Steinhoff came to UCSF because he was impressed with the research being done in neuroscience. UCSF is a purely medical and research campus with no undergraduates--it used to be the medical school of UC Berkeley, and although not well known to the public, it is the second largest recipient of NIH funds (presumably after Johns Hopkins in Baltimore). However, he says he is the only itch specialist currently at UCSF, although he works closely with four scientists who study pain, which shares neural pathways with itch.
Steinhoff has been impressed with the can-do, entrepreneurial spirit in California. "Here you have the possibility to build a computer company like Apple in your garage," he says. "In Germany, people expect everything from the government."
However, he prefaced those remarks with ones less likely to be repeated by American politicians. He is frustrated and unimpressed with what passes for a fragmented health care "system" in the US. Because of the power wielded by insurance companies, itch patients in particular receive substandard care. "In Germany, when a patient visits [the itch clinic], they come for one week, get a diagnosis, and we get it under control," he says. Here, you are seen for two minutes--maybe 15, at a university--you get a quick diagnosis and you're told to come back in 6 weeks. There is no time. And because of money, you cannot prescribe the optimal treatment, because of insurance." [This is true for me, actually: my own insurance wouldn't pay for me to attend Steinhoff's proposed clinic.] "
"In the US, insurance wants to prescribe the cheapest topical or systemic steroid," he says, even if the best treatment would be a large dose of (admittedly expensive) nonsedative antihistamines. [A surprise to me, this; I'm not the expert, but I thought antihistamines were not effective. Maybe just the ones I've taken.] His conclusion: "You cannot help patients because of the insurance."
Whatever your political views, you'd have to agree that the point of health care is to help the patient, and from that perspective, the current "system" is broken.
I'll give a few details of Steinhoff's proposed clinic in the next post, and how he plans to work around the limitations. I'd just like to add that he's a little mystified why eczema has such a low profile in the US, while conditions such as psoriasis that, according to him, "have much less effect on quality of life," are well-known. Once he gets his clinic off the ground, it will be only one of two such centers in the US, the other one being Gil Yosipovitch's at Wake Forest University. Two centers for 240 million people in the richest country in the world.
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