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Nursing organizations should comment on DTC genetic testing
On the issue of Direct-to-Consumer genetic testing, nursing organizations like NYSNA and the American Nurses Association can make official statements. Since the FDA re-opened its docket comments on the recent March 8-9 meeting of the Molecular and Clinical Genetics Panel, there is a forum for the FDA to hear official statements from nursing organizations.
Since DTC genetic testing is a patient- and consumer-advocacy issue, I hope that nursing organizations will take the opportunity to let the FDA know that they oppose a "routed through a clinician" level of regulation that would take away Americans' rights to have access to information about their own genes.
The American Medical Association has already let the FDA know its position. The AMA believes all genetic testing should require a doctor's prescription and the results of genetic tests should only be available under a doctor's supervision, for patient safety. However, as various bloggers have pointed out, direct-to-consumer genetic testing has been a reality for several years, and the only studies of the issue have shown no harm to patients. An evidence-based approach to regulation contradicts the AMA's position.
As I have argued in another post, the health risk information provided by genetic testing is non-diagnostic and similar to the health risk information provided by nutritional information. Therefore, a standard of regulation similar to nutrition facts and health claims on food labeling is more appropriate to genetic testing companies than requiring doctor supervision for genetic testing. I hope nursing organizations would take a similar view.
about FDA docket comments
The Food and Drug Administration maintains an independent committee of expert science advisors. This committee's Molecular and Clinical Genetics Panel (MCGP) recently met over a 2-day period to hear presentations about and to discuss DTC genetic testing before making its recommendation to the FDA on regulating DTC testing.
Government agencies solicit official statements, called comments, from interested parties as part of fact-finding missions before making regulatory decisions. These comments are solicited through the federal government's official journal, the Federal Register. The Federal Register publishes an indentification number, called a docket number, and organizations wishing to submit comments use this docket number to tell federal agencies which regulatory decisions they are commenting on. Comments are submitted online and can be read by the public at www.regulations.gov. This website is searchable by docket number.
Comments for the MCGP meeting were solicited under federal docket number "FDA-2011-N-0066," which can be seen at the following web address:
http://www.regulations.gov/#!docketDetail;D=FDA-2011-N-0066
The Federal Register call for comments on the MCGP meeting can be read here (click on the PDF there for a scan of the Federal Register page).
Comments are meant to be made by organizations and institutions with a vested interest in the outcome of the federal regulatory decisions, not by individual citizens. Nursing organizations, which have a vested interest in any regulations affecting patient rights, should submit official comments soon. Individual nurses and health care professionals can send letters to the FDA and to Congress.
read more about DTC genetic testing
Here are some resources for reading more about Direct-to-Consumer genetic testing:
The author of this blog is a registered nurse who works in an ICU in the northeastern United States. You can connect on LinkedIn.
[revised March 13 @5PM]
Since DTC genetic testing is a patient- and consumer-advocacy issue, I hope that nursing organizations will take the opportunity to let the FDA know that they oppose a "routed through a clinician" level of regulation that would take away Americans' rights to have access to information about their own genes.
The American Medical Association has already let the FDA know its position. The AMA believes all genetic testing should require a doctor's prescription and the results of genetic tests should only be available under a doctor's supervision, for patient safety. However, as various bloggers have pointed out, direct-to-consumer genetic testing has been a reality for several years, and the only studies of the issue have shown no harm to patients. An evidence-based approach to regulation contradicts the AMA's position.
As I have argued in another post, the health risk information provided by genetic testing is non-diagnostic and similar to the health risk information provided by nutritional information. Therefore, a standard of regulation similar to nutrition facts and health claims on food labeling is more appropriate to genetic testing companies than requiring doctor supervision for genetic testing. I hope nursing organizations would take a similar view.
about FDA docket comments
The Food and Drug Administration maintains an independent committee of expert science advisors. This committee's Molecular and Clinical Genetics Panel (MCGP) recently met over a 2-day period to hear presentations about and to discuss DTC genetic testing before making its recommendation to the FDA on regulating DTC testing.
Government agencies solicit official statements, called comments, from interested parties as part of fact-finding missions before making regulatory decisions. These comments are solicited through the federal government's official journal, the Federal Register. The Federal Register publishes an indentification number, called a docket number, and organizations wishing to submit comments use this docket number to tell federal agencies which regulatory decisions they are commenting on. Comments are submitted online and can be read by the public at www.regulations.gov. This website is searchable by docket number.
Comments for the MCGP meeting were solicited under federal docket number "FDA-2011-N-0066," which can be seen at the following web address:
http://www.regulations.gov/#!docketDetail;D=FDA-2011-N-0066
The Federal Register call for comments on the MCGP meeting can be read here (click on the PDF there for a scan of the Federal Register page).
Comments are meant to be made by organizations and institutions with a vested interest in the outcome of the federal regulatory decisions, not by individual citizens. Nursing organizations, which have a vested interest in any regulations affecting patient rights, should submit official comments soon. Individual nurses and health care professionals can send letters to the FDA and to Congress.
read more about DTC genetic testing
Here are some resources for reading more about Direct-to-Consumer genetic testing:
- This 23andMe webpage, explains what direct-to-consumer genetic testing is, and how it works.
- The International Society of Nurses in Genetics has released a statement on DTC genetic testing: as noted above, their main concern over DTC testing, the safety of patients, has been shown through evidence not to be a problem!
- Ann Maradiegue testified on behalf of the ANA at the MCGP meeting March 8-9. Although she implied that she supports a "routed through a clinician" standard of regulation as against a lower standard of regulation, she did not state this explicitly. The ANA and other nursing organizations should take this opportunity to undo the damage done by Dr. Maradiegue's testimony and state explicitly their support for regulation without a "routed through a clinician" standard.
- You can read all my posts about DTC testing, in which I lay out the position that consumers need assurances about genetic testing that would parallel the FDA's system of food regulation, not regulations appropriate for potentially dangerous drugs and equipment.
- Genetics lawyer Jennifer Wagner has written an open letter to Congress about FDA over-reach in this area.
- Lawyer Dan Vorhaus provides excellent, if very detailed, coverage of the MCGP meeting and the whole issue of DTC genetic testing
- Geneticist Dan Macarthur comments on the AMA's position
The author of this blog is a registered nurse who works in an ICU in the northeastern United States. You can connect on LinkedIn.
[revised March 13 @5PM]
DTC genetic testing: the issue isn't dead!
According to legal expert Dan Vorhaus, the FDA is going to re-open its site for public comments on Direct-to-Consumer genetic testing as well as hold town hall-style meetings around the country.
This means the issue of DTC testing isn't dead, yet. So get in those e-mails, faxes, letters, and phone calls to the FDA... and to your representatives in Congress!
Find mailing addresses and more information in all my posts on DTC genetic testing. Remember, if you are a health care professional, this a patient and consumer advocacy issue.
This means the issue of DTC testing isn't dead, yet. So get in those e-mails, faxes, letters, and phone calls to the FDA... and to your representatives in Congress!
Find mailing addresses and more information in all my posts on DTC genetic testing. Remember, if you are a health care professional, this a patient and consumer advocacy issue.
DTC testing: mailing addresses, etc
With regard to the recent hulla-baloo about the Food and Drug Administration's panel hearings on Direct-to-Consumer geneic testing, here are some addresses and links you might be interested in if you are planning to write the FDA or Congress.
The Center for Devices and Radiological Health (CDRH) is the division of the FDA that would be responsible for DTC genetic testing. And Office of In Vitro Diagnostic Device Evaluation and Safety (OVID) is the relevant CDRH office. The CDRH director is Jeffrey Shuren. OVID's director is Alberto Gutierrez, and OVID's personalized medicine staff are headed by Elizabeth Mansfield. Use the following to contact FDA staff:
• list of CDRH personnel
• contact info search form.
Dr. Jeffrey Shuren
Director, CDRH
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-5900
Fax 301-847-8510
jeff.shuren@fda.hhs.gov
Nancy Stade
Deputy Director for Policy, CDRH
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-5900
Fax 301-847-8510
nancy.stade@fda.hhs.gov
Alberto Gutierrez
Director of OVID
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring, MD 20993
Phone 301-796-5453
Fax 301-847-8515
alberto.gutierrez@fda.hhs.gov
Elizabeth Mansfield
Director of Personalized Medicine
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring, MD 20993
Phone 301-796-4664
elizabeth.mansfield@fda.hhs.gov
The Commissioner of the Food and Drug Administration is Dr. Margaret Hamburg. She's probably busy, but her chief of staff is Molly Muldoon. There is a list of the commissioner's closest staff here and an address search form here.
Dr. Margaret Hamburg
Commissioner of the FDA
White Oak Office Building 1
10903 New Hampshire Avenue
Silver Spring MD 20993
margaret.hamburg@fda.hhs.gov
Molly Muldoon
Chief of Staff, FDA
White Oak Office Building 1
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-9691
molly.muldoon@fda.hhs.gov
The Medical Devices Advisory Committee are consultants, not government employees or politicians. The Molecular and Clinical Genetics Panel of the MDAC is the group that met recently on March 8-9. The contact information of the Panel members is all listed here.
The FDA is under the Department of Health and Human Services, headed by Secretary of Health and Human Services Kathleen Sebelius.
Kathleen Sebelius
Secretary of Health and Human Services
200 Independence Ave. SW., room 120F
Washington, D.C. 20201
Toll Free: 1-877-696-6775
Kathleen.Sebelius@hhs.gov
The Congressional Committees and Subcommittees most concerned in this matter are probably the House Committee on Energy and Commerce, of which the Subcommittee on Oversight and Investigations called 23andMe to testify last summer, and the House Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies, which deals with the FDA's budget. There is also a House Energy and Commerce Subcommittee on Health. Wikipedia has updated lists of the members and chairpersons of these committees. Use www.House.gov to search for members' contact information.
• House Committee on Energy and Commerce
• House Energy and Commerce Subcommittee on Health
• House Committee on Appropriations
• House Appropriations Subcommittee on Agri...FDA and Related
Don't forget your own Congressional House Representative! Go to House.gov to learn how to write your representative.
There are also Senate Committees and Subcommittees that parallel the ones in the House as well as your own Senators.
what to write
There are multiple websites (Google 'em) that will advise you how to write a petitionary letter to the government. Please consult them.
In addressing the matter of DTC genetic testing, please be clear that you are strongly against having regulations that would require genetic testing and genome sequencing be prescribed by a health care provider, as well as regulations that would require these test results be released only to a health care provider. Dan Vorhaus' term for this type of regulation is "gatekeeper." The FDA's phrase for this is testing "routed through a clinician."
Work in President Obama's January 18 statement if you are clever.
Here's the letter I intend to send to the FDA. It can be tweaked a little for Congress as well... it's probably too long...
Dear __________
Following the FDA's March 8-9 advisory panel meetings on Direct-to-Consumer (DTC) Genetic Testing, I am writing to urge the FDA not to adopt a standard of regulation that would require a consumer's genetic information be "routed through a clinician." This requirement is unnecessary, unethical, and not in the national interest.
DTC genetic testing is already being done in the United States, yet no data exist to suggest that there have been adverse consequences from its use. Questionable anecdotes are not an acceptable reason to adopt a high level of regulation. Valid empirical data showing adverse consequences should be a minimum requirement before adopting such a strict regulatory scheme.
Curtailing an American's freedom to his or her own genetic information in favor of an untrained class of professionals is unethical. As a health care professional, I can attest that neither I nor those I work with have more than a cursory education in genetics. The situation is more problematic when the advisory panel and FDA itself are heavily populated by the same class of professionals that will benefit from the regulations.
The end of DTC genetic testing will end many incentives for U.S. innovation in this area, but it will not stop consumers from using these services as they look overseas to foreign companies. Strict regulation of genetic testing will result in sending more US dollars and jobs to China and India in exchange for no appreciable benefit.
Again, speaking as a consumer, a health care professional, and an American, I strongly urge the FDA: do not adopt a regulatory approach that would be economically stifling, restrict consumer choice, and provide no consumer safety. Do not require clinician intervention in Direct-to-Consumer genetic testing.
Thank you.
[this post was revised March 13 @ 10AM]
The Center for Devices and Radiological Health (CDRH) is the division of the FDA that would be responsible for DTC genetic testing. And Office of In Vitro Diagnostic Device Evaluation and Safety (OVID) is the relevant CDRH office. The CDRH director is Jeffrey Shuren. OVID's director is Alberto Gutierrez, and OVID's personalized medicine staff are headed by Elizabeth Mansfield. Use the following to contact FDA staff:
• list of CDRH personnel
• contact info search form.
Dr. Jeffrey Shuren
Director, CDRH
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-5900
Fax 301-847-8510
jeff.shuren@fda.hhs.gov
Nancy Stade
Deputy Director for Policy, CDRH
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-5900
Fax 301-847-8510
nancy.stade@fda.hhs.gov
Alberto Gutierrez
Director of OVID
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring, MD 20993
Phone 301-796-5453
Fax 301-847-8515
alberto.gutierrez@fda.hhs.gov
Elizabeth Mansfield
Director of Personalized Medicine
White Oak Office Building 66
10903 New Hampshire Avenue
Silver Spring, MD 20993
Phone 301-796-4664
elizabeth.mansfield@fda.hhs.gov
The Commissioner of the Food and Drug Administration is Dr. Margaret Hamburg. She's probably busy, but her chief of staff is Molly Muldoon. There is a list of the commissioner's closest staff here and an address search form here.
Dr. Margaret Hamburg
Commissioner of the FDA
White Oak Office Building 1
10903 New Hampshire Avenue
Silver Spring MD 20993
margaret.hamburg@fda.hhs.gov
Molly Muldoon
Chief of Staff, FDA
White Oak Office Building 1
10903 New Hampshire Avenue
Silver Spring MD 20993
Phone 301-796-9691
molly.muldoon@fda.hhs.gov
The Medical Devices Advisory Committee are consultants, not government employees or politicians. The Molecular and Clinical Genetics Panel of the MDAC is the group that met recently on March 8-9. The contact information of the Panel members is all listed here.
The FDA is under the Department of Health and Human Services, headed by Secretary of Health and Human Services Kathleen Sebelius.
Kathleen Sebelius
Secretary of Health and Human Services
200 Independence Ave. SW., room 120F
Washington, D.C. 20201
Toll Free: 1-877-696-6775
Kathleen.Sebelius@hhs.gov
The Congressional Committees and Subcommittees most concerned in this matter are probably the House Committee on Energy and Commerce, of which the Subcommittee on Oversight and Investigations called 23andMe to testify last summer, and the House Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies, which deals with the FDA's budget. There is also a House Energy and Commerce Subcommittee on Health. Wikipedia has updated lists of the members and chairpersons of these committees. Use www.House.gov to search for members' contact information.
• House Committee on Energy and Commerce
• House Energy and Commerce Subcommittee on Health
• House Committee on Appropriations
• House Appropriations Subcommittee on Agri...FDA and Related
Don't forget your own Congressional House Representative! Go to House.gov to learn how to write your representative.
There are also Senate Committees and Subcommittees that parallel the ones in the House as well as your own Senators.
what to write
There are multiple websites (Google 'em) that will advise you how to write a petitionary letter to the government. Please consult them.
- Keep your letter/fax to one page only.
- Keep your e-mails short.
- Be polite.
- State your purpose clearly and immediately.
- Focus on only a few important points.
- Give supporting evidence if you can (but not a page of references).
- Use proper formatting and proofread.
In addressing the matter of DTC genetic testing, please be clear that you are strongly against having regulations that would require genetic testing and genome sequencing be prescribed by a health care provider, as well as regulations that would require these test results be released only to a health care provider. Dan Vorhaus' term for this type of regulation is "gatekeeper." The FDA's phrase for this is testing "routed through a clinician."
Work in President Obama's January 18 statement if you are clever.
Here's the letter I intend to send to the FDA. It can be tweaked a little for Congress as well... it's probably too long...
Dear __________
Following the FDA's March 8-9 advisory panel meetings on Direct-to-Consumer (DTC) Genetic Testing, I am writing to urge the FDA not to adopt a standard of regulation that would require a consumer's genetic information be "routed through a clinician." This requirement is unnecessary, unethical, and not in the national interest.
DTC genetic testing is already being done in the United States, yet no data exist to suggest that there have been adverse consequences from its use. Questionable anecdotes are not an acceptable reason to adopt a high level of regulation. Valid empirical data showing adverse consequences should be a minimum requirement before adopting such a strict regulatory scheme.
Curtailing an American's freedom to his or her own genetic information in favor of an untrained class of professionals is unethical. As a health care professional, I can attest that neither I nor those I work with have more than a cursory education in genetics. The situation is more problematic when the advisory panel and FDA itself are heavily populated by the same class of professionals that will benefit from the regulations.
The end of DTC genetic testing will end many incentives for U.S. innovation in this area, but it will not stop consumers from using these services as they look overseas to foreign companies. Strict regulation of genetic testing will result in sending more US dollars and jobs to China and India in exchange for no appreciable benefit.
Again, speaking as a consumer, a health care professional, and an American, I strongly urge the FDA: do not adopt a regulatory approach that would be economically stifling, restrict consumer choice, and provide no consumer safety. Do not require clinician intervention in Direct-to-Consumer genetic testing.
Thank you.
[this post was revised March 13 @ 10AM]
Worse than godzilla
When disaster hit Haiti, everyone heaved to, and I tried to travel down there to lend a hand. In the end, I could only blog about it from home. Disappointing. Now that an earthquake and tsunami have hit Japan, do we feel any corresponding sense of sympathy?
Looking at this photo of emergency medical services at work in Japan and others from the BBC, I was struck that my own reaction was actually that "this is what Japan is like" and "oh, another earthquake in Japan: it must be annoying for them."
This is an odd reaction, part of what I think of as the 'godzilla phenomenon'--Japan as the beautiful land of natural disasters. I realize that I think of the Japanese as something like the Eloi from Wells' Time Machine. That is, they live a charmed existence in a sort of Eden, except that they occassionally fall prey to firestorms, nuclear disaster, earthquakes--the metaphorical godzilla. I realize this isn't fair to the Japanese
This impression is no doubt supported by the fact that Japanese disasters provide us with no images of wailing and nashing of teeth. A video of a damaged store in Japan shows workers calmly cleaning up debris while a man goes about his business paying for groceries at the counter. In Haiti, it would have been distraught, helpless owners and looters.
Google has an amazing resource called Google Crisis Response. Finally. After 9-11, I tried to convince my Senators that the US government should have a crisis response web presence. My idea was that in the event of, say, Hurricane Katrina, the government would immediately put up a website at http://www.katrina.gov and collaborate with news agencies to provide ongoing updated information about casualties, volunteering, donating money, etc. To me, this was a no-brainer as it would clear up a lot of confusion. During Haiti relief, a web scam saying airlines were providing free tickets to those wishing to volunteer in Haiti almost took in some co-workers of mine.
The most amazing thing about the Google Crisis Response is their PersonFinder app, which you can imbed in your website. Look for "John," and you'll see how it works. Cool.
Looking at this photo of emergency medical services at work in Japan and others from the BBC, I was struck that my own reaction was actually that "this is what Japan is like" and "oh, another earthquake in Japan: it must be annoying for them."This is an odd reaction, part of what I think of as the 'godzilla phenomenon'--Japan as the beautiful land of natural disasters. I realize that I think of the Japanese as something like the Eloi from Wells' Time Machine. That is, they live a charmed existence in a sort of Eden, except that they occassionally fall prey to firestorms, nuclear disaster, earthquakes--the metaphorical godzilla. I realize this isn't fair to the Japanese
This impression is no doubt supported by the fact that Japanese disasters provide us with no images of wailing and nashing of teeth. A video of a damaged store in Japan shows workers calmly cleaning up debris while a man goes about his business paying for groceries at the counter. In Haiti, it would have been distraught, helpless owners and looters.
Google has an amazing resource called Google Crisis Response. Finally. After 9-11, I tried to convince my Senators that the US government should have a crisis response web presence. My idea was that in the event of, say, Hurricane Katrina, the government would immediately put up a website at http://www.katrina.gov and collaborate with news agencies to provide ongoing updated information about casualties, volunteering, donating money, etc. To me, this was a no-brainer as it would clear up a lot of confusion. During Haiti relief, a web scam saying airlines were providing free tickets to those wishing to volunteer in Haiti almost took in some co-workers of mine.
The most amazing thing about the Google Crisis Response is their PersonFinder app, which you can imbed in your website. Look for "John," and you'll see how it works. Cool.
Write Congress: genetic testing
Here is an urgent health issue that I encourage you to write your congressman or congresswoman about...
What's going on?
There was anger and cross words yesterday in the small corner of the web devoted to genetics. The hurt feelings were over the possible end of "direct-to-consumer genetic testing" after a meeting of some advisers to the federal government's Food and Drug Administration. The people concerned are mostly nerdy science types. As health care workers, should we be concerned? Should we get involved? Yes! Let me explain...
Direct-to-consumer genetic testing (known as DTC genetic testing), refers to companies like 23andMe that will take a sample of your saliva, analyze your genetic code, and then give you information about your ethnic heritage and your risks for developing certain health problems. (23andMe was started by the wife of Google co-founder Sergey Brin. As related in WIRED magazine, Sergey has a genetic risk for Parkinson's Disease, and the couple would like to help Sergey and others with his condition to find better ways to deal with their risks.)
What's the problem?
DTC genetic testing is a recent development, so it hasn't been regulated by the federal government yet. The government's Food and Drug Administration (FDA) thinks it should be regulated as a "medical device," which according to their definition includes anything used in medical diagnoses. But there are different ways that the FDA could regulate DTC genetic testing--it could simply make sure that tests meet minimum quality standards, or it could ban testing completely. If it banned DTC genetic testing completely, that would mean that genetic tests could only be performed with a doctor's prescription.
To hear the opinions of businesses and other interested groups, the FDA has a committee of advisers made up of doctors, researchers, patients, etc. This committee recently met on March 8-9 in a hotel outside Washington, DC.
We don't know what they recommended yet, but one expert who has been following this issue thinks that the committee of advisers will recommend banning DTC genetic testing completely. If the FDA does that, the only way to save DTC genetic testing would be to influence the FDA and Congress to change its mind.
Why should I care?
DTC genetic testing provides consumers (that's you and me!) with information about our own genetic code and our genetic risks for developing certain diseases. In addition to the fact that consumers should have a right to obtain their own genetic code without the "official approval" of a doctor, there is information in your genetic code that might help you to change how you eat, how much exercise you get, or the hobbies you choose. In short, it can help you get the most healthy years out of life.
As I mentioned in a previous post, DTC genetic testing is not an addictive drug like morphine or a dangerous medical procedure like irradiating cancer cells. Since the purpose of the FDA is to protect consumers from these things, it doesn't make sense to ban the testing completely. It makes more sense just to ensure that companies meet quality standards and are truthful with their customers. This is how the FDA already regulates food. Don't you think nutrition labels work pretty well?
Why would doctors want the FDA to ban DTC genetic testing?
The doctors' lobbying organization, the American Medical Association (AMA), has told the FDA it thinks that consumers (that's you and me!) should only have access to their own genetic code if a doctor approves. This is supposed to protect you from committing suicide or doing some other stupid thing if you find out you are at risk for Parkinson's or any other disease. But it also means they get $$$$$$ and status and power because you will have to schedule a doctor's visit in order to get any information that you can already get--right now--simply by logging onto the 23andMe website. Remember, always follow the money!!
(Also remember, DTC genetic testing is already going on. Has it been causing you a lot of grief lately?)
Wouldn't having access to my genetic code make me my own doctor?
No! Since you still can't prescribe medicine for yourself or order other treatments, DTC genetic testing does not cut out the doctor. It simply means that you can have access to your own genetic information. What you choose to do with it is up to you. If you want to show it to your doctor, you can do that. Remember, it's yours!
Okay, I get it. So what do I do?
Well, people in the know think the FDA's decision has already been made, but that doesn't mean the FDA can't change its mind. But the only way it will change is if the FDA and Congress hear your voice. Otherwise, the only voice they will hear is the AMA telling them it is too dangerous for you to get your own genetic code.
You can contact by e-mail, letter, or phone. You can contact the FDA. You can contact the FDA's committee of advisers. You can contact Congress. You can write to all three!!! Then tell your friends and co-workers to do the same.
Okay, but who do I contact?
First you have to know all the players. But don't worry, it's not too complicated.
The Food and Drug Administration gets paid for by Congress. Congress is divided into the House and Senate, and each of those is further divided into committees and subcommittees. All these committees and subcommittees are needed because the government is sooooo big. No, really.
Anyhow, the subcommittees that control the FDA's budget are called the "Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies". There's one of these for the House and one for the Senate. Each subcommittee is made up of about 10 members.
There's also the committees called Energy and Commerce. These relate to DTC genetic testing because Energy and Commerce regulates trade. The most relevant subcommittees are the Subcommittee on Health and the Subcommittee on Oversight and Investigations. The Subcommittee on Oversight and Investigations conducts investigations into questionable business practices. This is the part of Congress that first asked why DTC genetic testing was unregulated.
Then there's the FDA, which is composed of various Center. The one that would control genetic testing is called the Center for Devices and Radiological Health (CDRH). You want to contact Dr. Margaret Hamburg, who is the head honcho for the whole FDA, but she's really busy. You could also contact the head of CDRH.
Finally, there's that committee of advisers to the FDA. It's called the Medical Devices Advisory Committee. And it is further divided into subcommittees called panels. We want the panel called Molecular and Clinical Genetics Panel.
Woah! That's a lot of people!
Just hold on... Here's a list. Start at the top and do as many as you can. Don't sweat it.
contact information and what to write
[revised]: Go to this other post for mailing addresses and advice on what to write.
What's going on?
There was anger and cross words yesterday in the small corner of the web devoted to genetics. The hurt feelings were over the possible end of "direct-to-consumer genetic testing" after a meeting of some advisers to the federal government's Food and Drug Administration. The people concerned are mostly nerdy science types. As health care workers, should we be concerned? Should we get involved? Yes! Let me explain...
Direct-to-consumer genetic testing (known as DTC genetic testing), refers to companies like 23andMe that will take a sample of your saliva, analyze your genetic code, and then give you information about your ethnic heritage and your risks for developing certain health problems. (23andMe was started by the wife of Google co-founder Sergey Brin. As related in WIRED magazine, Sergey has a genetic risk for Parkinson's Disease, and the couple would like to help Sergey and others with his condition to find better ways to deal with their risks.)What's the problem?
DTC genetic testing is a recent development, so it hasn't been regulated by the federal government yet. The government's Food and Drug Administration (FDA) thinks it should be regulated as a "medical device," which according to their definition includes anything used in medical diagnoses. But there are different ways that the FDA could regulate DTC genetic testing--it could simply make sure that tests meet minimum quality standards, or it could ban testing completely. If it banned DTC genetic testing completely, that would mean that genetic tests could only be performed with a doctor's prescription.
To hear the opinions of businesses and other interested groups, the FDA has a committee of advisers made up of doctors, researchers, patients, etc. This committee recently met on March 8-9 in a hotel outside Washington, DC.
We don't know what they recommended yet, but one expert who has been following this issue thinks that the committee of advisers will recommend banning DTC genetic testing completely. If the FDA does that, the only way to save DTC genetic testing would be to influence the FDA and Congress to change its mind.
Why should I care?
DTC genetic testing provides consumers (that's you and me!) with information about our own genetic code and our genetic risks for developing certain diseases. In addition to the fact that consumers should have a right to obtain their own genetic code without the "official approval" of a doctor, there is information in your genetic code that might help you to change how you eat, how much exercise you get, or the hobbies you choose. In short, it can help you get the most healthy years out of life.
As I mentioned in a previous post, DTC genetic testing is not an addictive drug like morphine or a dangerous medical procedure like irradiating cancer cells. Since the purpose of the FDA is to protect consumers from these things, it doesn't make sense to ban the testing completely. It makes more sense just to ensure that companies meet quality standards and are truthful with their customers. This is how the FDA already regulates food. Don't you think nutrition labels work pretty well?
Why would doctors want the FDA to ban DTC genetic testing?
The doctors' lobbying organization, the American Medical Association (AMA), has told the FDA it thinks that consumers (that's you and me!) should only have access to their own genetic code if a doctor approves. This is supposed to protect you from committing suicide or doing some other stupid thing if you find out you are at risk for Parkinson's or any other disease. But it also means they get $$$$$$ and status and power because you will have to schedule a doctor's visit in order to get any information that you can already get--right now--simply by logging onto the 23andMe website. Remember, always follow the money!!
(Also remember, DTC genetic testing is already going on. Has it been causing you a lot of grief lately?)
Wouldn't having access to my genetic code make me my own doctor?
No! Since you still can't prescribe medicine for yourself or order other treatments, DTC genetic testing does not cut out the doctor. It simply means that you can have access to your own genetic information. What you choose to do with it is up to you. If you want to show it to your doctor, you can do that. Remember, it's yours!
Okay, I get it. So what do I do?
Well, people in the know think the FDA's decision has already been made, but that doesn't mean the FDA can't change its mind. But the only way it will change is if the FDA and Congress hear your voice. Otherwise, the only voice they will hear is the AMA telling them it is too dangerous for you to get your own genetic code.
You can contact by e-mail, letter, or phone. You can contact the FDA. You can contact the FDA's committee of advisers. You can contact Congress. You can write to all three!!! Then tell your friends and co-workers to do the same.
Okay, but who do I contact?
First you have to know all the players. But don't worry, it's not too complicated.
The Food and Drug Administration gets paid for by Congress. Congress is divided into the House and Senate, and each of those is further divided into committees and subcommittees. All these committees and subcommittees are needed because the government is sooooo big. No, really.
Anyhow, the subcommittees that control the FDA's budget are called the "Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies". There's one of these for the House and one for the Senate. Each subcommittee is made up of about 10 members.
There's also the committees called Energy and Commerce. These relate to DTC genetic testing because Energy and Commerce regulates trade. The most relevant subcommittees are the Subcommittee on Health and the Subcommittee on Oversight and Investigations. The Subcommittee on Oversight and Investigations conducts investigations into questionable business practices. This is the part of Congress that first asked why DTC genetic testing was unregulated.
Then there's the FDA, which is composed of various Center. The one that would control genetic testing is called the Center for Devices and Radiological Health (CDRH). You want to contact Dr. Margaret Hamburg, who is the head honcho for the whole FDA, but she's really busy. You could also contact the head of CDRH.
Finally, there's that committee of advisers to the FDA. It's called the Medical Devices Advisory Committee. And it is further divided into subcommittees called panels. We want the panel called Molecular and Clinical Genetics Panel.
Woah! That's a lot of people!
Just hold on... Here's a list. Start at the top and do as many as you can. Don't sweat it.
contact information and what to write
[revised]: Go to this other post for mailing addresses and advice on what to write.
Genetics : doctors :: calories : ??????
Do you like our nation's food labels? Do you find them a trustworthy and convenient way to know about the health content of your food?
What if there were no food labels and you had to go to a Registered Dietitian (RD) to find out about the health value of your food? What if you had to make a $200 appointment with an RD to find out how much carb, fat, and protein was in the food you bought at the grocery store and what implications this could have for your health? Would you feel that this appointment with an RD was really protecting you from harmful choices or protecting the registered dietitians' income?
Right now,our Congress the FDA is trying to decide how the FDA should regulate genetic testing. If we don't tell them what we want, we could end up with the genetic equivalent of having to pay an RD to find out how much protein is in our steak.
You might be thinking, "well, how come we don't have to pay a health care professional to tell us about the health value of our food?" Wouldn't that be a little silly? Diet and health information is broadcast in the news, on posters in stores and hospitals, on advertisements for food, taught in schools... the information is everywhere.
The difference between food and genetics is that everyone basically knows the risks of eating unhealthy food, but almost nobody knows the risks of having genes that predispose you to diseases. The American Medical Association (AMA) is tellingCongress the FDA that the only way to deal with Americans' lack of knowledge about genetics is to force them to pay doctors to get information about their own genes. But this isn't the only option...
In the old days, when the public lacked important information, the government would engage in a big "public health education campaign" and encourage doctors, nurses, teachers, journalists, and anyone else they could think of to get the word out.
And to make sure companies didn't lie to consumers, the FDA would monitor and regulate the labels on products, not create a class of professionals to act as gatekeepers to the product.
There's no reason these solutions can't work today and work with genetics. As a consumer, you don't need to know the chemistry of stearic acid to know about the health value of fats, and you don't need to know all about "RNA transcription" to know about the health impact of your genes.
I tend to be a libertarian, but I like our food labels. Food labeling increased the size and power of the federal government, but it also made a more open and transparent society where consumers have better ability to make decisions. I support people who want Direct-to-Consumer genetic testing companies to give accurate and useful information to their customers, but I don't need the FDA to shut them down to feel safe.
====================================
[Updated March 11 at 3pm]:
At Razib Khan's site, commenter SJ, who says he is a doctor, criticizes this post. Below are his criticisms and my response:
SJ Says:
March 9th, 2011 at 9:34 pm
Chris, I think it’s a bad analogy. If your mother had a lump in her breast, would you send the biopsy to an unregulated DTC company to determine if it were benign or malignant? “Genes”, when used to provide medical services, are no different in this respect from “tissues”. We live in a democracy, and if people would prefer to do that, so be it and the laws should change. Personally, I think it’s potentially harmful to the consumer, and the regulation helps more than it hurts.
---------------------------------------------
Chris Says:
March 9th, 2011 at 11:21 pm
“If your mother had a lump in her breast, would you send the biopsy to an unregulated DTC company to determine if it were benign or malignant?”
SJ,
Two responses:
(1) This is a false dichotomy. The issue isn’t whether DTC companies should be regulated but how. Should the regulation be like “the consumer can’t use this unless an MD approves” or “the consumer requires assurance that the companies’ claims are truthful”? Nobody is arguing in favor of “back-alley genetic testing”.
(2) Your question has nothing to do with DTC company genomics. You are talking about a medical diagnosis for an acute condition. 23andMe et al. is providing non-diagnostic information about possible future risks.
-----------------------------------------
SJ Says:
March 10th, 2011 at 8:05 am
To Chris
Interrogating information from a breast mass versus DNA from epithelial cells is not so different. In each case, we are using an individual’s biologic material to inform us about that person’s health. The definitions of”diagnosing” and “acute” are less clear than you think…many genetic disorders can be diagnosed by simple tests, and information gained from these tests has the potential inform about real disease risks, just like any other medical test, biopsies included.
I actually would have no problem with anything these DTC outfits are doing if they offered no interpretation, had no advertising claiming to offer you information on “health and disease”, and did not put relative risks in big, bold numbers next to disease names. But then they wouldn’t really have much of a business model, would they? The companies exist to make money, and they overstate and mislead as much as they can get away with to get more customers. As far as I know, no one makes you pay for nutrition label information. When 23andme starts giving away genotype information for free, we can consider that an apt analogy. And I would like to see the average person try to read their SNP data to parse what it means. Maybe you are well versed in genetics and don’t need a “RD” to intepret, but that’s not true for the vast majority of users of these services.
And yes, eventually someone will do something based on the information form these services that will cause them to get hurt. Not very likely, but it will happen at some point. No amount of token disclaimers should absolve these services from the responsibility to provide accurate information in a medically relevant manner, especially if they are portraying it as such implicitly.
----------------------------
Chris Says:
March 11th, 2011 at 8:18 am
SJ,
“As far as I know, no one makes you pay for nutrition label information. When 23andme starts giving away genotype information for free, we can consider that an apt analogy.”
I think you are not understanding the point of my post on food labels. I am not equating food labels to 23andMe’s interpretations*. I am equating them to the SNP data. It’s an important distinction. My point is that genetic information seems confusing/medical/magical to some people because nobody is used to it. At some future point in time when people get genetics in school starting at a young age, nobody will think it is more odd to evaluate their own genetic code vis-a-vis health risk than people today think it odd to evaluate food labels vis-a-vis health risk–that is, health risk that they know about because the information has percolated through the culture.
Now, it is true that 23andMe is making you pay for the equivalent of knowing the nutrient content of your steak. HOWEVER, important distinctions are that (1) the technology employed by 23andMe is not readily available to the consumer and (2) the genetic information is specific, while food labels are based on averages. Imagine if (1) the technology needed to know the nutrient content of food was new and expensive or (2) a new technology was created that allowed the consumer to know the nutrient content of the specific steak he was buying rather than an average steak. In this case, there are people who would pay a premium to get this information. Would the FDA be justified in controlling these technologies any more than they control our knowledge of food labels today? No!!!
It is important to remember that one is not paying 23andMe to interpret data but to produce data.
Let me repeat that…
One is not paying 23andMe to interpret data!
23andMe is selling a whole package the base of which is creating the SNP data. The interpretation is only there because the information about health risk has not yet “percolated through the culture.” Yes, it is true that the interpretation is attracting customers, but it is not the basis of the business model. If it were, they would advertise differently, as in “send us your SNPs from other companies and we will use our proprietary statistical methods to tell you what your TRUE risks.” They aren’t doing this (although this is the AMA’s business model!!). At some future point in time, everyone will have their genome sequenced, and the fact that 23andMe is only testing certain SNPs will look like the quaintness of early cholesterol analysis technology, not the quaintness of 18th century doctors interpreting urine.
* If anything, at the current time, 23andMe’s interpretations are more analogous to Cheerios’ claim that it is “heart-healthy.” The FDA has a system for evaluating claims like this rather than disallowing them altogether. That would be more appropriate for DTC genetic testing than shutting down the industry.
“In each case, we are using an individual’s biologic material to inform us about that person’s health.”
You’re telling us that identifying active, ongoing expression at the cellular level is the same as defining statistical risk. So, a woman has a breast lump. You biopsy the breast lump and also send a non-lump sample to find BRCA data. The information from these two tests is close enough in your eyes to call them both diagnoses?
“And yes, eventually someone will do something based on the information from these services that will cause them to get hurt.”
So what? If a doctor diagnoses a patient with Parkinson’s and the patient commits suicide, do we hold the doctor responsible? What if the diagnosis was in error? Do we hold the doctor responsible then? No, only if the doctor recommends a wrong and hurtful course of action in response to a diagnosis.
As bloggers pointed out in response to Nancy Wexler’s presentation at the MCGP meeting, there is no data showing a pattern of harm from DTC genetic testing, and this is the only standard from which harm should be inferred. Having to argue this to a doctor is exasperating!!
What if there were no food labels and you had to go to a Registered Dietitian (RD) to find out about the health value of your food? What if you had to make a $200 appointment with an RD to find out how much carb, fat, and protein was in the food you bought at the grocery store and what implications this could have for your health? Would you feel that this appointment with an RD was really protecting you from harmful choices or protecting the registered dietitians' income?Right now,
You might be thinking, "well, how come we don't have to pay a health care professional to tell us about the health value of our food?" Wouldn't that be a little silly? Diet and health information is broadcast in the news, on posters in stores and hospitals, on advertisements for food, taught in schools... the information is everywhere.
The difference between food and genetics is that everyone basically knows the risks of eating unhealthy food, but almost nobody knows the risks of having genes that predispose you to diseases. The American Medical Association (AMA) is telling
In the old days, when the public lacked important information, the government would engage in a big "public health education campaign" and encourage doctors, nurses, teachers, journalists, and anyone else they could think of to get the word out.
And to make sure companies didn't lie to consumers, the FDA would monitor and regulate the labels on products, not create a class of professionals to act as gatekeepers to the product.There's no reason these solutions can't work today and work with genetics. As a consumer, you don't need to know the chemistry of stearic acid to know about the health value of fats, and you don't need to know all about "RNA transcription" to know about the health impact of your genes.
I tend to be a libertarian, but I like our food labels. Food labeling increased the size and power of the federal government, but it also made a more open and transparent society where consumers have better ability to make decisions. I support people who want Direct-to-Consumer genetic testing companies to give accurate and useful information to their customers, but I don't need the FDA to shut them down to feel safe.
====================================
[Updated March 11 at 3pm]:
At Razib Khan's site, commenter SJ, who says he is a doctor, criticizes this post. Below are his criticisms and my response:
SJ Says:
March 9th, 2011 at 9:34 pm
Chris, I think it’s a bad analogy. If your mother had a lump in her breast, would you send the biopsy to an unregulated DTC company to determine if it were benign or malignant? “Genes”, when used to provide medical services, are no different in this respect from “tissues”. We live in a democracy, and if people would prefer to do that, so be it and the laws should change. Personally, I think it’s potentially harmful to the consumer, and the regulation helps more than it hurts.
---------------------------------------------
Chris Says:
March 9th, 2011 at 11:21 pm
“If your mother had a lump in her breast, would you send the biopsy to an unregulated DTC company to determine if it were benign or malignant?”
SJ,
Two responses:
(1) This is a false dichotomy. The issue isn’t whether DTC companies should be regulated but how. Should the regulation be like “the consumer can’t use this unless an MD approves” or “the consumer requires assurance that the companies’ claims are truthful”? Nobody is arguing in favor of “back-alley genetic testing”.
(2) Your question has nothing to do with DTC company genomics. You are talking about a medical diagnosis for an acute condition. 23andMe et al. is providing non-diagnostic information about possible future risks.
-----------------------------------------
SJ Says:
March 10th, 2011 at 8:05 am
To Chris
Interrogating information from a breast mass versus DNA from epithelial cells is not so different. In each case, we are using an individual’s biologic material to inform us about that person’s health. The definitions of”diagnosing” and “acute” are less clear than you think…many genetic disorders can be diagnosed by simple tests, and information gained from these tests has the potential inform about real disease risks, just like any other medical test, biopsies included.
I actually would have no problem with anything these DTC outfits are doing if they offered no interpretation, had no advertising claiming to offer you information on “health and disease”, and did not put relative risks in big, bold numbers next to disease names. But then they wouldn’t really have much of a business model, would they? The companies exist to make money, and they overstate and mislead as much as they can get away with to get more customers. As far as I know, no one makes you pay for nutrition label information. When 23andme starts giving away genotype information for free, we can consider that an apt analogy. And I would like to see the average person try to read their SNP data to parse what it means. Maybe you are well versed in genetics and don’t need a “RD” to intepret, but that’s not true for the vast majority of users of these services.
And yes, eventually someone will do something based on the information form these services that will cause them to get hurt. Not very likely, but it will happen at some point. No amount of token disclaimers should absolve these services from the responsibility to provide accurate information in a medically relevant manner, especially if they are portraying it as such implicitly.
----------------------------
Chris Says:
March 11th, 2011 at 8:18 am
SJ,
“As far as I know, no one makes you pay for nutrition label information. When 23andme starts giving away genotype information for free, we can consider that an apt analogy.”
I think you are not understanding the point of my post on food labels. I am not equating food labels to 23andMe’s interpretations*. I am equating them to the SNP data. It’s an important distinction. My point is that genetic information seems confusing/medical/magical to some people because nobody is used to it. At some future point in time when people get genetics in school starting at a young age, nobody will think it is more odd to evaluate their own genetic code vis-a-vis health risk than people today think it odd to evaluate food labels vis-a-vis health risk–that is, health risk that they know about because the information has percolated through the culture.
Now, it is true that 23andMe is making you pay for the equivalent of knowing the nutrient content of your steak. HOWEVER, important distinctions are that (1) the technology employed by 23andMe is not readily available to the consumer and (2) the genetic information is specific, while food labels are based on averages. Imagine if (1) the technology needed to know the nutrient content of food was new and expensive or (2) a new technology was created that allowed the consumer to know the nutrient content of the specific steak he was buying rather than an average steak. In this case, there are people who would pay a premium to get this information. Would the FDA be justified in controlling these technologies any more than they control our knowledge of food labels today? No!!!
It is important to remember that one is not paying 23andMe to interpret data but to produce data.
Let me repeat that…
One is not paying 23andMe to interpret data!
23andMe is selling a whole package the base of which is creating the SNP data. The interpretation is only there because the information about health risk has not yet “percolated through the culture.” Yes, it is true that the interpretation is attracting customers, but it is not the basis of the business model. If it were, they would advertise differently, as in “send us your SNPs from other companies and we will use our proprietary statistical methods to tell you what your TRUE risks.” They aren’t doing this (although this is the AMA’s business model!!). At some future point in time, everyone will have their genome sequenced, and the fact that 23andMe is only testing certain SNPs will look like the quaintness of early cholesterol analysis technology, not the quaintness of 18th century doctors interpreting urine.
* If anything, at the current time, 23andMe’s interpretations are more analogous to Cheerios’ claim that it is “heart-healthy.” The FDA has a system for evaluating claims like this rather than disallowing them altogether. That would be more appropriate for DTC genetic testing than shutting down the industry.
“In each case, we are using an individual’s biologic material to inform us about that person’s health.”
You’re telling us that identifying active, ongoing expression at the cellular level is the same as defining statistical risk. So, a woman has a breast lump. You biopsy the breast lump and also send a non-lump sample to find BRCA data. The information from these two tests is close enough in your eyes to call them both diagnoses?
“And yes, eventually someone will do something based on the information from these services that will cause them to get hurt.”
So what? If a doctor diagnoses a patient with Parkinson’s and the patient commits suicide, do we hold the doctor responsible? What if the diagnosis was in error? Do we hold the doctor responsible then? No, only if the doctor recommends a wrong and hurtful course of action in response to a diagnosis.
As bloggers pointed out in response to Nancy Wexler’s presentation at the MCGP meeting, there is no data showing a pattern of harm from DTC genetic testing, and this is the only standard from which harm should be inferred. Having to argue this to a doctor is exasperating!!
Genetics is not 'snake oil'
Reading an article on today's Congressional hearings about direct-to-consumer (DTC) genetic testing, it strikes me that Congressmen are using phrases like "snake oil" and "snake oil salesmen" to describe genetic testing:
Despite a clear range in testing and business practices... the term “snake oil” was repeatedly invoked to describe all DTC genetic tests.This is a problem. Reporting from these hearings could easily leave the impression that Congress found genetic testing was the equivalent of snake oil. While the government's investigators did find disturbing business practices in only some DTC genetic testing companies, their hearings have no relationship to the validity of genetic testing for health. "Snake oil" is a loaded phrase, and it is irresponsible of politicians and regulators to use it indiscriminantly.
ICU: nobody panics
After working in the ICU only about 6 months now, it strikes me that one of the main differences between the ICU and other units isn't that the patients crash more so much as that nobody panics. This occurred to me the other night when a patient next door to mine went into an SVT. I was helping the nurse in the room get the patient back to bed when I noted how calm and work-a-day she was. Then I noticed that I, too, was experiencing no adrenaline rush. Who is this person, I wondered? Let's compare PCU me and ICU me:
Progressive Care me: Heart rate suddenly in the 140s-160s??!! OMG, OMG, OMG, whatkindofrhythm is that? OMG,OMG,OMG, okay it's narrow compelx... OMG,OMG,OMG, what do I do?! OMG,OMG,OMG, okay I need an EKG... OMG,OMG,OMG,where do we keep the EKG machine?! Wait, should I get a BP first or get the EKG machine?! OMG,OMG,OMG...
Intensive Care me: Rapid A-fib? sweeeeet... MAP of 132??? Hmm... No way... anybody got a manual cuff... oh, and... yaaaaawn... can somebody find the EKG machine, too? Thanks...
Maybe this is just experience, but I think part of it is setting the boundary of your "normal zone." On PCU, other than an actual code, a rhythm change is about as edgey as you get. In ICU, it's like a little speed bump on the way to end of shift.
Progressive Care me: Heart rate suddenly in the 140s-160s??!! OMG, OMG, OMG, whatkindofrhythm is that? OMG,OMG,OMG, okay it's narrow compelx... OMG,OMG,OMG, what do I do?! OMG,OMG,OMG, okay I need an EKG... OMG,OMG,OMG,where do we keep the EKG machine?! Wait, should I get a BP first or get the EKG machine?! OMG,OMG,OMG...
Intensive Care me: Rapid A-fib? sweeeeet... MAP of 132??? Hmm... No way... anybody got a manual cuff... oh, and... yaaaaawn... can somebody find the EKG machine, too? Thanks...
Maybe this is just experience, but I think part of it is setting the boundary of your "normal zone." On PCU, other than an actual code, a rhythm change is about as edgey as you get. In ICU, it's like a little speed bump on the way to end of shift.
Screen Test Sexy Nurse
I came across the above photo on Flickr. It's from a punk/indie performance art/spetacle called Screen Test that apparently played a few years ago in New York City. The photographer says of the Sexy Nurse: [Screen Test is] a vastly entertaining mish-mosh of alienation imagery, filmic metaphor, identity issues, post-apocalyptic motifs, and splendid music, all squeezed into a single stark hour.Here's a clip from the performance:
I'm taken with Shanti Carson as the primly sexy nurse in white - even in background moments she radiates crisp presence, and it's hard to look away from her when she's on stage.
I do think, however, that this would be a good place to point out that the iconic status of the stereotypical white nurse's uniform is not simply a function of its status as a signal of the Sexy Nurse. It is actually a highly aesthetic and memorable design. This is why the iconic white uniform is iconic, despite not having been the typical nurses uniform throughout most of the history of nursing!
Twigger on intensive learning
Favored (by the gods) author Robert Twigger has a good post up on learning and the school/university system:
More on learning and the university system at RobertTwigger.com...
Intensive well designed courses are the way forward for real learning- of anything- especially if supplemented with less intense encounters with mentor figures. If you have met several real life authors, writing a book seems a normal thing to do, even an easy thing. When Hoagy Carmichael, then an amateur pianist, saw Irving Berlin fumble while playing a song he was surprised that he could do just as well- and so he was inspired to become a professional.I have to agree completely. Nursing school is a lot more intensive and focused than other undergraduate programs, but it is still not as effective as intensive exposure. I still think I could have been better prepared for the ICU by doing 3 semesters of 2 whole days clinicals and 3 days narrow focused reading rather than 3 years of 2 half-days of clinicals and 3 days of reading for 4-5 different courses. Moreover, I think clinicals in a specialty ICU rather than a generalized one would be more effective.
More on learning and the university system at RobertTwigger.com...
Bedside game (formerly, bedside manner)
Dr. Wes links to an article in the NYTimes about a person who volunteers to let medical students auscultate her heart. It is somewhat infuriating, in that it is filled with treacle such as "The students had just learned the technical term for a heart murmur that a physician can feel: a 'thrill.' As any patient knows, the touchstone of a good doctor is the ability to feel one’s heart." The author is a science journalist and should know better. It is a perfectly reasonable expectation for patients to want doctors that treat them compassionately. It is a completely other thing to claim that "good doctors" are the ones patients like.
However, the article does have some good reminders for all health care workers. Most important: maintain your bedside game. I say "bedside game" on purpose. In more civilized times, this was known as "bedside manner," and encompassed behaviors that recognized the patient was another person with potential fear, embarassment, and ignorance of examinations and procedures. In short, it was the medical instantiation of politeness and manners.
But in today's world, bedside manner is not enough. The author wants her medical students to be interested in her first name and approves of a doctor who seems "easy-going" and has arty cuff-links. She doesn't adjust her posture to improve the students' auscultation unless she feels they've paid sufficient attention to her. (Just reflect for a moment on what she is doing there and its importance for the 1000s of patients these doctors will examine!) The author is not scared, she is a self-involved egoist who makes judgements of people based on superficial characteristics like their affect and clothes. In this day and age, you need game just to win over people enough to get them to cooperate in their own examination.
I'm not saying it's a bad idea to accommodate patients, but as our social fabric decays, it's important to remember that we aren't bad people for not wanting to be chummy with strangers. Sometimes you may just need to employ bedside game to reach your Pareto optimal patient care.
However, the article does have some good reminders for all health care workers. Most important: maintain your bedside game. I say "bedside game" on purpose. In more civilized times, this was known as "bedside manner," and encompassed behaviors that recognized the patient was another person with potential fear, embarassment, and ignorance of examinations and procedures. In short, it was the medical instantiation of politeness and manners.
But in today's world, bedside manner is not enough. The author wants her medical students to be interested in her first name and approves of a doctor who seems "easy-going" and has arty cuff-links. She doesn't adjust her posture to improve the students' auscultation unless she feels they've paid sufficient attention to her. (Just reflect for a moment on what she is doing there and its importance for the 1000s of patients these doctors will examine!) The author is not scared, she is a self-involved egoist who makes judgements of people based on superficial characteristics like their affect and clothes. In this day and age, you need game just to win over people enough to get them to cooperate in their own examination.
I'm not saying it's a bad idea to accommodate patients, but as our social fabric decays, it's important to remember that we aren't bad people for not wanting to be chummy with strangers. Sometimes you may just need to employ bedside game to reach your Pareto optimal patient care.
Libya and nurses: in the news
What with the protests/riots, the retaliatory air strikes, etc, Libya has been in the news a bit recently. Now I read in TakiMag that Libyan leader Gaddafi's nurse, a Ukrainian named Galyna Kolotnytska, has left Libya to return to the Ukraine. This is not the first time East European nurses have been in the news in relation to Libya: first there was the Benghazi HIV trials, involving nurses from Bulgaria.
There have been a couple Sexy Nurse photos of Gaddafi's nurse released that are of the wrong woman. An article, and what I suppose are accurate photos, are posted by the Brisbane Times.
In school, I had to do a report on Libya for our public health course. This was very difficult as it was clear at the time that certain assumptions about health care were expected, and I didn't have confidence that a good minority report would be accepted. So I ended finding nice things to say about this country that provides "universal health coverage" to its people.
The truth is that Libyan health care is a shambles, as one would expect from a destitute African country. The Benghazi HIV trials were necessary to provide cover for the fact that the conditions in the Libyan hospitals were so poor. It's not only the hospitals, however. As the editor of Retrovirology points out, Libyan health care professionals do not normal professional priviledges. And with large groups of the unemployed getting by with drugs, Libya has a tiny HIV epidemic that it tries to cover up by playing with numbers.
There have been a couple Sexy Nurse photos of Gaddafi's nurse released that are of the wrong woman. An article, and what I suppose are accurate photos, are posted by the Brisbane Times.
In school, I had to do a report on Libya for our public health course. This was very difficult as it was clear at the time that certain assumptions about health care were expected, and I didn't have confidence that a good minority report would be accepted. So I ended finding nice things to say about this country that provides "universal health coverage" to its people.
The truth is that Libyan health care is a shambles, as one would expect from a destitute African country. The Benghazi HIV trials were necessary to provide cover for the fact that the conditions in the Libyan hospitals were so poor. It's not only the hospitals, however. As the editor of Retrovirology points out, Libyan health care professionals do not normal professional priviledges. And with large groups of the unemployed getting by with drugs, Libya has a tiny HIV epidemic that it tries to cover up by playing with numbers.
The Night Staff and yearly competencies
Last night, I had to do some of our required yearly competencies. These included going over proper use and documentation for medical-surgical restraints. This put me in mind of one of the entries from my other (soon-to-be-discontinued) blog The Sexy Nurse Report...
BDSM outfit Kink posted this pornography shoot (NSFW) at Wired Pussy portraying a hospital patient in restraints being molested by a nurse portrayed by adult actress Princess Donna.
From the description:
In the ICU, we use restraints primarily on intubated patients. Restraints have to be ordered by a doctor, and the doctor has to re-new the order every 24 hours. Hands are restrained only enough to keep the person from being able to reach the tube. Pulses are checked every 30 minutes to make sure the restraints are not restricting blood flow, and they have to be released every two hours to provide range of motion exercise.
Occasionally, the five-point behavioral restraints shown above are used. I've only one patient in these, though, and it was not a "normal" admission, I can tell you. These are no fun, as they require one-on-one monitoring with extensive documentation every 15 minutes. Quite boring, actually. Definitely not sexy at all.
Other unsexy nurse material posted in The Sexy Nurse Report series...
BDSM outfit Kink posted this pornography shoot (NSFW) at Wired Pussy portraying a hospital patient in restraints being molested by a nurse portrayed by adult actress Princess Donna.
From the description:
When Nicotine's husband comes to visit her in the mental ward, he is distressed to hear that her condition hasn't improved at all. In fact, it seems to have gotten much worse as she tells him of her delusions of being abused and experimented on by the night staff of the hospital. Little does he know that his wife is not delusional at all, and as soon as he leaves she will fucked and tormented with all kinds of crazy electrical toys!!!Now, I've enjoyed other content from this outfit (shhh!), but the kinky nurse bit leaves me cold. In reality, restraints are a legally and ethically problematic intervention in health care. They are used very rarely, even in mental health, and much less often than they used to be. The main use of restraints in hospitals today is to keep confused patients from pulling out tubes and wires that have been inserted for medical purposes.
In the ICU, we use restraints primarily on intubated patients. Restraints have to be ordered by a doctor, and the doctor has to re-new the order every 24 hours. Hands are restrained only enough to keep the person from being able to reach the tube. Pulses are checked every 30 minutes to make sure the restraints are not restricting blood flow, and they have to be released every two hours to provide range of motion exercise.
Occasionally, the five-point behavioral restraints shown above are used. I've only one patient in these, though, and it was not a "normal" admission, I can tell you. These are no fun, as they require one-on-one monitoring with extensive documentation every 15 minutes. Quite boring, actually. Definitely not sexy at all.
Other unsexy nurse material posted in The Sexy Nurse Report series...
Ten personality traits: are you a bad nurse?
The Intensive Artist has posted a list of ten personality traits that he thinks are requirements for a good nurse. What are we to make of them? Am I a bad nurse? Let's score me one point per trait.
1. Love being busy
I don't like being busy. However, I also don't like being bored. Typically, busy is boring, but it is less boring than sitting around. I think the more operative point here is "don't be lazy." I'll give myself half a point.
2. Love meeting strangers
I hate meeting strangers. I hate small talk. And I hate learning the details of people's lives when I can't turn the chanel at will. Zero points here, but I'm not sure this is really a good personality trait. I see other nurses making pointless banter. I try to be accommodating and polite and mine for information that will make things go smoother for the patient. I think taking an interest in the details of other people's lives is one of the things that people who are like that think is important.
3. Be a great mutli-tasker
No such thing (that's research, not opinion). It is probably more important to have large RAM than large CPU, however, and to be able to maintain a queue of tasks in the back of the mind that is constantly being revised. I'm not good at this, which is one reason I prefer night shift. Zero points.
4. Be okay with body fluids
Check. Actually, I'm probably too okay. Lack of a healthy respect for micro-organisms can be made up for by revulsion. 1 point.
5. Love physical labor
I love physical labor, but I hate the physical side of nursing. Nursing is not like exercise. After a work-out, I feel great. After a shift, I feel run-down and wrung-out. Doing squats or wind sprints for 15 minutes is not the same as being on your feet for 12 hours. And neither is like construction. More operative here: "be able to take the pain." I guess, half a point for me.
6. Be thick-skinned
This is so very important for nurses. Unfortunately, I am about as thin-skinned as they come. This might explain why I feel run down after a shift. Zero.
7. Thirst for new knowledge
I get a point here, but I'm not sure how important this is for nurses. Most nurses, even ICU nurses seem to be happy to be spoon-fed information from the unit nurse-educator, and they are good or even great nurses nonetheless.
8. Hate routine
Actually, I think this wrong. Chaos is not good. I think being a good nurse involves imposing order and routine. I don't mean in the stereotypical Nurse Ratchet way, but in the sense of having enough control over a situation to stay ahead of the game.
9. Be an adrenaline junkie
Again, I think this is backwards. A good ICU nurse is not one who's going to codes all the time but one who stays ahead of the codes and prevents as many as possible.
10. Have an undying positive energy
Yes, but zero.
Okay, so I score 3 points out of possible 10, but I only agree 100% with 5 of the Artist's 10 personality traits, but I may be very wrong.
1. Love being busy
I don't like being busy. However, I also don't like being bored. Typically, busy is boring, but it is less boring than sitting around. I think the more operative point here is "don't be lazy." I'll give myself half a point.
2. Love meeting strangers
I hate meeting strangers. I hate small talk. And I hate learning the details of people's lives when I can't turn the chanel at will. Zero points here, but I'm not sure this is really a good personality trait. I see other nurses making pointless banter. I try to be accommodating and polite and mine for information that will make things go smoother for the patient. I think taking an interest in the details of other people's lives is one of the things that people who are like that think is important.
3. Be a great mutli-tasker
No such thing (that's research, not opinion). It is probably more important to have large RAM than large CPU, however, and to be able to maintain a queue of tasks in the back of the mind that is constantly being revised. I'm not good at this, which is one reason I prefer night shift. Zero points.
4. Be okay with body fluids
Check. Actually, I'm probably too okay. Lack of a healthy respect for micro-organisms can be made up for by revulsion. 1 point.
5. Love physical labor
I love physical labor, but I hate the physical side of nursing. Nursing is not like exercise. After a work-out, I feel great. After a shift, I feel run-down and wrung-out. Doing squats or wind sprints for 15 minutes is not the same as being on your feet for 12 hours. And neither is like construction. More operative here: "be able to take the pain." I guess, half a point for me.
6. Be thick-skinned
This is so very important for nurses. Unfortunately, I am about as thin-skinned as they come. This might explain why I feel run down after a shift. Zero.
7. Thirst for new knowledge
I get a point here, but I'm not sure how important this is for nurses. Most nurses, even ICU nurses seem to be happy to be spoon-fed information from the unit nurse-educator, and they are good or even great nurses nonetheless.
8. Hate routine
Actually, I think this wrong. Chaos is not good. I think being a good nurse involves imposing order and routine. I don't mean in the stereotypical Nurse Ratchet way, but in the sense of having enough control over a situation to stay ahead of the game.
9. Be an adrenaline junkie
Again, I think this is backwards. A good ICU nurse is not one who's going to codes all the time but one who stays ahead of the codes and prevents as many as possible.
10. Have an undying positive energy
Yes, but zero.
Okay, so I score 3 points out of possible 10, but I only agree 100% with 5 of the Artist's 10 personality traits, but I may be very wrong.
What I've been up to: now working in ICU
Having not been paying attention to my blog or RSS reader for some time, I was surprised to see recently that my Blogger profile still had my occupation listed as "GN." If you've read this blog before, you will probably note that I started it as, essentially, a coping mechanism for nursing school. But I posted on starting my first job, and then what? Here's a run-down:
In the mean time, I've decided to just relax and do some reading and self-education. Also, start blogging again.
- May 2009 : graduated nursing school and got a job in late summer of 2009
- November 2009: 1st job: the Progressive Care Unit at the ~300 bed hospital where I had been working as a ward clerk hired me. I started my initial orientation in the summer and moved off at the end of October.
- July 2010: 1st job change: although many of my co-workers were friendly and supportive, not all were. After suffering through some personal upheavals at work, I decided to move on... cath lab, OR, some other critical care area... I was just about to decide between going back to school in fall 2010 (biochemistry) or vagabonding around the world when I got a bite from the ICU.
- September 2010: 2nd job: the Intensive Care Unit. I was lucky to get this job. I don't know why they hired me, honestly, but here I am. A few weeks on orientation and, bam!, I'm on my own.
- December 2010: 1st major FUBAR: things were going so well and it was suggested that I might want to take on learning SLED dialysis. Then I screwed something up. No patients were hurt in the making of this error, but I had to have a disciplinary meeting involving the union and the manager said "Do you know how many times I've ever had to call someone into my office for [FUBAR error]? Zero!" Yes, that's me: if I'm going to screw up it's likely to be a unique screw-up.
- Today: ICU, but ready to move on if necessary: so I'm coming up on 6 months in the ICU soon, but I'm not really sure where I stand. I think the staff is split with some well-wishers and some who would like to see me go, and I don't really know where the management staff is.
In the mean time, I've decided to just relax and do some reading and self-education. Also, start blogging again.
Underwear sniffing
For an explanation of this post, see The Sexy Nurse Report.
The thing that bothers me most about this advertisement for JBS underwear is the idiotic way this nurse is dressed, although most people are probably primarily scandalized by the sniffing (more on that in a sec...).
Although the entire ad campaign is genius ("men don't want to see naked men"), this particular ad, produced by &Co. advertising agency for JBS is dumb, and by far the least sexy in the campaign:
As for the sniffing, nurses don't deal with patients' clothes. Here is a real photo of the typical underwear situation nurses deal with--an alcoholic patient in the ER needing adult diapers has taken them off (resulting in urine all over the floor and bed):
The smells nurses have to deal with aren't too sweet, either. C. difficile is an intestinal bacteria that can form a "pseudo-membrane" over the intestinal lining, causing massive, recurrent diarrhea with a distinctive smell like a horse stable that every nurse recognizes and dreads:
The thing that bothers me most about this advertisement for JBS underwear is the idiotic way this nurse is dressed, although most people are probably primarily scandalized by the sniffing (more on that in a sec...).
Although the entire ad campaign is genius ("men don't want to see naked men"), this particular ad, produced by &Co. advertising agency for JBS is dumb, and by far the least sexy in the campaign:
As for the sniffing, nurses don't deal with patients' clothes. Here is a real photo of the typical underwear situation nurses deal with--an alcoholic patient in the ER needing adult diapers has taken them off (resulting in urine all over the floor and bed):
The smells nurses have to deal with aren't too sweet, either. C. difficile is an intestinal bacteria that can form a "pseudo-membrane" over the intestinal lining, causing massive, recurrent diarrhea with a distinctive smell like a horse stable that every nurse recognizes and dreads:
Potassium shifts and dialysis
From the "mistakes were made" file: Patient's AM potassium level came back extremely high. Albuterol and insulin were used to get the levels down in the short term (by shifting potassium into the cells). Dialysis was confirmed for that day. When the nephrologist came in, he pointed out that he was unable to dialyze out the potassium while it was stuck in the patient's cells. Ultimately, no harm done for a patient who lives at a high potassium level, but not optimal. Take-away lesson: if the patient is asymptomatic (bedside monitor necessary) and dialysis is immanent, better not to treat a high potassium level pharmacologically.
χαῖρε
This blog covers health- and health-care-related issues. In particular, my interests trend toward:
Why blog? Probably vanity, although I enjoy the processes of reading and writing, and this is a good outlet.
If you use your noggin', the following image will tell you how to contact me...
...and if you are geeky enough to do some decoding, there is more information about me (and a "faux-tograph") in my Blogger profile. And I can also be found other places on the web, which I have catalogued using Del.ici.us. Off the web, I can be found in the greater Montreal area.
- critical care, with an emphasis on the heart
- nutrition, fitness, and prevention
- viruses and genetics
Why blog? Probably vanity, although I enjoy the processes of reading and writing, and this is a good outlet.
If you use your noggin', the following image will tell you how to contact me...
...and if you are geeky enough to do some decoding, there is more information about me (and a "faux-tograph") in my Blogger profile. And I can also be found other places on the web, which I have catalogued using Del.ici.us. Off the web, I can be found in the greater Montreal area.
Sexy Nurse Report, RIP
For a short time, I kept a blog called "The Sexy Nurse Report." The point was to post lame sexualized images of nurses in skimpy outfits and juxtapose them with images and stories of real nurses. I think the only really successful post was one on underwear sniffing. Anyhow, I don't really care to continue with the blog. Carrying on this sort of PC sociological battle is not really my thing. The truth is, the blog was more about self-interest and annoyance than justice: I don't like the mental association of myself with white-skirt-wearing chicklets, and I find the whole nurse fantasy to be unmanly--a pox on dudes who have it! I mean really, what man wants to fantasize about being debilitated and dependent? Anyhow, in the coming weeks, I'm going to re-post some of the content here, and then delete the rest.
Dear Google, You are starting to suck.
Dear Google, You are starting to suck. I thought you ought to know. Your new design template for Blogger is FAIL in Linux Ubuntu. While I can use it with Firefox running on Windows, if I try to use Firefox running on Ubuntu, it won't load. Mostly, I am annoyed because Blogger's previous layout options were just fine. This seems to be a problem with you lately. I was an early adopter of Google and did so to get away from the mess of Yahoo and Netscape. Now your homepage and functionality is getting all screwy like theirs. Example: instant search results as I type? Did I ask for that? It's a pain in the ass. Between auto-completions that screw up my typing and pauses in my typing before I'm done due to instantly loading searches I don't want, "instant" search actually makes my searches take longer. You should read Google as Fat Elvis. It's a good analogy. (Better than "jump the shark," which I think may have jumped the shark.) Anyhow, please get back on track. I like my websites like I like my women: fast, lean, and competent; pretty is a nice perk, but less important, and tricks and fawning are right out. As of now, I have to leave my house and go to the library to change the font or background color on this silly blog. How stupid is that? Thanks for your time (not that you'll listen). Yours, Chris
The comeback tour
I have really not blogged for a long time. I graduated from school, passed my national boards, and got a job a while back. I plan to blog these activities soon. Actually getting a nursing job has been super stressful. Maybe it's just my personality, but I find the whole thing to be on the verge of overwhelming. I lost over 40 lbs in November and December. I have started and stopped several things over the last few months, including learning the piano and moving into an early-twentieth-century 8-bedroom house by myself. Now, I have cut some stuff out and hope to have a less stressful life and start blogging again.
However, right now I have to decide what to do in the immediate future. Should I take a place in an ICU or start traveling after I pass (hopefully) my CCRN this autumn? I don't know, but an ICU job would mean being in my hometown for at least 2 more years. I don't know if I want to do that. However, ICU would be much better prep for either future traveling or advanced practice training. Do I want to spend the necessary time in the books, or should I continue with the leisure activities I enjoy and have not had time to do recently? Who knows. Will try to figure this out soon.
Also, if you are a reader, stay tuned for a new design role-out when I revise my info to reflect the fact that I am no longer a student.
However, right now I have to decide what to do in the immediate future. Should I take a place in an ICU or start traveling after I pass (hopefully) my CCRN this autumn? I don't know, but an ICU job would mean being in my hometown for at least 2 more years. I don't know if I want to do that. However, ICU would be much better prep for either future traveling or advanced practice training. Do I want to spend the necessary time in the books, or should I continue with the leisure activities I enjoy and have not had time to do recently? Who knows. Will try to figure this out soon.
Also, if you are a reader, stay tuned for a new design role-out when I revise my info to reflect the fact that I am no longer a student.
Volunteering for Haiti, 3
When I was a kid, I had an uncle who held me down trapped under some sheets and blankets so I couldn't move. I started to panic a little. Does this cause claustrophobia or did that come first? Anyhow, whenever there are disasters that involve people trapped in rubble, I can't help think it would be about the worst thing to get stuck in the dark unable to move and not knowing how long you might go before being saved or not saved. Nurses don't clear rubble, but there are always injuries and psychological scars.
My vaccinations are up to date, and I've gotten permission for a leave of absence from work. Everything's set. My name is listed with the Fletcher Allen Health Care team, which said they would get back to me, but so far no call. I hope they do make a spot for me and don't close me out for FAHC staff.
I got another e-mail from the RNRN group asking for more info, but they don't seem very well organized to me. The groups most effective at getting non-governmental spur-of-the-moment volunteers down to Haiti are small ones like FAHC or the Dartmouth volunteers shown below.
My vaccinations are up to date, and I've gotten permission for a leave of absence from work. Everything's set. My name is listed with the Fletcher Allen Health Care team, which said they would get back to me, but so far no call. I hope they do make a spot for me and don't close me out for FAHC staff.
I got another e-mail from the RNRN group asking for more info, but they don't seem very well organized to me. The groups most effective at getting non-governmental spur-of-the-moment volunteers down to Haiti are small ones like FAHC or the Dartmouth volunteers shown below.
Volunteering for Haiti, 2
Been trying to contact more groups to find a placement in Haiti...
Partners in Health is not taking volunteers; neither is International Rescue Committee, although they have a blog you can follow.
Last night at my spinning class, I ran into our ICU pharmacist, who let me know about an e-mail circulated from the department of health asking for information on volunteers. They want people with surgical, pediatric, infection control, etc experience. Not a big demand for cardiac nurses. I signed up today in our Human Resources dept but don't expect anything to come of it.
The Vermont nurses union has sent a team in conjunction with the Red Cross. I don't know how that happened but there was already a Vermont-Haiti group, and someone connected with the union is from Haiti, so that might explain.
About volunteering in Haiti
Recently, I’ve been living without a phone, TV, or much Internet access, so I just found out about the earthquake in Haiti not too long ago. Last night, a co-worker said he wanted to use his upcoming vacation to volunteer in Haiti. American Airlines, he said, is flying people to Haiti for free, and you can join the RNRN network to get placed properly in Haiti if you only have a valid US passport. Sounds great, right? Like the way the world should work?
Actually, you don’t need to know that Port-au-Prince has only one small airport, and that the US military is currently using it to land supplies. It would cost AA an enormous loss to fly people to Haiti when any current tourist travel has surely dried up. And, it turns out, the free flights for medical volunteers meme was a hoax, as per Snopes.com
RN Relief Network
However, volunteering for Haiti is not a hoax (I think). The RNRN network apparently did intend to send volunteer nurses on the US navy ship Comfort. The USNS Comfort is traveling to Haiti, as reported by Voice of America. Then the navy apparently decided to use only military personnel. That’s per an RNRN e-mail I received for potential volunteers, but you can read about it from the Contra Costa Times, and it accords with this Kitsap Sun article on naval personnel catching a red eye flight to Bethesda to meet up with the USNS Comfort.
Apparently, the RNRN network still wants to get their volunteers to Haiti, though. As reported by the LA Times, RNRN nurses traveled to Florida, where they met up with the Haitian-American Nurses Association and started scouting out sites and possibilities for volunteers.
Service organizations
So, you’re a nurse, and you still want to volunteer in Haiti (like I did)? Several possibilities come to mind: (1) the Red Cross is not accepting volunteers for Haiti per their website; (2) Doctors without Borders has a long-standing relationship with Haiti, but they want you to be able to carry on a conversation in French and be able to commit to 9-12 months at a time; (3) the American Nurses Association wants you to volunteer locally and get trained before you do anything crazy like going overseas.
The gov’ment
You could try the US Embassy in Haiti or USAID. Both of them ultimately direct you to the Center for International Disaster Information, which has a registration database but makes it clear that you aren’t likely to get a call back unless you have previous disaster relief experience (chicken vs. egg?).
Freelance volunteers
Who’s most desperate? Haitians. If you try contacting the Haitian Consulate in New York, they have a special contact e-mail for medical volunteers. You provide license and insurance information. But this is the Haitian government, now. I sent them my information, but I don’t expect to get a call back.
Lessons from this experience
So, here I sit, prepared to jump a free AA flight at a moments notice with just my klettersack with stethoscope, sphygmomanometer, trauma shears, iodine tablets, and clean socks. Yet nobody wants me. I signed up with RNRN and the Haitian Consulate, but I’m not holding my breath. I also e-mailed the Haitian-American Nurses Association.
The lesson I draw from this is that if you are really interested in disaster relief nursing, you best join the military. You second best get in on the ground floor of a smaller relief organization like your local Medical Reserve Corps, and start getting trained and getting experience. Formally established organizations are the best route to getting someplace. Plus, nursing is all about assessments and planning, right? You need to know things about disasters before you can do much good. Be honest: in a pinch, your ability to give a SQ or IM injection doesn’t qualify you to do much. Get specific knowledge.
And if you do get a call back from the Haitian Consulate, you might want to browse the CDC’s webpage of recommendations for volunteers in Haiti before you get malaria or Typhoid or something.
UPDATES:
Apparently, some nurses are going to Haiti via Canada, and also I read about nurses going in through Dominican Republic. There is a Haitian Nurses Assocation in Boston. E-mail correspondent Mary Crotty says to stick with RNRN, which has like 8000 nurses ready to go.
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