HHS Secretary Sebelius announces intent to delay ICD-10-CM compliance date

HHS Secretary Sebelius announces intent to delay ICD-10-CM compliance date

Post #142 Shortlink: http://wp.me/pKrrB-1Ux

Coverage today of the announcement by Health and Human Services (HHS) Secretary Kathleen G. Sebelius of intent to delay ICD-10-CM compliance date.

Will American Psychiatric Association Board of Trustees take this opportunity to delay its DSM-5 timeline, take a breathing space, and reconsider its controversial proposals for DSM-5, or submit them to independent scientific scrutiny?

Link to report at end of post also quotes Chris Chute, Chair, ICD-11 Revision Steering Group, on possible delay for completion of ICD-11 from 2015 to 2016 – no surprise that ICD Revision may be considering another shift of timeline given the technical ambitiousness of the revision project, the lack of resources and slipping targets for the Alpha and Beta drafts.

Tom Sullivan reports:

Should the U.S. delay the ICD-10 compliance deadline just one year, until 2014, then the WHO will have a beta of ICD-11 ready. And if Sisko’s gut is correct, and the new ICD-10 deadline flows into 2015, well, then a final version of ICD-11 will be fast-approaching.

When it arrives, currently slated for 2015 (but Chute said it could be 2016), the underlying structure of ICD-11 will be profoundly different than any anterior ICD.

“ICD-11 will be significantly more sophisticated, both from a computer science perspective and from a medical content and description perspective,” Chute explains. “Each rubric in ICD-11 will have a fairly rich information space and metadata around it. It will have an English language definition, it will have logical linkages with attributes to SNOMED, it will have applicable genomic information and underpinnings linked to HUGO, human genome standard representations.”

ICD-10, as a point of contrast, provides a title, a string, a number, inclusion terms and an index. No definitions. No linkages because it was created before the Internet, let alone the semantic web. No rich information space.”

 

HHS Secretary Kathleen Sebelius announces intent to delay ICD-10 compliance date

February 16, 2012 | Carl Natale, Editor, ICD10Watch

Health and Human Services (HHS) Secretary Kathleen G. Sebelius confirmed Wednesday that they will change the ICD-10 timeline.

A HHS press release stated they “will initiate the rulemaking process to postpone the date by which certain health care entities have to comply with International Classification of Diseases, 10th Edition diagnosis and procedure codes (ICD-10).”

On Tuesday, Marilyn Tavenner, the acting administrator of the Centers for Medicare and Medicaid Services (CMS), said the agency will examine the ICD-10-CM/PCS timeline. Tavenner made the statement at a conference of the American Medical Association (AMA) National Advocacy Conference. The AMA has declared vigorous opposition to the medical coding system citing the cost, complexity and lack of perceived benefit to patients… Read on

 

CMS Public Affairs Press Release:

http://www.dhhs.gov/news/press/2012pres/02/20120216a.html

News Release
Contact: CMS Public Affairs
(202) 690-6145

FOR IMMEDIATE RELEASE
February 16, 2012

HHS announces intent to delay ICD-10 compliance date

As part of President Obama’s commitment to reducing regulatory burden, Health and Human Services Secretary Kathleen G. Sebelius today announced that HHS will initiate a process to postpone the date by which certain health care entities have to comply with International Classification of Diseases, 10th Edition diagnosis and procedure codes (ICD-10).

The final rule adopting ICD-10 as a standard was published in January 2009 and set a compliance date of October 1, 2013 – a delay of two years from the compliance date initially specified in the 2008 proposed rule. HHS will announce a new compliance date moving forward.

“ICD-10 codes are important to many positive improvements in our health care system,” said HHS Secretary Kathleen Sebelius. “We have heard from many in the provider community who have concerns about the administrative burdens they face in the years ahead. We are committing to work with the provider community to reexamine the pace at which HHS and the nation implement these important improvements to our health care system.”

ICD-10 codes provide more robust and specific data that will help improve patient care and enable the exchange of our health care data with that of the rest of the world that has long been using ICD-10. Entities covered under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) will be required to use the ICD-10 diagnostic and procedure codes.

Report:

http://www.healthcarefinancenews.com/news/could-us-skip-icd-10-and-leapfrog-directly-icd-11

Could the U.S skip ICD-10 and leapfrog directly to ICD-11?

February 16, 2012 | Tom Sullivan, Government Health IT

Practice Central on ICD-10-CM transition; APA Monitor and WHO Reed on ICD-11

Two articles on forthcoming classification systems: the first on ICD-10-CM from Practice Central; the second on ICD-11 from the February 2012 edition of the American Psychological Association’s “Monitor on Psychology”

Post #140 Shortlink: http://wp.me/pKrrB-1Tt

Update: Medicare could delay burdensome rules on doctors | Julian Pecquet, for The Hill, February 14, 2012

“The acting head of the Medicare agency said Tuesday that she is considering giving the nation’s doctors more time to switch to a new insurance coding system that critics say would cost millions of dollars for little gain to patients.

“Marilyn Tavenner, the acting administrator of the Centers for Medicare and Medicaid Services, told a conference of the American Medical Association (AMA) that her agency could delay adoption of the so-called ICD-10 system. Current law calls for physicians to adopt the new codes next year…

“…Speaking to reporters after her prepared remarks, Tavenner said her office would formally announce its intention to craft new regulations “within the next few days.”

ICD-10 Deadline Review Update | Andrea Kraynak, for HealthLeaders Media, February 15, 2012

“Big news regarding the ICD-10-CM/PCS implementation timeline came Tuesday morning during the American Medical Association (AMA) National Advocacy Conference in Washington, DC.”

“Per CMS acting administrator Marilyn Tavenner, CMS plans to revisit the current implementation deadline of October 1, 2013. Tavenner said CMS wants to reexamine the pace of implementing ICD-10 and reduce physicians’ administrative burden, according to an AMA tweet…”

Practice Central: Resources for Practicing Psychologists

Practice Central, a service of the APA Practice Organization (APAPO), supports practicing psychologists in all settings and at all stages of their career. APAPO is a companion organization to the American Psychological Association. Our mission is to advance and protect your ability to practice psychology.

http://www.apapracticecentral.org/update/2012/02-09/transition.aspx

Practice Update | February 2012

Transition to the ICD-10-CM: What does it mean for psychologists?

Psychologists should be aware of and prepare for the mandatory shift to ICD-10-CM diagnosis codes in October 2013

By Practice Research and Policy staff

February 9, 2012—Beginning October 1, 2013 all entities, including health care providers, covered by the Health Insurance Portability and Accountability Act (HIPAA) must convert to using the ICD-10-CM diagnosis code sets. The mandate represents a fundamental shift for many psychologists and other mental health professionals who are far more attuned to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM).

Most psychologists were trained using some version of DSM. For other health care providers, the World Health Organization’s International Classification of Diseases and Related Health Problems (ICD) – which contains a chapter on mental disorders – is the classification standard.

Over the years, efforts to harmonize these two classifications have resulted in systems with similar (often identical) codes and diagnostic names. In fact, even if psychologists record DSM diagnostic codes for billing purposes, payers recognize the codes as ICD-9-CM – the official version of ICD currently used in the United States. Since 2003, the ICD-9-CM diagnostic codes have been mandated for third-party billing and reporting by HIPAA for all…

Read full article here

 

Dr Geoffrey M. Reed, PhD, Senior Project Officer, WHO Department of Mental Health and Substance Abuse, is seconded to WHO through IUPsyS (International Union for Psychological Science). Dr Reed co-ordinates the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders.

Meetings of the International Advisory Group are chaired by Steven Hyman, MD, Harvard University, Cambridge, MA, a former Director of the National Institute of Mental Health (NIMH) and DSM-5 Task Force Member.

The Department of Mental Health and Substance Abuse will also be managing the technical part of the revision of Diseases of the Nervous System (currently Chapter VI), as it is doing for Chapter V.

February 2012 edition of the American Psychological Association’s “Monitor on Psychology”:

http://www.apa.org/monitor/2012/02/disorder-classification.aspx

Feature

Improving disorder classification, worldwide

With the help of psychologists, the next version of the International Classification of Diseases will have a more behavioral perspective.

By Rebecca A. Clay

February 2012, Vol 43, No. 2

Print version: page 40

What’s the world’s most widely used classification system for mental disorders? If you guessed the Diagnostic and Statistical Manual of Mental Disorders (DSM), you would be wrong.

According to a study of nearly 5,000 psychiatrists in 44 countries sponsored by the World Health Organization (WHO) and the World Psychiatric Association, more than 70 percent of the world’s psychiatrists use WHO’s International Classification of Diseases (ICD) most in day-to-day practice while just 23 percent turn to the DSM. The same pattern is found among psychologists globally, according to preliminary results from a similar survey of international psychologists conducted by WHO and the International Union of Psychological Science.

“The ICD is the global standard for health information,” says psychologist Geoffrey M. Reed, PhD, senior project officer in WHO’s Department of Mental Health and Substance Abuse. “It’s developed as a tool for the public good; it’s not the property of a particular profession or particular professional organization.”

Now WHO is revising the ICD, with the ICD-11 due to be approved in 2015. With unprecedented input from psychologists, the revised version’s section on mental and behavioral disorders is expected to be more psychologist-friendly than ever—something that’s especially welcome given concerns being raised about the DSM’s own ongoing revision process. (See “Protesting proposed changes to the DSM” .) And coming changes in the United States will mean that psychologists will soon need to get as familiar with the ICD as their colleagues around the world…

Read full article here

For more information about the ICD revision, visit the World Health Organization.

Rebecca A. Clay is a writer in Washington, D.C

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

Shortlink Post #129: http://wp.me/pKrrB-1Fn

The fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on November 8-9, 2011.

Minutes and Committee’s Recommendations to HHS have now been posted on the CFSAC website.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) 

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Meetings page is here

               Minutes Day One CFSAC Fall 2011 meeting

               Minutes Day Two CFSAC Fall 2011 meeting

Presentations, Public Testimony and links for Videos for Day One and Day Two

 

The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.

See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

 

Recommendations out of the Fall 2011 CFSAC Meeting

CFSAC Recommendations – November 8-9, 2011

The specific recommendations articulated by the Committee are:

1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s  recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.

2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.

4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:

a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.

b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.

c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.

d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.

This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:

We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the  relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.

*Ed: Should be “Excludes1”. For definitions for “Excludes1” and “Excludes2” see Post #118

               November 2011 Recommendations Letter to the Secretary (PDF 31 KB)

               November 2011 CFSAC Recommendations Chart (PDF 138 KB)

The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).

Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.

The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.

As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).

The closing date for comments was November 18, 2011.

A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.

 

Related post

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item: 

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech: Allen Frances

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech by Allen Frances

Post #127 Shortlink: http://wp.me/pKrrB-1ER

Psychology Today

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D. (Chair, DSM-IV Task Force and currently professor emeritus at Duke.)

DSM 5 Censorship Fails
Support From Professionals and Patients Saves Free Speech

Allen Frances, M.D. | January 12, 2012

Last week I described the plight of Suzy Chapman, a well respected UK patient advocate forced to change the domain name of her website by the heavy handed tactics of the publishing arm of the American Psychiatric Association. The spurious legal excuse was commercial protection of the ‘DSM 5’ trademark; the probable intent was to stifle one of the internet’s best sources of DSM and ICD information. This bullying could not have come at a worse time – just as final decisions are being made on highly controversial DSM 5 proposals and with the third and final draft due for release this spring. This is precisely when a ragged and reckless DSM 5 can most benefit from the widest and most open discussion.

Though APA’s trademark claims were patently absurd, Ms Chapman did not have the necessary resources for a protracted fight against a well staffed legal department. Visits plummeted drastically to her new web address (reaching a nadir of just one hit per day) and the site faced months of slow recovery. But the good news is that APA’s clumsy attempt at censorship has backfired, free speech will prevail, and the site is now more popular than ever.

Suzy Chapman writes:

“I want to thank the many psychiatrists, allied mental health professionals, and science writers who have spoken out in opposition to what they see as arrogant censorship on the part of the American Psychiatric Association. Their outpouring of concern has generated considerable interest on websites, blogs and social media platforms. This has increased the traffic on my site by many hundreds of visitors per day. The support of professionals and patient groups illustrates the power of the internet to resist suppression of patient advocacy and to promote free speech.”

“The purpose of my site is to raise public and stakeholder awareness of the forthcoming revisions of both DSM-5 and ICD-11. I endeavor to provide timely and accurate information about DSM-5, including: internet commentaries on proposals; flag ups of journal papers and editorials; news releases and other media statements; and updates on changes to the DSM-5 timeline. I also cover progress on ICD-11, including activities of the Revision Steering Group; documents, presentations and videos; and updates on the ICD-11 timeline. I report on developments with the forthcoming US ICD-10-CM and proceedings of a US federal Advisory Committee to HHS in relation to coding issues. Finally, I follow the advocacy campaigns and initiatives relating to DSM and ICD classificatory issues. My objective is to help stakeholders understand the issues so that they may provide the most useful feedback to the revision process.”

“Despite all the controversies, despite the calls for independent review, despite all the delays and limitations of its field trials, DSM-5 hurtles forward towards publication in May 2013. During this final, decisive year of DSM 5 decision making, I shall continue to publish information, updates and commentaries to promote the widest possible dialogue around the drafting of this most important publication. My new site, ‘Dx Revision Watch – Monitoring the development of DSM-5, ICD-11, ICD-10-CM’ can be found at: https://dxrevisionwatch.wordpress.com/

“This experience has taught me that the APA trademark claims were not only misguided, but probably legally indefensible. ‘Nominative fair use’ is permitted those who are publishing criticism within texts if use of the trademark is relevant to the subject of discussion or necessary to identify the product, service, or company. Courts have found that non-misleading use of trademarks in the domain names of critical websites (like walmartsucks.com) is to be considered ‘fair use’ by non-commercial users – so long as there is no intent to misrepresent or confuse visitors to the site and when it is clear that the site owner is not claiming endorsement by, or affiliation to, the holder of the mark.”

“Everything I have read suggests that my clearly non-commercial use of my previous subdomain name (dsm5watch.wordpress.com) – with its prominent disclaimer and no intent to mislead – falls well within the concept of ‘fair use’. This then raises the obvious question – what grounds did APA have for serving me with demands and threats of possible legal action? Several people have independently sent me materials on ‘SLAPP’ lawsuits (strategic lawsuit against public participation). These are threats of legal action intended to censor, intimidate, and silence critics by burdening them with the cost of a legal defense – so that they will abandon their criticism or opposition.”

“If you are interested in learning more about ‘SLAPP’ lawsuits, there is a good summary at
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

“The Electronic Frontier Foundation is also a very useful resource for legal advice on trademark law for blog and website owners. See http://www.eff.org/issues/bloggers/legal/liability/IP

“The surprisingly spirited and unanimous internet reaction provoked by the APA’s actions will probably discourage it from future pursuit of other ‘fair use’ site owners. I certainly hope so. But if other site owners are issued inappropriate ‘cease and desist’ claims, I do hope they have the resources to seek legal advice before complying.”

“I am very grateful for all the support received in the past week and the many emails thanking me for the work I do. It is gratifying to hear that not only do patients, caregivers and patient organizations rely on my carefully researched and presented content, but that so many professionals are also following my site and find it useful. This experience has been stressful, but I can now say confidently that APA’s actions have definitely backfired –  the many hundreds of additional viewers discovering the site each day will expand its audience and its usefulness.”

All of us owe great thanks to Ms Chapman and to the internet community whose ringing endorsement has allowed her not only to maintain, but also to enlarge, her readership. Ms Chapman will continue to provide the field with the most current and most accurate reporting on DSM 5 during its endgame. I strongly recommend her website as the best clearinghouse for information on DSM 5.

I join Ms Chapman in hoping that this embarrassing episode will discourage APA from all future efforts at abusive censorship – whether they are related to trademark, copyright, or confidentiality agreements. The field must remain vigilant in its efforts to contain APA commercialism and persistent in trying to penetrate APA’s secrecy and inbred decision making. APA must finally come to realize that DSM 5 is an open public trust, not a private business enterprise.


 

Related material:

DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality, Allen Frances, M.D., Psychology Today, January 03, 2012

Further media coverage of the APA cease and desist v DSM-5 Watch website issue collated here:  Post #123

Article on “cease and desist” issue: Pity the poor American Psychiatric Association, Parts 1 and 2 by Gary Greenberg

 

Legal information and resources for bloggers and site owners:

1] Wipedia article: Cease and desist
http://en.wikipedia.org/wiki/Cease_and_desist

2] Wipedia article: Strategic lawsuit against public participation (SLAPP)
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

3] Electronic Frontier Foundation (EFF)
http://en.wikipedia.org/wiki/Electronic_Frontier_Foundation
http://www.eff.org/

EFF Bloggers’ Rights
https://www.eff.org/bloggers

EFF Legal Guide for Bloggers
https://www.eff.org/issues/bloggers/legal

4] Chilling Effects
http://en.wikipedia.org/wiki/Chilling_Effects_(group)

http://chillingeffects.org/

Chilling Effects FAQ on Trademark Law
http://www.chillingeffects.org/trademark/faq.cgi#QID251

Chilling Effects on Protest, Parody and Criticism Sites
http://www.chillingeffects.org/protest/

5] U.S. Trademark Law, Rules of Practice & Federal Statutes , U.S. Patent & Trademark Office, November 2011 http://www.uspto.gov/trademarks/law/tmlaw.pdf

CFSAC November 2011 meeting: videos, presentations and coding of CFS in ICD-10-CM

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

Post #118 Shortlink: http://wp.me/pKrrB-1xk

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

The two day fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on Tuesday, November 8 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW, Washington, DC.

No live video streaming

In May 2009, a precedent was set for the entire proceedings of CFSAC meetings to be streamed as real-time video with videocasts and auto subtitling posted online a few days after the meetings have closed.

Prior to the November meeting, CFSAC Committee Support Team had clarified that the commitment to providing real-time video streaming could not be met (later said to be due to budgetary constraints) and that a phone link would be provided instead – an option not available to those of us outside the US – and that a high quality video of the two day proceedings would be posted within a week. In the event, videos for Day One and Day Two of the meeting were not posted within this timeframe.

 

International Classification of Diseases  – Clinical Modification (ICD-CM):
Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

The Agenda items that have the most relevance for Dx Revision Watch site are the presentation on Day One by Donna Pickett (NCHS) and the Committee’s formulation on Day Two of a revised CFSAC Recommendation to HHS on the coding of CFS in the forthcoming ICD-10-CM.

The video for that section of the meeting wasn’t published on YouTube until November 17, just one day prior to the closing date for submission of comments on the proposals for the coding of CFS in ICD-10-CM put forward by the Coalition4ME/CFS for NCHS consideration and an alternative option presented by NCHS at the September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee [1].

This meant that many of those compiling comment for submission before the November 18 deadline who had not attended the CFSAC meeting in person were unable to use Ms Pickett’s presentation to inform their submissions as they were not aware that the videos for Day One had been published or would have already submitted their comments.

Ms Pickett’s presentation slides can be viewed here in PDF format: PowerPoint Slides

 

The video of Ms Pickett’s presentation can be viewed below or on YouTube:

Uploaded by WomensHealthgov on 17 Nov 2011
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, November 8, 2011. 9am to 11:15am. Opening Remarks, International Classification of Diseases-Clinical Modification (ICD-CM), and Public

 

During her presentation, Ms Pickett had outlined the two proposals under consideration (Option 1 and Option 2) but the slide for the NCHS’s suggestion (Option 2) omits the suggested Excludes.

Note also that the presentation slides did not set out that NCHS has suggested the inclusion term “Chronic fatigue syndrome NOS” under a suggested subcode, “G93.32 Chronic fatigue syndrome”

I consider Option 2 (NCHS) to be problematic for a number of reasons and I was unable to support the NCHS’s suggestion. I could not support:

the suggested revision of the existing ICD Title term “G93.3 Postviral fatigue syndrome” to “G93.3 Postviral and other chronic fatigue syndromes”;

the inclusion of term “Chronic fatigue syndrome NOS” included under “G93.32 Chronic fatigue syndrome”;

the specification of class 2 exclusions, that is, “Excludes2” rather than “Excludes1”.

 

If consideration were being given to the creation of separate subcodes or child categories to a revised parent G93.3 class, then I would prefer to see three discrete subcodes under G93.3, one for each term, in the order: G93.31 Postviral fatigue syndrome; G93.32 Myalgic encephalomyelitis (Benign); G93.33 Chronic fatigue syndrome under an alternative term to the suggested parent term, “G93.3 Postviral and other chronic fatigue syndromes”.

Given that I consider NCHS Option 2 to be problematic and given that no alternatives appear to be currently under consideration by NCHS, I submitted a comment supporting Option 1 (Coalition4ME/CFS), with two caveats:

a) That any excludes specified are Excludes1 not Excludes2

b) That consideration is given by NCHS to specifying two exclusion terms beneath G93.3

Excludes1 chronic fatigue, unspecified (R53.82)
                 neurasthenia (F48.8) 

 

I have reviewed the September ICD-9-CM Coordination and Maintenance Committee meeting audio [5] and do not consider there had been adequate discussion at the meeting of the implications for the inclusion of a “Chronic fatigue syndrome NOS (Not Otherwise Specified)” coded to a suggested subcode “G93.32 Chronic fatigue syndrome”.

The implications for this suggestion do not appear to have been discussed publicly at the November CFSAC meeting nor were the potential implications for the use of “Excludes2” class excludes raised during public discussion.

 

New CFSAC November 2011 Meeting Recommendation

The Minutes for the November CFSAC meeting and the approved Recommendations formulated at that meeting are not yet published on the CFSAC site. [Update @ March 27, 2012: Minutes are available here ]

At the May 2011 meeting, following discussion of the ICD-10-CM CFS coding issue and concerns for the current proposals of the DSM-5 Somatic Symptom Disorders work group, the following Recommendation had been proposed by Dr Lenny Jason and voted unanimously in favour of by CFSAC committee:

 http://www.hhs.gov/advcomcfs/recommendations/05112011.html 

The CFSAC May 2011 Recommendation:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.

CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005.

CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Following committee discussions at the November meeting, this May 2011 Recommendation was reviewed and expanded on to reflect the developments at the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee and CFSAC committee’s views on the two Options that have been proposed and are under consideration.

CFSAC committee member and disability attorney, Steven Krafchick, read out a motion for a new Recommendation which was proposed and voted unanimously in favour of:

The CFSAC November 2011 Recommendation:

CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.

CFSAC rejects the current classification of CFS in Chapter 18 of ICD-10-CM under R53.82 – chronic fatigue,  unspecified > chronic fatigue syndrome Not Otherwise Specified.

CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “Diseases of the nervous system” at G93.3, in line with ICD-10 (the World Health Organization) and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005 and May 2011.

CFSAC rejects the National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as [benign] myalgic encephalomyelitis because CFS includes both viral and non-viral triggers.

CFSAC recommends that an “Excludes1” be added to G93.3 for chronic fatigue – R53.82 and neurasthenia – F48.0.* CFSAC recommends that these changes be made in ICD-10-CM prior to its roll out in 2013.

*Ed: Note: CFSAC committee has been advised that the discrete code for Neurasthenia in ICD-10-CM Chapter 5 is F48.8 not F48.0, as had been read out at the meeting. I am informed that the new Recommendation is being amended.

 

Watch a video clip for the Recommendation, here:

Uploaded by coalition4mecfs on 17 Nov 2011
CFSAC Committee Recommendation on the ICD-10 -11/9/2011

 

Watch discussion of Recommendation and vote here: [1 hr 12 mins from start]

CFSAC November 9, 2011, 1:30 pm – 4:30 pm

Uploaded by WomensHealthgov on 18 Nov 2011
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, November 9, 2011. 1:30pm to 4:30pm. Public Comment and Committee Discussion to Finalize Recommendations

 

Request for clarification 

During her presentation to CFSAC, in response to a query from the floor, Ms Pickett had clarified that the comments being received by NCHS were not being reviewed until after the closing date for submissions (November 18) and that a decision about the proposals would be made in December. At the time of publication, no decision has been made public and it is not known whether any decision has been arrived at.

On December 18, I emailed Ms Pickett and asked if she could advise me by what date a decision is expected to have been made following review and consideration of the comments on proposals for the coding and chapter placement of Chronic fatigue syndrome for ICD-10-CM that were received by her office between September 14 and November 18.

On the CDC website it states that:

The ICD-9-CM Coordination and Maintenance Committee’s role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made at the end of the year and become effective October 1 of the following year.”

I also asked Ms Pickett if she would clarify if this meant that any decision arrived at by the Coordination and Maintenance Committee is advisory only and whether a final decision would be made by the Director of NCHS and Administrator of CMS; if this is the case, by what date would their decision expect to be made and by what means would a decision be made public.

I will update when I have a response from Ms Pickett and/or when any decision has been reached and announced.

 

Key documents from the November CFSAC meeting

CFSAC Meetings Page

November 8-9, 2011 CFSAC Meeting Agenda

Presentations

Videos of proceedings

Day One: Tuesday, November 8, 2011

CFSAC November 8, 2011; 9:00 – 11:15 am |  Presentation by Donna Pickett, NCHS  Presentation slides 
CFSAC November 8, 2011; 11:30 am – 1:00 pm |
CFSAC November 8, 2011, 2 pm – 4 pm |
CFSAC November 8, 2011, 4 pm – 5 pm |

Day Two: Wednesday, November 9, 2011

CFSAC November 9, 2011, 9 am – 10:30 am
CFSAC November 9, 2011, 10:45 am – 1:15 pm |
CFSAC November 9, 2011, 1:30 pm – 4:30 pm |  Discussion of wording of Recommendation at 1hr 12mins

Presentations

Tuesday, November 8, 2011

Donna Pickett, CDC  International Classification of Diseases – Clinical Modification (PDF– 91.8 KB)

Future Interdisciplinary Research for ME/CFS that Require a Variety of Scientific Disciplines (PDF –  1,008 KB)

Wednesday, November 9, 2011

International Classification of Functioning, Disability and Health: Application and Relevance to Chronic Fatigue Syndrome (PDF – 1 MB)
CDC Report for CFSAC – CFS Activities Since May 2011 (PDF – 208 KB)
Minimum Data Elements for Research Reports on CFS (PDF – 1,016 KB)
NIH Report for CFSAC (PDF – 241 KB)

Public Testimony 

See this CFSAC page for list of Public Testimony and PDFs of testimonies for

Day One: Tuesday, November 8, 2011
Day Two: Wednesday, November 9, 2011

See this CFSAC page for PDFs of Written Testimony Received Prior to the Meeting Date.

Marly Silverman’s Public Testimony on behalf of the Coalition4ME/CFS on the issue of the proposed coding of CFS in the forthcoming US specific ICD-10-CM:

http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_sillverman.pdf

 

The two proposals

The Coalition4ME/CFS had submitted a proposal to NCHS, prior to the September meeting, requesting that Chronic fatigue syndrome be deleted as an inclusion term under code R53.82 Other malaise and fatigue (Chapter 18 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified) and that the term be added as an inclusion term under code G93.3 Postviral fatigue syndrome (Chapter 6 Disorders of the nervous system).

The Coalition 4 ME/CFS had also requested that their proposal be considered for October 1, 2012 so that the change occurs prior to the October 1, 2013 implementation date of ICD-10-CM even though the condition is not a new disease.

Ed: Note: Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term was being requested by the Coalition4ME/CFS, that is, there was no proposal to Add, Delete or Revise the term Benign myalgic encephalomyelitis other than a request that consideration be given to placing the ICD-10 descriptor “Benign” at the end of the term, as “Myalgic encephalomyelitis (Benign)”.

[Image source: Page 11, Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011  http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf ]

 

Ed: Note: At the September 14, 2011 ICD-9-CM Coordination and Maintenance Committee meeting, there had been some brief discussion of whether class 1 excludes (Excludes1) were more appropriate than class 2 excludes (Excludes2). Clarification of the difference between the terms follows:

Source: ICD-10-CM TABULAR LIST of DISEASES and INJURIES, Instructional Notations 

Excludes Notes

The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

Excludes1

A type 1 Excludes note is a pure excludes. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

Excludes2

A type 2 excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.

 

References

[1] Meeting materials September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee 

[2] Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

[3] Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)     [Post sets out proposals: Option 1 from Coalition4ME/CFS and Option 2 from NCHS, which are also set about below.]

[4] Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)

[5] Audio of September 14 NCHS ICD-9-CM meeting http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this audio downloads as a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

CFSAC November Meeting Agenda and Call-in Information

CFSAC November Meeting Agenda and Call-in Information

Post #111 Shortlink: http://wp.me/pKrrB-1mG

CFSAC Meetings Page: http://www.hhs.gov/advcomcfs/meetings/index.html

CFSAC November meeting Call-in Information

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_callininfo.html

CFSAC Fall 2011 Meeting (November 8-9)
Audio Call-In Information

The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:

Please dial the participant dial-in number:
Participant Dial-In Number: (866) 395-4129

Please use the following passcodes for each day:
Passcodes:

Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call tocontact the operator for support.

There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is not a requirement). You will be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to access the conference.

The CFSAC meeting will begin from 9:00 am – 5:30 pm Tuesday, November 8 and 9:00 am – 4:30 pm on Wednesday, November 9.

November 8-9 2011 Meeting Agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_agenda.html

CFSAC Fall 2011 Meeting (November 8-9)

Day One

Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D., Designated Federal Officer

9:10 am International Classification of Diseases-Clinical Modification (ICD-CM)
Donna Pickett, RHIA, MPH, National Center for Health Statistics

10:00 am Public Comment Public

11:15 am Break

11:30 am Welcome Statement from the Assistant Secretary for Health Howard K. Koh, M.D., Ph.D

12:00 pm Agency Updates: AHRQ, CMS, FDA, HRSA
Ex Officio Members

1:00 pm Subcommittee Lunch Subcommittee Members

2:00 pm Public Comment Public

2:45 pm Break

3:00 pm Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific Disciplines, Gailen Marshall, M.D., Ph.D.
Committee Discussion

4:00 pm Committee Discussion

Past CFSAC Recommendations Committee Members

5:00 pm Adjourn

Day Two

Agenda – CFSAC Fall 2011 Meeting
November 9, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell, Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D., Designated Federal Officer

9:15 am HHS Office on Disability
Rosaly Correa-de-Araujo, M.D, M.Sc., Ph.D, Deputy Director, HHS Office on Disability

10:00 am Centers for Disease Control and Prevention Webpage
Eileen Holderman
Nancy G. Klimas, M.D.
Ermias Belay, M.D.

10:30 am Break

10:45 am Agency Updates: CDC, SSA, NIH
Ex Officio Members

11:45 am Minimal Elements for Papers
Leonard A. Jason, Ph.D.

12:15 pm Subcommittee Lunch
Subcommittee Members

1:15 pm Public Comment
Public

2:15 pm Break

2:30 pm Committee Discussion

Finalize Recommendations Committee Members

4:30 pm Adjourn

[ENDS]

Related information and posts:

1] Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative: http://wp.me/pKrrB-1hd

2] Minutes of May 10-11 2011 CFSAC meeting (Extract: Discussion of concerns re coding of CFS for ICD-10-CM)

3] A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases CDC, 2001.

4] CFS orphaned in the “R” codes in US specific ICD-10-CM

5] Forthcoming US “Clinical Modification” ICD-10-CM (starts half way down page)