New plans for Medicare crop up during May 2011 CFSAC discussion

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Last Updated: 13 January 2016 13 January 2016

Editorial Note: The CFSAC had made a recommendation at the previous meeting of Oct. 13-14, 2010 to adopt the term of "ME/CFS" at Dept. of Health and Human Services programs. Therefore, this article reflects the change made by the CFSAC.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of May 10 -11, 2011 concluded with a committee discussion of the numerous topics presented over the two-day meeting. Most of the panel felt this was one of the best meetings they could remember as well as the most-heavily attended.

Dr. Nancy Klimas reported on a proposition, described as interesting and exciting, coming from the Center for Medicare and Medicaid Services (CMS). The CMS is looking for a consortium or a group of people who are dealing with certain illnesses whose treatment protocols could serve as a model to Medicare. There is the intent to develop treatment models for specific illnesses such as ME/CFS for better and more cost-effective care under Medicare. Dr. Klimas suggested that this is a project in which members from the CFSAC research subcommittee should be involved.

To do it, they would need to form a working group and create the framework for a protocol plus use a good mechanism that would drive the data for this model. "Reverse translational research" was brought up as a very efficient mechanism for a project like this. Reverse translational research refers to capturing/feeding information from the bedside to the bench (i.e., the opposite of the flow of information in translational research). As poignant as the patients' personal stories and experiences were, another researcher pointed out that collecting and tabulating meaningful data from patients like these would carry much more weight (i.e., have more practical use) than personal testimonies.

Tools and systems that can collect data already exist, reported Dr. Klimas. One such system is called REDCap (Research Electronic Data Capture). Its advantages include that it: is free, offers a turnkey approach (i.e., meaning that is ready to use), provides quick and ready access to clinical and research networks, and has as its only expense the cost of linking. Dr. Klimas suggested they (i.e., the working group they intend to form) just get started with REDCap, work towards selecting 4 or 5 key assessment tools to measure the domains of the illness (as described in Dr. Klimas' own words), and put together a small working group to demonstrate this at the upcoming IACFS meeting in Ottawa. Briefly, REDCap is a web-based system designed for the capture of data used in research studies which also provides an interface by which to enter the data, and includes import/export features, audit trails and reporting capabilities.

Editorial Note about what is behind the CMS request: The proposition brought up by Dr. Klimas for a "model of care" is not a casual request, but instead is part of the new programs and initiatives pursued by the Medicare and Medicaid Innovation Center, in compliance with the provisions of the Affordable Care Act of 2010. The mission stated at the CMS Innovation Center is to transform Medicare, Medicaid and Children's Health Insurance Programs by exploring new ways of providing good quality health care while reducing costs. Part of this process will include testing "care" and "payment" models. This ties into some of the programs recommended by Dr. Koh earlier on Day 2. What we've heard or seen so far is actually the beginning of a long series of changes that the CMS, as one federal agency, is required to plan and put into practice over the next 5 to 8 years. The health care reform of programs that are administered by federal agencies (like the CMS) is already underway.

A patient advocate on the committee, Eileen Holderman, spoke about the many public service announcements (PSA) that are out there, for a wide range of causes, and many of these are supported by various government agencies. While listening to a radio station that broadcasts via the internet, she heard five different PSA's along these lines. For example, one of these was the recently launched PSA campaign for lupus erythematosus that was sponsored by the Office of Women's Health. Therefore, she believes that the timing is right for ME/CFS to be recognized in the same way and suggested that a PSA be seriously considered as way to get our message out.

The committee was mutually interested in seeing that the evaluation process of the most severely ill applicants for Social Security disability benefits be faster. Initially, many committee members thought the best way to accomplish this would be to recommend that Social Security Administration add ME/CFS in the Blue Book list of impairments. This way the most profoundly ill patients could meet the criteria at the third step of the evaluation process and receive their benefits sooner. However, this approach might pose a higher hurdle, cautioned Dr. Wanda Jones, and an addition to the Blue Book would also require going through a formal process complete with the rationale for such an addition. Instead, a motion was made to request that the DHHS sponsor a workshop that would review disability measures for ME/CFS, invite experts, and work towards creation of chart or cut points which could help to identify disability. The committee agreed that a virtual, half-day seminar would be an acceptable way to handle this.

Furthermore, mutual interest was shown by the committee to advance the quality of life issues for pediatric cases. They would like to pull together an expert group who could present at a national conference on education.

Dr. Wanda Jones announced that she will be replaced by Dr. Nancy Lee, as the Designated Federal Official for the CFSAC. Dr. Lee was appointed as the Deputy Assistant Secretary of Health-Women's Health, and the Director of the Office on Women's Health (OWH) in the Office of the Secretary, U.S. Department of Health and Human Services (DHHS). Prior to this recent appointment, Dr. Lee had worked for a while as a private consultant in public health and before that, spent 22 years at the Centers for Disease Control and Prevention (CDC).

Resources

The U.S. Department of Health and Human Services (DHHS) recently posted the official minutes for the CFSAC Meeting for May 10, 2011—click here to view CFSAC Day 1 Minutes.

The Center for Medicare and Medicaid Innovation has created a website detailing plans and programs, in the works, for the revision of Medicare services and payment models—read more at the CMS Innovation Center.

Spring 2011 CFSAC Meeting - Day 2 Highlights

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Last Updated: 13 January 2016 13 January 2016

Spring 2011 CFSAC Meeting—Day 2 (May 11) highlights federal programs available to patients

The Chronic Fatigue Syndrome Advisory Committee (CFSAC), which is an official advisory committee within the federal Department of Health and Human Services, held its spring two-day conference on May 10 -11, 2011. Dr. Christopher Snell served as Chair and Dr. Wanda Jones as Designated Federal Officer. Day 2 covered a lot of material including a review of the 5-step process used by the Social Security Administration to determine a claimant's eligibility for disability; a report on ERISA provisions by a member of the U.S. Department of Labor; and then a wrap-up by the CFSAC in its review and recommendations.

Due to sheer volume of material, this article will concentrate on the federal programs that were reviewed and list sources for useful information on the same. We will soon post a final article in this series on the meeting which will review the CFSAC committee discussions and recommendations.

Statement by Assistant Secretary of Health puts focus on patient suffering and poor quality of life

Members of the CFSAC committee were introduced to Dr. Howard Koh, the Assistant Secretary for Health for the U.S. Department of Health and Human Services, who was appointed to this position by President Obama in 2009. Dr. Koh oversees numerous public health offices and serves as senior health advisor to the Secretary of Health, Kathleen Sebelius. Dr. Koh welcomed the committee and issued a statement that summed up his understanding of the major CFS/ME issues and challenges and the means by which they can be confronted.

In his presentation, Dr. Koh:

• Stated that while he serves in this position, as Assistant Secretary for Health, he will remain committed to working with the CFSAC committee

• Commended the work of the CFSAC: its recommendations and accomplishments over recent years

• Stated that he will strive to bring a unified approach to ME/CFS, its etiology, treatment and quality of life for patients with ME/CFS

• Indicated that he had recently met with the Secretary of Health and reviewed the status of CFSAC recommendations over recent years

• Indicated that Secretary of Health Sebelius appeared to be very interested and supportive

• Remarked that he is grateful to Dr. Francis Collins (at the NIH). Dr. Koh's expectations of Dr. Collin's involvement in CFS/ME are very positive, particularly in view of his scientific background and commitment.

• Acknowledged how many doctors have never heard of ME/CFS

• Acknowledged the level of disability caused by this illness and how it impacts quality of life

• Advised patients to be sure to check out the Affordable Care Act and Pre-existing Condition Insurance Plan (PCIP) which are part of the new health law. Links to these laws and programs are included at the end of this article.

• Recognized the importance of provider education and the need to update the current provider information (i.e., like the information provided by CDC)

• Expressed concern and sincere interest to put an end to the type of patient hardships (i.e., patients not able to find knowledgeable doctors) that were heard during public testimonies

• Made a pledge that he wants to be at all future CFSAC meetings, while he is the Assistant Secretary of Health, and work closely with this committee

Dr. Koh concluded that the best strategy would be to go after the best science and best scientific leads available at this time. He recommended waiting for the results of the two studies currently funded by the NIH (due to come in around the end of the year). Meanwhile, he felt there were several things that could be addressed in the near future (as mentioned above) which could help to alleviate the suffering and hardships endured by patients.

5-Step SEP used to determine one's eligibility for Social Security disability

The next item on the agenda, Social Security Administration (SSA): Presentation on Disability, was provided by John Federline, the (Alternate) Deputy Director for the Office of Medical Listings Improvement with the SSA. Since seeking disability status is a very involved, complicated process, as well as one which has not changed all that much, this article provides only a cursory explanation of this process. The eligibility of an applicant (also known as a claimant) for Social Security disability is determined by whether he or she meets certain criteria during a stringent evaluation process called the Sequential Evaluation Process (SEP). "The 5 steps of SEP" was the title of a flowchart used by Mr. Federline during his presentation.

Briefly, the evaluation of an applicant follows a set order of 5 steps; each step comes with its own criteria; each step requires a decision; and the claim for an applicant will move to the next step only if the criteria at each preceding step can be satisfied. The first three steps are:

1. a determination whether the applicant is engaged in substantial, gainful activity (which is checked against SSA guidelines for maximum income limits)

2. an examination of the severity of the applicant's impairments or combination of impairments (to determine if these indeed are severe enough to affect his or her ability to work)

3. a determination whether these impairments meet or equal the SSA listing of impairments.

The last two steps evaluate the applicant's ability to do his or her prior work and determine if he or she can do any other kind of work. The SEP is carried out by disability examiners who adhere to multiple guidelines, listings, rulings, and manuals published by the Social Security Administration.

In response to a question asked by one of the panelists, Mr. Federline assured the committee that all SSA adjudicators are trained in a consistent manner across the country and are able to process ME/CFS claims with the same degree of accuracy and consistency. Besides their training, he pointed out consistency is also achieved and maintained by use of the same Social Security Rulings (i.e., SSR 99-2p issued in April 1999 explicitly for the evaluation of CFS impairments and SSR 96, specific parts of which help to identify other relevant impairments, and the role of various medical opinions) as well as use of the Program Operations Manual System (POMS). POMS was defined as "SSA's official vehicle for issuing program instructions" on another one of Mr. Federline's slides.

In conclusion, he believes the SSA determination of disability process is thorough, fair and impartial. [Editorial note 2015—SSR 99-2p has been superceded by a new ruling in 2014.]

Another question was raised about whether ME/CFS could be listed as an impairment in the Blue Book (the listing of impairments described above in step 3), with the idea that the disability evaluation process could be satisfied by the third step during the SEP. Federline explained that although the SSA rewrites and updates the Blue Book about every 5 years and periodically adds new impairments, the requests for additional impairments are numerous and SSA can consider only a limited number.

Furthermore, he felt that just having an impairment listed in the Blue Book, on that alone, may not improve nor shorten the evaluation process. Mr. Federline explained, "If some of their impairment contributes to it [the disability] with CFS, such as the mental impairment, the whole person has to be considered. It would still be there even if it is in the Blue Book."

When applicants file for disability benefits due to CFS, the primary impairments will usually be post-exertional malaise and fatigue, cognitive dysfunction and/or other primary manifestations of the illness. It is possible that an applicant could have a mood disorder or reactive depression (as a result of the illness), and these impairments might be listed as secondary ones. But there are also times when patients have seen physicians who don't understand the illness and report their patients' illness/ impairments as being mental disorders. Dr. Nancy Klimas felt this continues to be a huge problem for considerable number of patients.

Another situation brought up by Dr. Klimas was how veterans often have their impairments "added up"—a percentage for multiple physical impairments, plus a percentage for mental problems and so on. It is not unusual to end up with a veteran who is considered as being 180% disabled. It does not work this way with the SSA—disability is determined to be "all or nothing".

ERISA, highlights from CFSAC meeting, and where to find more information

Lisa Alexander spoke about ERISA as a representative from the U.S. Department of Labor. More precisely, Ms. Alexander's serves as Chief of the Division of Coverage, Reporting and Disclosure, which is one of the divisions that make up the Office of Regulations and Interpretations. The latter, along with multiple other offices, form the Employee Benefits Security Administration (EBSA), a federal agency within the U.S. Department of Labor.

It is important for consumers to know at least this much regarding the breakdown of this complex organizational structure. First, consumers will get a better understanding of which division is responsible for the management of programs they might be using.

Second, it is always good to know where to find help and accurate information about programs before there is a problem.

Much of what Ms. Alexander discussed is overseen by EBSA. This agency is involved with ERISA provisions, COBRA and other health insurance plans and has a huge amount of information available at its website.

The link to the main EBSA website is provided at the end of this article and it could be tremendously helpful, not only for ERISA matters, but also numerous insurance and heath laws-an area which is rapidly changing.

Now to address the acronym of ERISA, which has been mentioned several times already. It refers to the Employee Retirement Income Security Act of 1974. ERISA is a federal law that sets minimum standards for most voluntarily established pension and health plans in private industry which provide protection for individuals in these plans.

Some important points to highlight from Ms. Alexander's presentation is that changes can be made to a plan or to conditions covered by a plan which, in turn, could change or terminate coverage in some cases. Insured individuals should receive a notice informing them about any modifications or exclusions to their plan, within a certain time frame.

If or when individuals have problems with coverage for plans overseen by EBSA, have questions, or could use assistance from one of the benefits advisors, Ms. Alexander urged that people call the EBSA's toll-free number: 1 (866) 444-EBSA (3272).

Links to recommended sources of information

The Affordable Care Act is actually part of the Patient Protection and Affordable Care Act-a law signed by President Obama in early 2010 and one that will provide many health-related provisions over a four-year period. For an easy to understand introduction about this new health law, click here.

The Pre-existing Condition Insurance Plan (PCIP) is a new program that will provide a health coverage option for individuals who have been uninsured for at least six months; have a pre-existing condition; and have been denied coverage (or have been offered insurance but without coverage of pre-existing condition) by a private insurance company. To learn more about the Pre-Existing Condition Insurance Plan (PCIP), click here.

Employee Benefits Security Administration's (EBSA) home page is a source of information that really needs to be bookmarked. Most people will not readily recognize this federal agency, nor realize which programs it oversees. The EBSA site provides a wealth of  information such as consumer information, compliance assistance, publications, the latest news, workshops and webcasts on many topics, including ERISA, COBRA, and the Affordable Care Act (all of which are meshed together under EBSA). To access the EBSA homepage, click here.

A few patient-friendly articles about ERISA are available from the Massachusetts CFIDS/ME & FM Association library of articles as follows:

Disability Discussion—Barbara Comerford, ESQ
Disability Insurance Claims: General Information  by Attorney George Thompson, a specialist in Long-term Disability.


To watch the video of the meeting, which we highly recommend, go to the CFSAC May 2011 archived videos webpage and click on video for Day 2, May 11, 2011. A screen will open up and the lecture will start promptly. Below this screen is a display of the items scheduled for Day 2 discussion. Scroll down and click on the title for desired topic and the video will reposition itself (after a brief buffering).

The Massachusetts CFIDS/ME & FM Association has already posted an article highlighting key topics discussed on Day 1. Taking into consideration the amount of material presented over this two-day period and wanting to give adequate attention and coverage to major issues, we have decided to also create a third, separate article. The last installment article for the Spring 2011 CFSAC meeting will report on the committee's discussion and recommendations. Stay tuned for the release of the final article in the near future.

25 Year Follow-up in Chronic Fatigue Syndrome

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Last Updated: 12 January 2016 12 January 2016

On April 16, 2011, Dr. David S. Bell was the keynote speaker at the Massachusetts CFIDS/ME & FM Association’s (MassCFIDS) continuing-education lecture series. The event was co-sponsored by the Massachusetts Department of Public Health at the Hinton State Laboratory Institute Auditorium. Dr. Bell, a retired pediatrician from upstate New York with intense curiosity, set out to find answers as to what made his young patients so ill during the cluster outbreak in the late 1980’s. Along the way, he became one of the world’s leading researchers on CFIDS/ME and one of only a handful of physicians who have been able to closely follow his patient population for decades. Dr. Bell has authored many research articles as well as leading books on Chronic Fatigue Syndrome.  View the full article.

Tips for FM Patients Applying for Social Security Disability

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Last Updated: 24 October 2015 24 October 2015

Ed Swierczek, a senior claims representative for a company that assists disability claimants, in 2011 provided some good advice for fibromyalgia patients who are applying for Social Security.

According to Mr. Swierczek: "...it is still vital that patients let their doctors know about their symptoms at every visit...Let them know you are having muscle pain, let them know you are not getting restful sleep. Encourage your doctor to include in his or her physical examination the requisite tender point examination if you have not received one. This is important because the [Social Security] adjudicators want to see some evidence of clinical findings to help establish a diagnosis. Having the appropriate tender points adds further credence to the presence of FMS [fibromyalgia]."

Social Security's criteria for establishing fibromyalgia as a medically determinable severe impairment includes:

1. Evidence of widespread pain for at least 3 months;
2. Pain present on palpation in at least 11 of the 18 tender  point sites as identified by the American College of Rheumatology and the  Centers for Disease Control;
3. Evidence of morning stiffness and/or stiffness after sitting for a short period of time;
4. Fatigue is present.

At each visit your doctor should note each clinical symptom and its severity, so that a contemporaneous, written clinical record will be available to Social Security as evidence of the chronicity and severity of your illness and disability.

(Source includes insurancenews.net, 5/8/11)