SSA Patient Comment File

February __, 2008
VIA ELECTRONIC SUBMISSION
Michael J. Astrue
Commissioner of Social Security
P.O. Box 17703
Baltimore, MD 21235-7703
RE: Docket No. SSA 2007-0065
Dear Commissioner Astrue:
The undersigned submit these comments in response to an Advance Notice of Proposed Rulemaking issued by the Social Security Administration (“SSA”) on November 26, 2007. You have asked whether there should be a functional impairment listing for digestive diseases similar to the listings for HIV/AIDS found in Blue Book section 14.08N.
A functional listing impairment would direct the SSA to find disability if the claimant suffers one of the following:
1. Restriction of activities of daily living; or
2. Difficulties in maintaining social functioning; or
3. Difficulties in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
Many patients with digestive diseases would meet one or all of these criteria for the functional listings. Indeed, the three types of functional impairments run in concert with each other most of the time. As patients who have been diagnosed and living with digestive diseases, we are respectfully submitting this document to assist you in fully appreciating our most disabling health issues.
The comments presented here will be from patients with Inflammatory Bowel Disease (“IBD,” which includes both Crohn’s disease and ulcerative colitis) and Ostomy patients.1
1 Please note that every signatory to these comments has not experienced everything mentioned here. For example, there are IBD patients who have not had ostomies, and ostomates who have not had IBD who sign onto this document. There are Social Security beneficiaries and applicants, and there are others who have never applied for Social Security disability, although this always is a possibility in the future for many of us. Just as our illnesses are different, as explained below, so, too, are our circumstances. Still, the issues addressed here touch each of us in at least one way and, thus, we are signing onto this document.
DRAFT
I. Introduction: Patients’ View of the Social Security Disability System
In many cases, IBD and/or ostomy patients no longer are capable of employment. All too often, we are denied Social Security disability – both SSDI and SSI -- because we don’t meet the definitions the SSA has formulated. It can take us several tries to apply and appeal, and in some cases, the process can last years. During this time, we still cannot work and, thus, often have no income or health insurance. Even if we are granted Social Security disability benefits, the backlog of legal, medical and other expenses have too often cost us the very homes we lived in.
Many digestive disease patients push ourselves for years, moving from job to job before realizing that we no longer can hold a job, or cannot be hired because the work place cannot meet our accommodations, and/or become too sick to hold the job we were hired to perform.
The last thing most of us want to do is apply for Social Security disability even though we’ve paid into it for many years through our W-2 or self employed income taxes. Many of us hold off applying for Social Security disability because it is well known that the process is so difficult, and can be cruel at times. IBD patients are denied in 67% of first tries according to a May 2005 GAO report. We avoid applying until we no longer can do so. Many applicants are not educated on the application process itself. It is intimidating.
When we decide that we can no longer wait, we swallow our pride, gather our evidence, and go through the application process. Although the intake process used to provide the opportunity for a face-to-face interview at an SSA office, this option has been removed as a tool to have human contact, making it far more difficult for intake workers to observe how ill we really are. SSA now uses impersonal and short phone interviews to begin the application process. Then, the application packet arrives and is overwhelming not just to someone who is very ill, but also to a healthy person who may be trying to assist us. The questionnaires are not designed for patients with chronic conditions, and the spaces allotted in which to ”prove” our cases provide little writing or typing space. Digestive disease patients have a diverse and lengthy set of complications as part of their disease. Many applicants do not realize that we can submit neatly typed attachments to their application rather than using the “back of the page” as the application instructions suggest.
Similarly, IBD and ostomy patients face frequent reviews by SSA, which fails to realize that our functional limitations often are permanent. We who are already on Social Security disability are scrutinized on review because we appear healthier than when we initially were found eligible. However, our situations are tenuous. Forcing us off benefits and into the workplace may cost us whatever small gains we have made in managing our health challenges. For some of us, the disability is permanent. SSA does not currently recognize this.
In addition, the existing listings for digestive diseases are “one size fits all.” We IBD patients who have reached remission through medication may find ourselves able to try
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and work again, as may those of us with ostomies. Most of us want to work! There is more to this desire than just bringing money home to the family. It is a matter of job satisfaction in careers we are skilled at and, most importantly, our desire to work is linked to our self-esteem. There are also instances in which we may need benefits for only a periodic interval. Each of our diseases is as unique as a fingerprint. These differences occur regardless of common diagnoses. At all times, the lives and health of digestive disease patients are a “house of cards” which can, without much reason, fall to pieces suddenly. Having “one size fits all” listings of impairments that anticipate a static situation leaves many of us out in the cold. A functional listing impairment would go a long way toward correcting this – it would direct SSA to consider what we can do, not just the name of our disease or condition.
Chronic illnesses are different from diseases that can be cured and diseases that are considered fatal, and the existing listings do not recognize that. In the Social Security application questions, the words “date of illness or injury” is repeated. However, this does not fit us. We have a chronic illness or condition that has no clear beginning point, and no end. It is crucial to understand that IBD cannot be cured. Those of us who are very ill, or missing a substantial portion of our intestinal organs, never will recover. For example, we Crohn’s patients with disease involvement in our small intestines are likely to have a more difficult course of disease when medications fail us and surgery becomes the only answer, sometimes resulting in “short bowel syndrome.” The more small intestine has been removed, the more difficulty functioning we have. In fact, the most endangered among us are those who have lost our entire large intestine to the disease (see ostomy below), and then the illness begins to attack our small intestine. We may have difficulty performing the activities of daily living, socialization, and the ability to focus and concentrate well enough to complete tasks in a timely manner. Most assuredly, nutrition and hydration maintenance is the top priority of a digestive patient who has short bowel syndrome. Parts removed or non-working parts take away the ability to be employed. Some have had surgical resections. Some have had J- or S-pouch diversions. Those of us in these situations have all three functional impairments even when we don’t meet the technical listing for IBD or short bowel syndrome.
We who are ostomates have our own set of issues that affect the ability to function. There are several types of ostomies, including ileostomy and colostomy with an exterior stoma (Brooke design) requiring ostomy pouches, as well as internally built continent diversions (J Pouch, S Pouch, W Pouch, Koch, and BCIR to name the most common) from their large or small intestine. Some of us who are ostomates are fortunate enough to function quite well; others do not, and still others have conditions that vary over time. Although there is no listing for ostomies per se, we ostomates may well face obstacles to full functioning that render us unable to work. A functional impairment listing would allow those of us who should be eligible for benefits to obtain them in a timelier manner, without hearings and appeals and trips to the courthouse.
To summarize, some of us who are IBD and ostomy patients at some time in the course of our lives will be unable to perform the activities of daily living, socialization, and concentration sufficient to complete tasks in a timely manner even if we do not meet the
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one of the existing listings for digestive diseases. Part II will specifically discuss the obstacles that IBD and ostomy patients face.
II. Functional Limitations Experienced by IBD and Ostomy Patients.
The following conditions are common impediments to digestive disease patients experienced in part or whole because digestive disease patients are often not able to predictably or consistently control our disease and our body’s waste.
A.
Diarrhea, Incontinence, and Leaks
Diarrhea is a fact of life for most IBD and ostomy patients. Although diarrhea is the most common, disabling aspect of IBD, it is not mentioned in the listing for IBD. Ostomates’ output is always loose for an ileostomate, sometimes for a colostomate, and can be corrosive, damaging the skin around the stoma, making adhesion of an ostomy collection pouch difficult. Diarrhea and loose output can be related to medication, disease, nutrition, or lack thereof. We with short gut, who have had much of our small intestine removed, have nothing BUT diarrhea most of the time. Pouchitis is another common infection complication occurring in those of us who have had an internal continence reservoir surgically created out of our own intestine. We who experience chronic pouchitis have issues which can cause urgency, nutrition/absorption of nutrients and medications, fatigue and pain. In some instances, the pouchitis condition is so severe that we requires surgical removal of the reservoir. This causes loss of vital intestinal footage to excise the internal pouch, and more footage used to create another method of bypassing rectal waste elimination for the patient. When an IBD or ostomy patient needs a bathroom, we need it immediately or we may suffer fecal incontinence, leaks, and even a burst pouch.
Digestive disease patients may have “accidents” which require us to leave wherever we are to care for the fecal incontinence. We must go home, ostomates must change our pouch, and take a shower to insure total cleanliness after having an uncontainable or avoidable incontinence episode. Even if we have the best in protection products, at times we cannot guard against having a fecal incident. This is mortifying to experience, yet something we have to accept as possible from time to time. It is bad enough in personal circumstances, even in our own homes, but of more serious implications when we have accidents in the work place. Incontinence affects IBD and ostomy patients on every level of functioning listings.
B.
Malnutrition, Malabsorption, and Hydration
Nutrition issues vary greatly among digestive disease patients and ostomates, due to the localization of an individual’s disease in the gastrointestinal tract, or how much intestine we have remaining after surgeries. Some of us must have small meals numerous times during the day, regardless of the environment we are in – something not all employers allow. Some cannot eat at all during the work day because it would trigger bathroom use
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that would stop every other task at hand. The continuation of this cycle for even short periods of time (weeks or months) leads to weakening of our heath across the board. Employers enforcing “work place rules” that prohibit access to food or water in our work area is a commonly voiced issue among patients. Patients who provide a doctor’s note explaining our needs are not always given adequate accommodation. Asking for accommodation along these lines is often seen as being asked to be “specially treated” over other work-mates, and can mean an easy path to a pink slip.
Current definitions that SSA uses to determine status for SSDI on digestive diseases cover a patient who is too thin, but not patients who are overweight. Many of us are overweight because of disease itself, or medication side effects. There may be disease-related reasons why a patient who can’t ingest nutrition properly may be obese. For many digestive disease patients, an endocrinologist must step in to investigate. A patient who appears to be "overweight" may be denied disability benefits due to societal judgments about weight. SSA must train review personnel to seek medical reasons in each patient’s records as to why there is obesity. It may be a medication such as steroid treatment, or, it may be a chemical imbalance within the body. One cannot assume a patient must be in remission from IBD if we appear overweight. Denial of application based on weight as a measure is an inaccurate tool of “healthy” or “sick.”
C.
Dressing and Collection Pouch Changes
Dressing or pouch changes at urgent or scheduled times require a place of privacy, with sanitary space to do the change. This is not just an ostomy patient consideration; many IBD patients do self directed wound and drainage care during the day. Patients with fistulas also need a dressing change area that is clean and private. Many workplaces do not afford such opportunities.
D.
Fatigue
Patients suffer from fatigue across the spectrum of daily life and employment expectations. Fatigue also can become chronic due to medications we may take. Most certainly, there is chronic fatigue with those patients who have pain as part of our disease. Digestive disease patients often experience fatigue when the patient has had intestinal resection surgery or removal of other organs due to IBD. Moreover, restorative sleep can be lacking in an IBD or ostomy patient due to the fact that we must get up in the night to use the bathroom one or several times. Keeping a schedule to maintain employment is a hardship we face and may be impossible because of these and other sleep issues. A build up of chronic fatigue in those of us with digestive diseases leads to poor health systemically. IBD and its oft-accompanying diseases such as fibromyalgia and other physical and mental (both chemical and emotional) illnesses are validated by medical proof as a direct connection to fatigue.
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E. Restrictions on Physical Activity
We digestive disease patients who have had abdominal surgery often develop hernias. Thus, those of us who have had surgery may be restricted in lifting, pushing, and pulling. In addition, depending on stoma location, we ostomates may have restrictions in bending, crouching, and stretching because such activity can cause the pouch to become dislodged. These restrictions limit our ability to function both at home and at work. Caring for children, cleaning house or food-shopping may be just as difficult as manning an assembly line, working in a greenhouse or managing an office.
F. Emotional Issues
Emotional issues affect a great many of us. We seek mental health care for situational life traumas, or neurological or chemical-based imbalances. Mental health problems are a symptom of the disease(s) themselves. There is emotional deterioration when disease activity remains acute for long periods, which greatly impacts all types of functioning, from the activities of daily living to socialization to concentration.
An otherwise emotionally healthy patient may be severely changed or challenged by psychotic reactions commonly associated with medications like Prednisone, a form of steroid. If a medication that causes this sort of reaction is the only choice in an acute treatment situation, the patient traditionally has been left unsupported through an experience that we did not anticipate.
We digestive disease patients who seek mental health support are commonly diagnosed with Post Traumatic Stress Disorder. We are introduced to our diseases at various life ages and stages. The self-esteem or belief system a person had before sickness came into our lives will affect us moving forward. If we have repetitive medical trauma and personal losses, we are at risk to suffer deeply in areas of esteem, socialization, and work place performance.
These emotional issues have a natural overlap with medications and side effects. Clinical and other types of depression are medically validated for many digestive disease patients. We have either built our emotional coping skills, or for whatever reason we have not had the assistance needed to build these skills. We only know that we are highly vulnerable to emotional disruptions. Marriages and employment relationships deteriorate at a higher rate than “healthy” people facing emotional challenges do. Put another way, we dance as fast as we can and it is never fast enough.
We ostomy patients may also suffer emotional and psychological problems after surgery. For some of us, the altered elimination of body waste and its disturbance of our body image is impossible to overcome, and we are left with feelings that we never can be clean, never be attractive. Some of us cannot face the thought of leaving our home or socializing, let alone re-enter the workplace as a productive person. Thus, for some of us, the side-effect of life-saving surgery disrupts our sense of self in such a way that we cannot experience any perceived quality of life.
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G. Absenteeism and Working Conditions
Frequent absences are a huge issue. We never know when we will be ill. We do not know how long we will be ill. We do not know if we are going to be ill for self-care at home or need hospitalization, or both. We use up paid and unpaid sick and vacation time. Being sick for two weeks and invoking the FMLA or short term disability (if we are fortunate enough to have disability insurance) becomes difficult, if not impossible.
At any time, a digestive disease patient can have an unscheduled medical emergency requiring surgery, which leads employers to question our reliability. This is a fact of our lives, yet an unknown contingency we must accept. It is crucial that we act to prevent emergent conditions if possible. Sometime we can; sometimes we cannot.
Even when we can get to work, we require the ability to use the bathroom on an urgent basis. Bathrooms must be easily accessible, and time in the bathroom often results in penalties on the job. In addition, needing frequent bathroom breaks can render us unable to perform precisely, and to “complete tasks in a timely manner due to deficiencies in concentration, persistence, or pace.” For an ostomate, an explosive leak can cause a situation that cannot be remedied in the workplace, but requires immediate departure for home for a shower and change of clothing in order to be clean, odor-free and sanitary.
In addition, we have serious hygienic concerns in the workplace. IBD, and especially some of the medications used to treat IBD, often lower a digestive disease patient’s immune system to highly vulnerable status. Thus, we are vulnerable to germs. It is impossible to control a work environment to maintain germ reduction. Nor is it socially acceptable to be outwardly proactive in protecting our sanitation standards without social backlash; many of us experience being perceived as “germ phobic” or viewed as hypersensitive, or even obsessive/compulsive.
H. Medication Schedules and Side-Effects
Maintaining a required medication schedule, i.e. stopping at precise times of the day to ingest or perhaps inject medication, is impossible in many jobs. Privacy and hygienic conditions are not always available. Accommodation of medication instructions is necessary because some medications must be taken with food, or carry other prescribing instructions which would affect the ability to concentrate and complete tasks in a timely manner. Some digestive disease medications, such as the new biologics like Remicade, can only be delivered in a hospital or clinical setting. This may take a number of hours during the business day to complete. It may require a set number of days off per calendar schedule, per medication type, per dose and per side effects from medication delivery. And schedules of medication delivery may change with little or no notice for ourselves, and therefore for our employers.
Medication side effects add to or create further digestive disease or other non-digestive conditions causing non-functional fit to the guidelines we are addressing.
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I. Co-Morbidity (or Life as a Patient with an Autoimmune Disease)
Other diseases that can inflict an IBD patient include arthralgia, fibromyalgia, iritis and uveitis, gall stones, kidney stones, multiple sclerosis, lupus, rheumatoid arthritis – essentially, any of the autoimmune diseases. It is many of our experience that, during the initial disability determination, the effects of combinations of impairments that do not, alone, meet a listing are often missed. An IBD patient who also has fibromyalgia may not meet the strict IBD listing or a listing under musculo-skeletal impairments, but the two conditions may be disabling when considered together. A functional impairment listing would direct SSA to consider the combined effects of these illnesses on the ability to function.
J. Pain
IBD in and of itself physically hurts, and pain is a part of the picture for many of us. Daily function, workplace performance, driving and clear thinking all goes into the danger zone if pain science is not addressed or accessible to a digestive disease patient. When in a flare, the pain is real and debilitating. Thus, pain and sometimes, pain medications, affect our life spectrum of abilities. Clouded minds, ability to focus, emotional reactions that may be considered "over reactions,” including crying, anxiety, and other neurosis, can over-lap each and every section of these comments. It starts with pain and ripples out from there.
There are many causes for pain with IBD. In addition to the pain caused by the inflammatory process itself, internal adhesions may form for a long time before we become aware of the issue to seek medical assistance. These adhesions and scar tissue formation internally can cause great pain and, thus, impediments in daily life. Bone deterioration brought on as medication side effect or disease progression is painful. Headaches caused by disease or medication origin are common. Bowel obstructions, fibromyalgia, arthritis, kidney stones, gall stones, skin wounds, and infections from diarrhea all are sources of pain for IBD patients.
Bowel obstruction may be a chronic complaint for a number of patients who have had abdominal surgery, with or without the creation of a stoma. Those with a stoma may have the pain of peristomal skin excoriation, peristomal hernia or a prolapsing stoma, which may not be able to be corrected surgically, depending on concurrent health conditions.
Chronic pain can lead to chronic use of narcotic pain medications, which themselves make working and everyday activities such as driving impossible. Sadly, at some point in our medical care, each of us may be scrutinized in ER settings or by other medical personnel as being drug seeking because the extent of our chronic pain is not always understood by medical providers. Patients must guard against becoming drug addicted while also building up a tolerance to medication given to treat someone in acute pain. Yet, pain that is uncontrolled causes fatigue, lack of concentration, irritability, anxiety,
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and depression, all of which undermine our ability to function. A functional impairment listing would direct SSA to take all of these issues into account.
K. Activities of Daily Living
Daily living and routine, as well as interactions with people in the world around us, are not something that we can take for granted after our diagnosis with IBD. Some of the ways that daily tasks and interactions are affected are highlighted below.
Sexual function is part of adult life, but it is a complicated part of life for an IBD or ostomy patient. Each patient has culture, personal beliefs, and behaviors in this area of daily living. With a chronic illness, the layers of complication multiply in intimate relationships. There are self image issues, physical pain, fatigue, or physical conditions such as rectal-vaginal fistulas which may prevent intimacy. Then there is the significant other who is asked to “suffer” too. Even the strongest of relationships become strained.
Daily parenting responsibilities are difficult for us. This is particularly true for parents of pre-school aged children because this age group requires continual needs in their daily activities, inclusive of over-all safety, hygiene, and early education stimuli.
Cleaning a home and participating in home environment upkeep is physically draining or impossible at times. Not having a clean home means we may feel isolated from social activities in our home where we are best able to otherwise enjoy such social interaction. We may have to place “chores” upon the shoulders of the family members in the home, or ask for help from others.
III. Conclusion
All of the above categories are emblematic of daily activities that IBD and ostomy patients do not and cannot perform “normally” at least some of the time. These functional limitations should be considered when making the disability determination.
Commissioner Astrue, in closing, we patients with IBD and/or ostomies thank you for your consideration of this patient commentary from those of us who have sought or could some day seek Social Security disability benefits due to our digestive disease(s).
Respectfully,
Sari Jo Mogol-Legge
Warwick, RI
Crohn’s disease, ileostomy, uveitis
Jennifer Jaff
Farmington, CT
Crohn’s disease
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J. A. Pacitti
Brooklyn, New York
Crohn’s disease
Linda K. Aukett
Westmont, NJ
ulcerative colitis, ileostomy for 37 years
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