Commissioner of Social Security

PO Box 17703

Baltimore, MD 21235-7703

Kendi Hubbard Cochrum, President

Joanne M. Hageman, VP

Lupus Connections International

640 Hamby Road

Longview, TX 75605

Dear Commissioner, 6 July 2003

Thank you for providing the forum to comment on this critical issue.
Over the past decade, the officers of our organization, and hundreds of
people we know through patient support groups have struggled to maintain
gainful and part-time employment while suffering with various
overlapping autoimmune diseases. Based on our communications with
patients worldwide, professional organizations, and specialists in the
Rheumatological field, we would like to comment on the methods for
evaluation of immune system disorders.

First, we would encourage consideration of a broader approach to the
current methodology of evaluating disability in lupus patients and those
patients with overlapping autoimmune diseases. As it stands, the lupus
patient is evaluated primarily on medical documentation including lab
work and physicians notes. We strongly feel that the daily and flaring
symptoms experienced by the lupus patient, in particular, be taken into
greater consideration. It is the combination of symptoms and treatments
that makes maintaining gainful employment impossible.

The symptoms list, (See attachment A), has been developed by patient
history\'s offered to Lupus Connections International to further patient
understanding and support. This is a list of symptoms experienced in the
lupus patient and is not all inclusive. Each symptom can effect a
persons ability to work effectively in a full-time position. For some
lupus patients, and during times of flares, part-time positions can be
nearly impossible. Medications offered to patients for pain and
inflammation for example can produce side effects, such as organ damage,
accelerated hardening of the arteries, elevate blood pressure and other
symptoms. We have not included symptoms based on medications and
treatment in attachment A.

We also feel that the following two recommendations be taken into
serious consideration during the evaluation process. First, lab work
cannot accurately predict the severity of the disease in the patient.
Treatment such as steroids and chemotherapy drugs can alter lab results,
producing false negatives and postives. Secondly, the socio-economic,
genetic predisposition and environmental stressors the average lupus
patient endures excerbates their disease. With the Lupus registries and
health studies, perhaps those triggers will be revealed.

The complexity of overlapping autoimmune symptoms makes for a difficult
diagnosis.To physicians untrained in immunological disorders and to the
general public, the lupus patient looks healthy. This puts an enormous
emotional strain on the patient. Unless, symptoms are present at their
physicians appointment, the patient is often misdiagnosed. Family
relations are often strained as believability and chronic illness tests
the bests of relations, driving the lupus patient into isolation.

Accessing quality physician care is difficult, and the diagnosis can
take years during which time physicians must rule out many other
possibilities and refer the patient to specialists. Patients we have
spoke to are not encouraged to list their full array of symptoms at each
doctors visit, but are asked only to discuss the most serious or the
most painful symptoms. In fact, lupus patients are for the most part
treated symptomatically by several different doctors and is rarely
treated by a team of specialists able to manage their care collectively.

As a patient focused organization we would also like to comment on
patients who are able to work. We have read through the Ticket to Work
program and find it impressive. Upon sharing this program with patients,
we have found measurable apprehension of the reapplication process,even
though it is expedited. Lupus patients may need more sick time allowance
than the average worker, despite their part time status. The office
environment can be intolerable to the lupus patient with
photosensitivity and mobility issues if the office has no allowance for
those modifications.

As for any suggestions we may have as an organization and as individual
patients with lupus facing disability, we would very much like to work
part-time continuing what we do, which is offering patient understanding
and support, disease management, and networking patients with others.
Our obstacles are not unique to the lupus patient. We are often too ill
to write, think clearly or provide for our families. This letter took
two of us two months to write, and we hope it furthers the understanding
your agency has of our plight.

Thank you for your consideration,

Kendi Hubbard-Cochrum, President

Joanne Hageman, Vice President

Lupus Connections International

**Attachment A.**

Lupus related symptoms that may occur on a daily basis and during
flares.

Anemia

Anti-Phospholipid-Antibody Syndrome

Anxiety

Arthritis

Atherosclerosis

Bells Palsy

Benign paralysis

Bladder infections

Blood clots

Carpal Tunnel

Cerebral blood vessel inflammation

Chest pressure and pain

Childhood respiratory disease history (Chronic respiratory infections,
Mononucleosis)

Childhood severe growing pains

Chronic fatigue

Coexistent depression

Cognitive dysfunction

Chronic Flu-like symptoms

Chronic Mononucleosis-type symptoms

Chronic, burning, pain

Cysts

Disordered thinking

Dry mouth / eyes

Electric shock sensation / intensified systemic static

Exercise intolerance

Fear (Constant)

Fibromyalgia

Hair loss

Headaches

Heart disease

Hormonal imbalance

IBS

Interstitial cystitis

Joint swelling, pain, infection, and necrosis

Kidney disease / failure

Lesions on the skin

Lymph node swelling

Lymphoma

Memory loss (severe short and long term)

Migraine

Mitral valve prolapse

Mouth ulcers

Muscle pain and weakness

Myocarditis

Nasal ulcers

Nausea

Neurological dysfunction

Numbness (Digital, Limbs)

Peripheral neuritis

Pericarditis

Photosensitivity / UV light sensitive

Pleurisy

Pregnancy disorders / multiple miscarriages

Psychiatric syndrome

Rashes (Malar, and other)

Raynauds (cold intolerance)

Scleroderma

Seizures

Serositis

Sinus problems

Sleep disorders

Sjogren's Syndrome

Speech dysfunction

Stroke

Sunstroke

Thyroid disease

Unexplained fever

Urinary tract infections (chronic)

Vasculitis

Vertigo

Visual Problems

Weight gain

Weight loss (sudden)