An ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will review selected conditions related to the immune system and produce a report addressing the current status of the diagnosis, treatment, and prognosis of those conditions based on published evidence (to the extent possible) and professional judgement (where evidence is lacking):
1. Provide an overview of the current status of the diagnosis, treatment, and prognosis of select immune system disorders, including Systemic Lupus Erythematosus, Scleroderma, Polymyositis, Sjogren’s syndrome, and Inflammatory Arthritis, but excluding HIV, in the U.S. population and the relative levels of functional limitation typically associated with the immune system disorders, common treatments, and other considerations.
2. For the immune system disorders identified in task 1, describe to the degree possible:
a. The average age of onset;
b. The professionally accepted diagnostic techniques used in identifying immune system disorders (for example, laboratory and clinical findings) and how the techniques differ for adults and children (if applicable);
c. The methods for differentiating clinical severity (for example, classifiers such as “moderate” or “severe”), how the methods are determined (for example, by specific laboratory findings), and what the methods mean in terms of treatment, prognosis, and functional limitation;
d. The usual course of the disorder, including any differences in the course of the disorder for adults and children (if appropriate);
e. The likelihood, frequency, and duration of changes in the severity of symptoms such as flare-ups or remissions (if appropriate);
f. The possibility and likelihood of reducing the severity of symptoms (if appropriate), and the treatments or circumstances that lead to marked improvement;
g. Secondary impairments that result from either the immune system disorder or the treatment (if appropriate).
3. For the immune system disorders identified in task 1, identify the types of treatments available and describe to the degree possible:
a. The clinical practice guidelines for receiving the treatments;
b. The settings in which the treatments are provided;
c. What receipt of the treatments indicates about the severity of the medical condition;
d. The likelihood of improvement when receiving the treatments and the period over which the improvement would be expected; and
e. Any limitations on the availability of the treatments (other than due to financial circumstances or the patient’s election), such as whether treatments are considered experimental, remain in the trial phase, or are only available in certain geographic areas.
4. For the immune system disorders identified in task 1, provide a summary of select treatments currently being studied in clinical trials.
5. For the immune system disorders identified in task 1, identify to the degree possible the functional limitations associated with each disorder, including physical functioning limitations, mental functioning limitations, limitations resulting from common treatments, and variations in functioning (for example, during flare-ups vs. remission), and how such limitations would present in a typical medical record.
The report will include conclusions but not recommendations.
In the report, when terms such as “severity” or “severe” are used, the committee shall identify to the degree possible whether the term is being used with SSA’s program definition or as it is used in the clinical or research settings, so as to avoid reader confusion, and, if necessary, will specify the pertinent differences between the two definitions.
The committee shall not describe issues with respect to access to treatments due to financial circumstances, including insurance limitations. While SSA recognizes some patients may have difficulty accessing care or particular forms of treatment due to financial circumstances, others do successfully access those treatments. SSA may receive information about those treatments in the medical records SSA considers when making disability determinations and conducting continuing disability reviews. SSA understands improvement is not certain in all cases. SSA makes individual decisions on each case based on all the evidence they receive.