According to the National Organization for Rare Disorders (NORD), nearly 7,000 rare diseases affect close to 30 million Americans. Applying for long-term disability benefits can be especially difficult if you have an uncommon condition because you need to document the existence of specific symptoms of a medically determinable rare disease. Currently, many people with rare diseases experience devastating delays, most up to three years, because those making the decisions are less familiar with such diseases and their debilitating capacities.
Social Security Administration’s Compassionate Allowances (CAL) is a recent initiative that was designed to fast-track Social Security disability applications for 25 rare diseases and 25 cancers that are deemed to be severe. CAL criteria and conditions were developed due to information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts and research with the National Institutes of Health. A few of the conditions that have been included in the initiative are ataxia telangiectasia, numerous cancers and early-onset Alzheimers disease.
Unfortunately, there is a giant number of rare diseases that didn’t make CAL’s cut. Getting long-term disability coverage for rare yet painful and debilitating diseases like carpal tunnel syndrome, fibromyalgia and Lyme disease remains difficult, largely because the Blue Book that is used as a reference when determining whether a person with a condition qualifies for coverage does not put as much focus on such rare diseases and their symptoms – therefore making them subjective and difficult to prove.