Living with AS in United States

Most people with AS in the US are seen by a rheumatologist. Your GP can make the referral. If your GP dismisses your symptoms, it is worth asking specifically for a rheumatology referral and mentioning inflammatory back pain — the specific term matters.

The average diagnostic delay for AS in the US is 7–10 years. Women face longer delays on average. If you have been told your pain is mechanical or stress-related and symptoms match the inflammatory pattern (worse in the morning, better with movement), push for imaging and blood tests (HLA-B27, CRP, ESR).

Biologics (TNF inhibitors and IL-17 inhibitors) are effective for AS but expensive — $25,000–$50,000/year without coverage. Most commercial insurance plans and Medicare cover them, but require step therapy (trying other treatments first).

If denied, appeal. Many people are approved on appeal. Patient assistance programs from manufacturers (AbbVie, Amgen, Novartis, UCB) can help with cost if you are underinsured.

The Spondylitis Association of America (spondylitis.org) has insurance navigation resources and can connect you with patient advocates.

AS can qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) if it severely limits your ability to work.

The SSA evaluates based on functional limitations, not diagnosis alone. Detailed records from your rheumatologist documenting functional impairment are essential.

Many initial applications are denied — approximately 60–70%. Appeals succeed at a much higher rate, especially with legal representation.

Under the Americans with Disabilities Act (ADA), employers with 15+ employees must provide reasonable accommodations for AS. Common accommodations include flexible start times (to allow morning stiffness to ease), sit/stand desks, remote work, and modified duties during flares.

Request accommodations in writing. You do not need to disclose your specific diagnosis — "inflammatory arthritis affecting mobility" is sufficient.