Ankylosing Spondylitis in Black Americans: Tips for Diagnosis and Treatment
This autoimmune disease may be more severe in Black Americans.
Ankylosing spondylitis (AS) is a disease where the immune system mistakenly attacks the spine. It’s generally more common among white Americans, especially white males. When Black Americans do get AS, the condition may have already progressed further at the time of diagnosis compared to white Americans. Barriers to care may make it harder for Black Americans with AS to get an accurate diagnosis and a more timely treatment plan.
The right AS treatment is critical because “prolonged inflammation can lead to bones in your spine fusing or locking together,” says Maggie Cadet, MD, Rheumatologist in New York City. “It can [even] cause spinal fractures and also lead to permanent disability in the spine.”
Why is ankylosing spondylitis sometimes more severe in Black Americans?
AS may be more severe in Black Americans due to several factors.
1. Under-treatment
One study has suggested that Black Americans with AS may be less likely to be prescribed the most effective treatment options, such as biologics. Instead, they are more likely to be prescribed corticosteroid injections to control flares and reduce symptoms.
Corticosteroids may not be as effective for managing AS and reducing disease progression. They may come with additional health risks when used too often or for too long.
2. Increased risk of comorbidities
Comorbidity refers to having more than one health condition at the same time. Having AS increases the risk of other conditions throughout the body, including:
Heart disease
Eye inflammation
Osteoporosis
Psoriasis
Intestinal disease
Under-treatment may lead to worse inflammation in the body, which may increase the risk of AS complications. Plus, high blood pressure and heart disease are already generally more common in Black Americans than the U.S. population. This combination of risk factors may further worsen the disease burden.
3. HLA-B27
HLA-B27 is a marker that some people have on white blood cells. This antigen has been linked to an increased risk of developing AS. It’s particularly common in white men who have AS. On the other hand, Black Americans with AS are less likely to have this gene, which may delay the proper diagnosis.
Testing for this genetic difference isn’t a bulletproof way of diagnosing AS. You may still have AS even if you don’t have this gene.
What are tips for Black Americans to diagnose and treat AS?
1. Build a good relationship with your doctor
“It’s extremely important to have a good relationship with your doctor who can oversee your regimen [and general health],” says Dr. Cadet.
While healthcare providers in the emergency department may be able to help relieve symptoms or treat AS flares, a primary care doctor or rheumatologist may be more able to provide comprehensive care. A good treatment plan may help prevent flares and slow down AS progression.
2. Find a rheumatologist you trust and are comfortable with
Look for someone who validates you, listens to your concerns, and makes you feel heard.
In general, many people feel more comfortable when working with a doctor from the same race and/or similar culture. It may reduce miscommunications and increase trust.
3. Try telemedicine to work with a trusted rheumatologist remotely
Telemedicine may also help you find a physician you trust (including a rheumatologist of the same race).
“Depending on where you are living, you may not have a Black rheumatologist nearby,” says Dr. Cadet. “If that is the case, you may look for other telemedicine or virtual options.” The hope is to find someone you are comfortable to partner with.
4. Advocate for yourself, bring notes, and talk openly with your doctor
Playing an active role in your healthcare journey may help get an accurate diagnosis and help you find the right treatment sooner. When you can provide more information to give your care team, they may be more able to make informed decisions about your diagnosis and treatment.
For more effective appointments, try the following:
Write down notes ahead of time about your symptoms and when they started or when symptoms occur
Consider keeping a symptom journal to have a better picture of how the condition is affecting you, and bring it to your appointment
Be open with your doctor about your concerns and preferences regarding treatment
Ask your doctor what the treatment goals are and why they are recommending a particular medication
Bring up financial concerns — your doctor may be able to refer you to resources to help you afford your medication
5. Bring a loved one for support
Simply having a friend or family member in the room with you may help you feel less overwhelmed during the doctor visit. They may also be able to help you process and remember information.
6. Seek a second opinion if needed
If you feel like the first doctor you see is not hearing or understanding you, you should feel empowered to seek a second or third opinion. Getting another opinion may also help you feel more confident in your treatment decisions.
The bottom line
AS may have negative effects on your health and quality of life, especially if it goes untreated. In general, the earlier you get a diagnosis and start treatment, the better. If you are struggling with symptoms that seem consistent with AS, seek a doctor who can provide the care you deserve.
- Magdalena Cadet, MDMagdalena Cadet, MD, is a board-certified Rheumatologist in New York. She specializes in autoimmune diseases, arthritis, and health conditions that disproportionately affect women and minorities.
References
American College of Rheumatology. (2023). Spondyloarthritis.
Centers for Disease Control and Prevention. (2024). High blood pressure facts.
National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2023). Ankylosing spondylitis.
National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2023). Ankylosing spondylitis: diagnosis, treatment, and steps to take.
Ogdie, A., et al. (2021). Racial differences in prevalence and treatment for psoriatic arthritis and ankylosing spondylitis by insurance coverage in the USA. Rheumatology and Therapy.
Reveille, J. D. (2011). Epidemiology of spondyloarthritis in North America. American Journal of Medical Sciences.
Strazewski, L. (2021). Why physician diversity matters, and how GME programs can boost it. American Medical Association.
Zhu, Z., et al. (2019). Ankylosing spondylitis: etiology, pathogenesis, and treatments. Bone Research.