Alport syndrome
Alport syndrome affects a protein that helps form structures in the kidneys, ears and eyes. Genetic testing can help confirm a diagnosis, but cost, insurance coverage and access to testing may delay answers for some patients.
Rare kidney diseases and kidney health equity
Learn how barriers to diagnosis, treatment and support can affect people with rare kidney diseases and what can help close these gaps.
Rare kidney diseases can be difficult to diagnose and treat. Many require specialized testing, experienced healthcare professionals and ongoing care, and access to those resources is not equal for everyone. A person's income, insurance coverage, location, language, access to specialists and experiences within the health care system can all affect how quickly they get answers and treatment.
Why does health equity matter for people with rare kidney diseases?
Rare kidney diseases include inherited conditions, autoimmune diseases and diseases linked to changes in genes. Many require specialized care that may be difficult or expensive to access.
Social drivers of health can affect how quickly someone gets answers and treatment. These include:
- Economic stability: The cost of medicines, testing, transportation or time away from work
- Health literacy: Understanding symptoms, test results and treatment choices
- Health care access: Finding specialists, getting referrals or receiving insurance approval
- Where someone lives: Living far from specialty or transplant centers
- Social and community factors: Language barriers, discrimination, limited support or having symptoms dismissed
These barriers can be especially challenging for people with rare kidney diseases, where delays in diagnosis or care may have a major impact on health.
By the numbers
About 22% of non-Hispanic Black adults have chronic kidney disease (CKD), compared with about 13% of non-Hispanic white adults and 12% of Hispanic adults. Black Americans are also more than four times as likely as white Americans to develop kidney failure. For people with rare kidney diseases, these broader disparities can be compounded by the need for specialized testing and care.
Why diagnosis may take longer for some people
Rare kidney diseases may not be the first conditions considered when someone has symptoms or abnormal kidney test results. Getting a diagnosis may require a nephrologist, kidney biopsy, genetic testing or other advanced tests. Cost, insurance approval, transportation and limited access to specialists can cause delays. Bias and language barriers can also affect whether concerns are understood and addressed.
Questions to ask your doctor
Depending on your symptoms, test results and family history, you may want to ask:
- What could be causing my kidney problems?
- Do I need additional blood or urine tests?
- Could a kidney biopsy or genetic test help identify the cause?
- Should I see a nephrologist or another specialist?
- Would a second opinion be helpful?
- What treatment options are available?
- Could I qualify for a clinical trial?
If the cause of your kidney disease is unclear, AKF's Know Your Cause resources can help you learn about tests that may identify the cause of kidney damage.
Which rare kidney diseases are linked to disparities in care?
Some rare kidney diseases show how genetics, access to care and broader health inequities can overlap.
Polycystic kidney disease
Polycystic kidney disease (PKD) causes fluid-filled cysts to grow in the kidneys and can lead to kidney failure. Knowing that PKD runs in a family can help people seek testing earlier, while limited access to specialists may delay diagnosis.
APOL1-mediated kidney disease
APOL1-mediated kidney disease (AMKD) is associated with certain APOL1 gene variants found primarily in people with Western and Central African ancestry. Access to genetic testing and specialists familiar with AMKD can affect how quickly someone receives an accurate diagnosis.
IgA nephropathy
IgA nephropathy (IgAN) causes inflammation that can damage the kidney filters. Delayed follow-up, inconsistent testing and limited access to kidney specialists can make early diagnosis harder.
Lupus nephritis
Lupus nephritis is kidney inflammation caused by lupus. Lupus and lupus nephritis affect some racial and ethnic groups more often, including Black, Hispanic or Latino, Asian American and Native American people.
Focal segmental glomerulosclerosis (FSGS)
FSGS causes scarring in the kidney filters and is more common among Black Americans. Diagnosis usually requires a kidney biopsy, which can create another barrier when specialty care or insurance coverage is limited.
What should treatment and support look like?
Rare kidney diseases may affect more than the kidneys, so care can involve several specialists. The care plan should also consider factors such as transportation, language, food access, insurance coverage and financial stress. Patients should be able to ask questions, understand their options and participate in decisions about their care.
Access to treatment and transplant
Cost, insurance coverage and access to specialists can make treatments difficult to obtain. Black and Hispanic people are also less likely than white people to receive a kidney from a living donor. AKF's Living Donor Assistance Program can reimburse eligible living kidney donors for certain out-of-pocket expenses associated with donation in participating locations.
Food for everyday kidney care
Kidney-friendly eating should fit into daily life and consider cultural foods, family traditions, budget and food access. AKF's Kidney Kitchen® offers kidney-friendly recipes, meal planning information and nutrition resources.
Find support and take action
Living with a rare kidney disease may involve searching for answers, finding specialists, managing treatment and navigating insurance or financial concerns.
AKF offers resources that can help:
- Explore rare kidney diseases to learn about specific conditions, diagnosis and treatment.
- Learn about clinical trials and opportunities to participate in research.
- Join the Rare Kidney Disease Action Network to connect with advocacy efforts for people affected by rare kidney diseases.
- Explore Kidney Health for All to learn more about inequities in kidney care.
Resources
Resources and tools
Learn about preventing and managing kidney disease.
- Talk to Your Doctor Guide
- Home Dialysis Decision Aid
- Talk with your patients about home dialysis: Learn the OARS technique
- Your guide to kidney transplants
- Post transplant toolkit
- Genes to Generation: Know your family’s health history
- Talk With Your Patient about Clinical Trials
- Talk To Your Doctor about Clinical Trials
- Organ and Tissue Donation Myths Debunked
- Kidney Health for All resources