ListenBlack people and other people of color who have autosomal dominant polycystic kidney disease (ADPKD) may have trouble finding good care. Barriers to health care, institutional racism, and a higher risk of kidney disease can make getting the care you need challenging.
Racial Disparities in Kidney Disease
About 33% of U.S. adults have kidney disease. If you’re Black, Latino, Asian American, Pacific Islander, American Indian, or Native Hawaiian, your risk may be higher.
“Black and African Americans are three times more likely than White Americans to have kidney disease,” says Sherri Onyiego, MD, PhD, medical director for Equality Health, an organization that helps primary care practices in Texas improve care for people with socioeconomic barriers.
For Latinos, the risk of kidney failure is about 1.3 times higher.
“Some of the risk factors associated with kidney disease include hypertension, diabetes, obesity, and heart disease. These conditions disproportionately impact minorities,” Onyiego says.
Racial disparities in health care play a big role in ADPKD. Poor access to health insurance and medical care can lead to delays in diagnosis and faster kidney damage.
In a recent study, researchers found Black and Hispanic people got kidney failure earlier but had less access to kidney transplants. Compared with White people, Black people had 67% lower odds of getting a kidney transplant before they had dialysis. For Hispanic people, the odds were 50% lower.
People from underserved communities are:
- Less likely to see a kidney specialist (nephrologist) before dialysis
- Less likely to be evaluated and considered for a kidney transplant before dialysis
- More likely to have a worse outcome from dialysis
The key to treating kidney disease is to diagnose and treat it early. If you don’t know you have kidney disease until it’s in a late stage, or if you face treatment delays, it may be too late to slow or stop kidney damage.
Dealing With Racial Disparities
Several national foundations have created programs to deal with these disparities.
The National Kidney Foundation has a patient-focused, community-minded movement called Kidney Equity for All. Their mission is to make sure everyone with kidney disease has access to high-quality, patient-centered kidney care.
“The PKD Foundation has named addressing racial disparities in kidney care as one of our top advocacy priorities for Congress,” says Matt Becka, chief research officer for the PKD Foundation. The foundation also funds community-level initiatives to spread awareness.
“Regardless of these initiatives, there’s still much to understand about disparities in care for Black and Hispanic patients before we can create comprehensive solutions,” he says.
Many experts say we need to see a major change to the whole system – and the people within the system – to end disparities in kidney disease. Community health advocates, patients, families, and the medical community must work together to make real changes.
How to Advocate for Yourself
By learning about ADPKD and the barriers you might face in your care, you can figure out how to best navigate the system and take charge of your health.
Try these tips for self-advocacy:
- Gather information about ADPKD from trusted, reputable sources.
- Learn how ADPKD affects your health and what might happen if you don’t manage it well.
- Understand your treatment options.
- Learn more about lifestyle changes that may help.
- Understand what your situation is and what you need.
- Find out your eGFR (estimated glomerular filtration rate), which measures your kidney’s filtering function.
- Get a referral to a kidney specialist.
- Advocate for a kidney transplant.
- Ask for help. A family member or friend can help you find resources and navigate the health care system.
- Find the right medical care team.
Your Doctor and Medical Team
“Finding an ADPKD specialist is key,” Becka says. Working with someone you trust is especially important, adds Onyiego.
Think of your doctor and medical team as your partners. Take an active role in your health care to ensure your needs and preferences are met.
Schedule regular follow-up visits with your doctor so you can ask questions and talk about concerns. Make a list of questions before appointments.
“Establish a relationship with your doctor,” Onyiego says. “Be open and honest with the team when you have questions and concerns. The only wrong question is the one you were afraid to ask.”
Becka recommends questions like:
- How fast is my kidney disease progressing?
- How will we manage it over time?
- What can I do to manage it?
- What should I expect next?
- What complications should we look for?
- How often should I see my kidney specialist?
- How will we track my condition?
- How often should I get lab work?
- Do I need to see any other doctors to manage my ADPKD?
How to Find a Culturally Competent Doctor
“A culturally competent provider is someone who understands that cultural beliefs and practices can feed into your health,” Onyiego says. “Look for providers who understand this and also display empathy as they discuss your needs.”
Look for these signs of a culturally competent provider:
- They communicate in your preferred language or provide an interpreter.
- They’re open, self-aware, and willing to learn about and from people of different cultures and backgrounds (called cultural humility).
- They provide access to social support and resources for people who’ve gone through trauma.
To find a culturally competent doctor, ask around. “Trusted family and friends, community organizations, and your health plan or insurer can be wonderful resources to help you find a culturally competent doctor who meets your needs,” Onyiego says.
Helpful Resources
These resources may help you get better care.
Community-based resources. If you face barriers to health care, try a community-based organization like a local food bank or housing assistance program. You might be able to get help with applications or figuring out health insurance coverage. Some might also offer free or low-cost health care services.
Local and national organizations. Get involved with local and national initiatives. Volunteer. Join a community. Reach out for information and support. For example, call the PKD Foundation’s Hope Line at 844-PKD-HOPE (844-753-4673) to connect with a support team that can answer your questions and direct you to other resources.
