Category: Family Health

Genetic testing can help identify if you are a carrier for genetic mutations linked to certain genetic forms of kidney disease. If you don’t know the cause of your kidney disease, genetic testing can help you determine the cause. Knowing the cause of your kidney disease can help you and your healthcare team create a personalized treatment plan. It can also clarify family risk, aiding in family planning and early detection for relatives. Additionally, genetic testing may provide access to clinical trials, offering new treatment options. Understanding the genetic cause of CKD empowers you and your providers to make informed decisions about care and disease management. 

Up to 3 in 20 people with chronic kidney disease do not know the cause of their disease. And some people may be diagnosed with the wrong cause of their disease. Knowing the cause of your kidney disease can help you and your ​health care team create a personalized plan to help you manage your disease.  

Many kidney diseases have a genetic cause, spanning from more common conditions like polycystic kidney disease (PKD) to more rare disorders such as Fabry disease. Identifying if there is a genetic cause is crucial as it helps to provide a more accurate diagnosis, ensuring that the treatment you receive is tailored to your specific condition. In addition, this can help you understand the progression of your disease over time. For example, some forms of kidney disease can get worse quickly and lead to kidney failure and some affect your kidneys at a slower pace. This will help you prepare for treatment options for your disease.  

Genetic testing can also help you understand a family history of kidney disease. Half of your genes came from your mother, and the other half from your father and it is possible they passed down a gene variant that causes kidney disease. Genetic tests can give providers more information on how the disease can be inherited or passed down from one generation to the next. Many patients find this information helpful, especially for family planning.  

Genetic testing could also help you see if you are eligible for a clinical trial. Clinical trials are research studies that study the effectiveness of new treatments. Clinical trials may help you learn more about your disease and gain access to new and possibly effective treatments or medicine available only to those participating in the trial.

Genetic testing is a useful tool in understanding why you have kidney disease, and it can guide providers in their treatment decisions. 

Public health insurance

These plans are funded by the government and help certain groups of people:

• Medicare: Medicare is a federal health insurance program for people who are 65 or older or who have certain disabilities or kidney failure, also called end-stage renal disease (ESRD) or end-stage kidney disease (ESKD). There are different parts of Medicare that cover different types of care, including hospital stays and prescription medicines.
• Medicaid: Medicaid is a government program that provides free or low-cost health coverage for people with limited income and resources. It covers eligible adults, children, pregnant people, older adults and people with disabilities. Medicaid rules and benefits vary by state. Many people with kidney failure qualify for both Medicaid and Medicare. This is called being dually eligible. If you’re dually eligible, Medicaid can help pay Medicare costs and provide extra coverage for services not fully covered by Medicare, like long-term care.

Other health insurance programs include:

How much does health insurance cost?

The cost of health insurance can vary a lot depending on the type of plan you have, where you live and how much health care you need. When choosing a plan, it’s important to think about what you pay every month and what you might have to pay when you get care.

There are a few key terms that can help you understand how much your plan might cost. Knowing these terms can help you choose the plan that’s right for you.

• Premium: Your premium is the amount you pay, usually monthly, to your insurance company to have health insurance. It’s like a membership fee.
• Out-of-Pocket Costs: These are the expenses for medical care that you pay for, even if you have health insurance. This usually includes a fixed amount you pay for a covered service, like a doctor’s appointment, prescription or lab work. After paying the fixed amount, your insurance covers the remaining cost.
• Copay: A set dollar amount you pay for a covered health care service, which could include a doctor’s visit, prescription or lab test.
• Deductible: The amount you must pay out-of-pocket before your insurance plan starts to pay.
• Co-insurance: This is your share of the costs for a covered health service, calculated as a percentage. After you’ve met your deductible, your insurance plan will pay a percentage of the bill, and you’ll pay the rest.
• Benefits package: The set of health care services and items your health insurance plan covers. It includes things like doctor visits, hospital stays and medicine. Each insurance plan has a different benefits package, so it’s important to read the details to know what’s included and what’s not.
• Flexible Spending Account (FSA): A benefit offered by some employers that lets you set aside money from your paycheck before taxes are taken out. You can use this money to pay for health care expenses like copays and medicines.
• Health Savings Account (HSA): A special savings account you can use to pay for certain medical costs. You must have a high-deductible health plan (health insurance with lower monthly costs, but you pay more yourself before insurance starts helping) to open an HSA. The money you put in is not taxed, and you can use it for things like doctor visits and medical supplies.

Who can help you understand your insurance plan?

If you’re feeling overwhelmed, there are people who can walk you through your options, answer questions and help you make informed choices.

• Benefits coordinators: These specialists at hospitals and clinics help you understand what your insurance covers and can assist with applications for financial help or secondary insurance.
• Social workers: Social workers at hospitals and clinics can explain insurance options and connect you to support programs like Medicare, Medicaid and disability benefits.
• Human resources (HR): HR staff at your workplace can explain your job-based plan, help with enrollment and answer questions about what’s covered and how to make changes.
• Insurance company representatives: You can call your insurance provider to help understand your benefits, in-network providers, prior authorization or billing questions.
• Marketplace navigators: These trained professionals offer free help to apply for plans on the Marketplace and understand your health coverage.

Does health insurance cover CKD?

Most health insurance plans generally cover the diagnosis and management of chronic kidney disease (CKD), because there are protections in place for people with pre-existing conditions (health problems you had before you started a new health insurance plan).

Private insurance companies  usually cover:

• Office visits with a primary care doctor or nephrologist
• Routine blood and urine tests
• Medicines
• Access to in-network specialists (doctors or health care professionals) who have an agreement with your health insurance plan to provide services at a certain cost.

Each plan is different, so it’s important to check your plan’s summary of benefits to see what kidney-related care is covered. Check your insurance company’s website, your employer’s HR department or the government-run Health Insurance Marketplace to learn how to access your summary of benefits depending on what kind of insurance you have.

Medicare

This public health insurance program helps cover health care for people who are 65 or older, those living with certain disabilities or kidney failure. If you have kidney failure, Medicare helps cover the services and treatments you need to manage your condition. This includes dialysis (in the hospital, outpatient or at home), kidney transplants, training for home dialysis and related supplies and medicine. 

Medicare is divided into four parts. Each part covers specific types of care: 

• Part A (Hospital insurance): Helps cover inpatient care in hospitals, tests, hospice and some home health care, including inpatient dialysis and kidney transplant surgery
• Part B (Medical insurance): Helps cover outpatient care like doctor visits, lab tests, dialysis doctors’ fees and anti-rejection medications (immunosuppressants) after kidney transplant
• Part C (Medicare Advantage): A private insurance plan bundled with Medicare that may offer extra benefits. Coverage for kidney failure depends on the plan and where you live, so check carefully
• Part D (Prescription coverage): Helps cover the cost of prescription medicines and in-home dialysis

Things Medicare does not cover: 

• Paid aides: People you pay to help you with daily tasks or medical care at home, like setting up dialysis or helping you move around
• Lost income or caregiver pay during dialysis training
• Housing during dialysis treatment 

Medical Supplement Insurance (Medigap)

Since Medicare doesn’t cover everything, you can also buy Medigap from a private company to help pay for things like deductibles and copays that Medicare doesn’t fully cover.

Medicare eligibility timeline
Medicare eligibility depends on your age, health and sometimes your work history. Here’s a simple look at when you might qualify for Medicare based on your health or age.

• Standard age-based eligibility
  • Initial enrollment period starts three months before your 65th birthday month
  • Ends three months after your birthday month
  • If you miss this 6-month period, you still may qualify for special enrollment if you meet certain requirements, such as losing employer insurance or moving
• Disability-based eligibility (under age 65)
  • You qualify if you’re receiving Social Security disability insurance
  • You qualify after 24 months of benefits
• Work history requirements: Medicare Part A (hospital insurance) is typically free if you’ve worked and paid Medicare taxes for 10 years. If you have less work experience, you can still get Part A, but you’ll need to pay a monthly premium.
• Kidney failure eligibility: Even under age 65, you can access Medicare sooner if you are in kidney failure.
  • Dialysis
    • Standard wait: Medicare starts on the first day of the 4th month after beginning in-center dialysis
    • If you’re in a Medicare-certified home dialysis training program within the first 3 months, coverage can start the first month of dialysis.
  • Kidney transplant
    • Medicare can begin:
      • During the month of the transplant, if the kidney transplant or necessary hospital stay occurs that month or within 2 months
      • Up to 2 months before transplant, if you were hospitalized earlier

If you are over 65 and have Medicare coverage for kidney failure, it will end 12 months after you stop dialysis or 36 months after a successful kidney transplant. Your Medicare coverage will resume if you start dialysis again or get a kidney transplant within 12 months after you stopped getting dialysis.

ACA Plans 

The ACA helps more people get affordable health insurance. It created the Health Insurance Marketplace where you can shop for and compare plans. All ACA plans must cover important health services, including care for chronic conditions like kidney disease. These plans are sold by private insurance companies, but they follow rules set by the government to protect you.

• Essential Health Benefits: These are services all ACA plans must cover, such as outpatient care, hospitalization and prescription medicine.
• Yearly or lifetime limits: ACA plans are not allowed to set yearly or lifetime dollar limits on essential benefits, like hospital visits or prescription medicine

Unlike Medicare, there isn’t a specific enrollment period tied to age or a set timeline for applying for Medicaid. You can apply for Medicaid at any time of the year. Eligibility is based on need instead of age.

Developments in kidney transplants 

There are more than 103,000 people on the waiting list for a kidney transplant and there aren’t enough kidneys for everyone who needs them. However, scientists are exploring new ways to make transplants more accessible. Only about 1 in 3 people waiting received a transplant last year.

Artificial kidneys

Scientists are working on developing lab-grown kidneys and new machines to give people with kidney failure options other than going on dialysis and waiting for a kidney transplant. Artificial kidneys grown from a patient’s own cells are designed to work like real kidneys without the risk of rejection.

They could be available as soon as 2030.

Genetically modified pig kidney transplants in humans (Xenotransplantation)

Another innovation researchers are testing to make kidney transplants more accessible is through xenotransplantation. Xenotransplantation uses cells, tissues, or organs from animals to treat medical conditions in humans. In 2025, the FDA approved the first clinical trials to genetically modify pig kidneys for people with kidney failure to reduce the risk of rejection and help them function in the human body. In November 2024, a woman became the third person to receive a gene-edited pig kidney and is still doing well.

Additional resources:

Teaching the immune system to accept transplants

A new trial is testing a one-time cell therapy (MDR-101) that could help kidney transplant recipients live without anti-rejection drugs. Conducted between March 2018 and April 2024, the treatment uses the donor’s stem cells (special cells that can turn into many different types of cells in the body) to retrain the immune system to accept the new kidney as its own. 

3D kidneys

Mayo Clinic researchers use 3D bioprinters to create living models of skin, cartilage, and organ tissue using medical imaging and patient-specific cells. These tissue models help scientists study disease, test treatments, and develop future transplant solutions. While still in development, this technology offers real hope for patients facing organ failure or donor shortages.

Some transplant innovations mentioned here are experimental or in early testing. Speak with your transplant team to understand what options may be available to you now.
 

The pancreas is a gland behind your stomach and in front of your spine. It produces enzymes that help break down food and hormones that control blood sugar levels.

Pancreatic cancer usually begins in these cells. It forms when cells grow out of control and create a tumor. Tumors may be malignant (cancerous) or benign (not cancerous).

Two kinds of pancreatic cancer

About 95% of pancreatic cancers begin in the cells that produce digestive enzymes. This is known as exocrine pancreatic cancer.

Only about 5% of pancreatic cancers begin in the cells that produce hormones. These are known as endocrine pancreatic cancer. Tumors that form in these cells are called pancreatic neuroendocrine tumors (NETs). Pancreatic NETs have a better prognosis (outcome or course of a disease).

 

Who is at risk?

There are many risk factors for pancreatic cancer, including:

What are the signs and symptoms?

Pancreatic cancer is hard to spot early because it may not cause any signs or symptoms. As the cancer grows, possible symptoms include:

• Jaundice (yellowing of the skin and whites of the eyes)
• Light-colored stools
• Dark urine
• Pain in the upper or middle abdomen and back
• Weight loss for no known reason
• Loss of appetite
• Fatigue

Pancreatic NETs may have different signs and symptoms. They may also cause the body to make too much of the hormone cortisol, leading to Cushing syndrome.

These symptoms may be caused by other conditions, too, so it’s important to discuss any concerns with your doctor.

How is it diagnosed?

Your doctor will likely do a physical exam and ask you about your symptoms and family health history.

Diagnosis is usually done with imaging and other tests to see the pancreas and the area around it. Examples of these tests include ultrasounds, MRIs, CT scans, and taking samples of blood, urine, and tissue. This helps a doctor determine whether it is cancer and, if so, the cancer’s stage (how the tumor has grown or spread).

Many people get a second opinion to help with diagnosis and talk about treatment options. The National Cancer Institute’s (NCI) Cancer Information Service can help you find a doctor or hospital or with getting a second opinion.

 

How is it treated?

Treating pancreatic cancer is determined by the cancer’s stage and may include surgery, chemotherapy, radiation therapy, chemoradiation therapy, or targeted therapy. You and your care team can also plan for how to manage side effects from the treatments and any cancer-related pain.

Researchers around the world are studying new ways to identify pancreatic cancer earlier and improve treatments with support from NCI. Their work includes clinical trials to test these methods and palliative care techniques to improve patients’ quality of life.

Getting support

If you or a loved one are diagnosed with pancreatic cancer, there are many resources available that can help. NCI has advice for managing treatment and its side effects, finding emotional support, and managing daily life. Learn more about coping with cancer on the institute’s website.