Insurance tips when you have kidney disease of an unknown cause

Find tips to help you understand your insurance plan, get coverage for services to find the cause of your kidney disease and how to get help with insurance when you need it.

When trying to find the cause of your kidney disease, health insurance can be a challenge. Health insurance is coverage for the costs of healthcare services that you need, such as doctor's visits, hospital stays, medical procedures, lab tests and more. 

Learn about your health insurance plan  

Each type of health insurance plan may pay different costs for healthcare services, and you may still have to pay some costs. To see what your plan pays for, call your insurance company. Find their number on your insurance card. When you call, you may want to ask these questions: 

  • Does my plan cover treatment for kidney disease or kidney failure, genetic testing and counseling or [other services you need]?  
  • If yes, what services are covered? What services are not covered? 
  • Does my plan cover a second opinion? 
  • If my plan doesn't cover something, how can I request to have it covered? 
  • Do I need a referral to see a specialist? A referral is permission from your primary care doctor or insurance plan to visit another doctor.
  • Do I need prior authorization before getting certain health care services? Prior authorization is permission from your insurance company before you get certain health care services, such as treatments or medical equipment. If you do not get permission before the services, your insurance may not cover the costs. It is also called preauthorization or prior approval.
  • What are the costs for my plan, such as my: 
    • Deductible? This is the amount you pay before insurance starts paying the costs
    • Copay? This is the amount you pay each time you get a health care service, such as a doctor's visit or filling a prescription.
    • Co-insurance? This is a percent of the costs of covered services that you will pay after you meet your deductible.
    • Out-of-pocket maximum? This is the most you will pay for covered services for the year. After you pay this amount, your insurance company will pay all of the costs of covered services.

Check that your doctors are in-network before you see them 

Each plan has a network of providers ("in-network"), which are the doctors, hospitals and other suppliers who contract with your insurance plan to give you health care services at a lower cost. Providers who have not contracted with your plan are called "out-of-network" providers, and you will pay more for their services.  

To see if a provider is in-network: 

  • Go online to your insurance plan's website to find a list of in-network providers. 
  • Call your insurance company to ask.  

Get what you need when you call your insurance company 

Before you call 

  • Write down all of your questions. 
  • Plan to call when you have enough time to be on the phone. You could be on hold for a few minutes or longer. For the shortest hold time, call before 11am on weekdays or on Saturday mornings. 
  • Have your insurance card, your insurance policy and any other documents in front of you. Your insurance company mails them to you and you can find them on your insurance company's website. 

During your call 

  • Write down the date, time, name of the representative you talk with and their answers to your questions.  
  • Speak clearly and calmly. 
  • If you do not understand an answer or the representative cannot help you, ask to talk to a manager. 
  • If the representative will get back to you with an answer, ask how long it will take. 

After your call 

  • Put the notes from your call into a folder or a place where you can easily get to them. Keep all your insurance papers and health records in this place. 

Dealing with health insurance can take a lot of time and effort. Learn how you can get help with your insurance. 

If your insurance does not cover something, request that they cover it 

If a certain specialist or health care service is not covered by your health insurance, you can request prior authorization to have it covered. For example, you could request to have insurance cover: 

  • A treatment or prescription that your doctor says you need 
  • An out-of-network specialist that your doctor referred you to 
  • Medical supplies and devices 

The way to request prior authorization may be different for each plan. Usually, it includes: 

  1. Your doctor writing a letter or filling out a specific form to explain your need for the health care service called "medical necessity". 
  2. Your insurance reviews the request and may approve or deny it. 
  3. If your insurance asks for more information or denies your request, you and your doctor may need to send more information to have the request approved or submit a second request. 

Appeal your insurance company's decisions if you do not agree with them 

Your insurance company may deny coverage of a health care service. If this happens, you can appeal the decision–this is your right! An appeal is a request to your health insurance company to change a decision about your coverage.  

To find out how to appeal, call your insurance company or find instructions on their website. The steps may vary, but usually: 

  1. You mail a brief appeal letter and any supporting documents to your insurance company. 
  2. Your insurance company sends a letter with their decision. It will tell you how to ask for another review if the company did not change its decision. 

Get help with insurance, including help to apply 

Many doctor's offices have a social worker, case manager or care coordinator who can help you with insurance, including applying for health insurance. Ask your doctor if they can refer you to someone. A social worker can help you: 

  • Understand your insurance options 
  • Apply for health insurance 
  • Understand your insurance plan 
  • Know what to do if your insurance will not pay for something, such as programs that can help pay the cost or other ways to get genetic testing 
  • File any requests or appeals to your insurance 

If you need help paying for a health care service, a social worker may also know of programs that can help pay the cost.