Kidney patients' rights

In order to make important decisions about your health care as a kidney patient, it is critical to have the facts, such as your rights as a patient, information about different dialysis modalities, understanding how health insurance works and appealing coverage and care decisions made by your insurer. This section was designed to help you navigate these complicated issues and empower you to make informed decisions about your health care.

Understanding health insurance

Health insurance can be confusing. Click here to learn about the different types of health insurance, definitions for common terms and what you need to know about getting health insurance when you have kidney disease. 

Dialysis Patients' Bill of Rights

What are my rights as a dialysis patient?

• You have the right to make choices about your treatments. You have the right to understand – in simple terms and language you know — everything about your health, condition, and the treatments available. This includes learning about tests and treatment options, and what may happen if you are treated or not.

• You have the right to refuse care.

• You have the right to choose the dialysis modality that is right for you. These options can include home dialysis vs. in center dialysis as well as hemodialysis vs. peritoneal dialysis.

• You have the right to choose your healthcare/dialysis provider.

• You have the right to be treated with respect and not be discriminated against. You have the right to be treated with respect, regardless of your sex, race, disability, type of dialysis, income, etc. by all healthcare providers.

• You have the right to make complaints and express your concerns. You have the right to a fair, fast, and careful review of complaints you make. Complaints may be against your healthcare providers or health care facilities and their staff.

• You have the right to privacy of your health care information and your communications with your healthcare providers. You have the right to talk to your health care provider privately and have your health care information kept secret. You have the right to see and get a copy of your own medical records. You can also tell healthcare providers if you think your records are wrong.

• You have the right to receive emergency treatment. You have the right to get emergency health care when and where you need it.

• You have the right to choose your health care plan. You have the right to choose health care plans and healthcare providers that are best for you. You may also choose which health care plan best covers tests and treatments for a condition.

• You have the right to be informed in advance of the care being provided, of the charges incurred and what your financial responsibility is.

• You have the right to request a review/appeal of certain decisions about health care payment, coverage of services, or prescription drug coverage.

• You have the right and responsibility to know important health information about your health care plan, plan rules and coverage.

Medicare Part D Appeals

What is Medicare Part D?

Medicare Part D is the Medicare program that helps pay for outpatient prescription drugs. You are eligible for Medicare Part D if you are enrolled in Part A or B.

Under Medicare Part D, you have the right to ask your insurance to pay for a drug you think should be covered, provided, or continued. If your insurance decides against paying for a drug, you have the ability to request an appeal of their decision.

Before you appeal, your physician or pharmacist will look for an alternative prescription, such as a generic form of the drug or another name brand, that will be covered, provided, or continued by your insurance. The alternative drug will need to do the same treatment as the initially prescribed drug. If there is not an alternative that is covered by your insurance, the appeals process can begin.

What is the Medicare Part D appeals process?

Under Medicare Part D, there are 5 levels of appeals. These 5 levels are specific steps you can take if you are denied access to a drug. If you disagree with a decision made during any of these steps, you can take your appeal to the next level.

Step 1: Redetermination

If your health care provider states that you need a particular medication and your insurance company has denied coverage, the first step in the appeals process is to ask your Part D insurance company for a redetermination. In the redetermination, you will ask the insurance company to "redetermine the denial."

Your request should a written letter from you and it needs to include your name, address, Medicare number, the name of the drug you need access to, the reason you are appealing, and any medical records that show why you need this particular drug.

Insurance companies have three response timelines. In an emergency situation, the insurance company must respond in 72 hours. The standard time for a service, such as getting the drug, is seven days. The time to redetermine payment for a drug that you already have is 14 days. Some insurance companies will allow your appointee or your physician to appeal for you, and some insurance companies will take the information over the phone.

If your network pharmacy can't fill a prescription, the pharmacist will show you a notice that explains how to contact your Medicare drug plan so you can make your request. If the pharmacist doesn't show you this notice, ask to see it. Directions on how to take the first step in appealing should also be included in your enrollment information. If it is not, you can call your insurance company's customer service and they will tell you how to appeal.

Step 2: Reconsideration or Independent Review

If the insurance company does not cover the drug, you can take the next step, which is reconsideration by an Independent Review Entity (IRE). The IRE is a separate organization that has been contracted by Medicare to address the denials of services or drugs. When you get an unfavorable redetermination (denial), the paperwork should include instructions on how to ask for a reconsideration through the IRE. It should also include a form that you fill out and mail in. If your denial did not include this information, you can call customer service and they will send it to you. Once you have requested reconsideration by the IRE, your insurance plan will send all the information to the IRE and the IRE will make a decision.

Step 3: Hearing by Administration Law Judge

If the IRE decides that the insurance company does not have to cover the drug, the next step in the appeal process is to request a decision by the Office of Medicare Hearings and Appeals (OMHA). You can make the request by following the directions included in the denial by the IRE. The directions should be included under a section called, "Medicare Reconsideration Notice." You can request a decision by filling out a request for a Medicare Hearing by an Administrative Law Judge. You can also request a hearing by requesting one in writing. In your letter, you should include your name, address, Medicare number, the appeal number by the IRE, an explanation of why you are requesting the hearing, and any additional information that will help your case. Most hearings are done using video-teleconferencing.

Step 4: Hearing by Medicare Appeals Council

If the Administrative Law Judge does not find in your favor, you can move to the fourth step in the appeals process and ask for a review of the decision by the Medicare Appeals Council. To take this next step, you can submit a written request that includes the same information you used to request a decision by OMHA with the date of the Administrative Law Judge's decision, why you disagree with it, and your Medicare Summary Notice (which you receive quarterly). You can also request a decision by using the "Medicare Appeals Council by sending in the Request for Review of Administrative Law Judge (ALJ) Medicare Decision/Dismissal" form.

Step 5: Hearing in Federal District Court

If the Medicare Appeals Council also denies you the pharmaceutical drug that you need, you can request a federal district court judicial review. The direction on how to request the judicial review are included in your denial paper work from the Medicare Appeals Council. In order to receive a judicial review, the costs have to be a minimum of $1,670.

Information on different treatment modalities for dialysis

Kidney failure, or end-stage renal disease (ESRD), requires you to undergo dialysis or a kidney transplant because your kidneys no longer function well enough for you to survive without treatment. Choosing a treatment option, whether it is in-center hemodialysis, home hemodialysis, or peritoneal dialysis, or a kidney transplant, or medical management, is a personal decision that should be made in consultation with medical professionals and those closest to you. It can depend on several factors, including but not limited to: your medical condition and comorbidities; functional limitations you may have; your desire for greater flexibility and independence to work and travel; your home environment; and access to caretaker support.

More information on kidney failure treatment options can be found on the American Kidney Fund's website, with specific resources on hemodialysis, peritoneal dialysis, and kidney transplants.

Guidance on enrolling in SSI and SSDI

Kidney disease is a debilitating condition that can affect a person's ability to work and earn an income. The Social Security Administration (SSA) administers two disability benefit programs if you cannot work due to a medical condition: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The following information provides information on the disability programs, eligibility for benefits due to kidney disease, and how to apply for benefits. Learn more about Social Security Disability Benefits.