Helping Patients With Kidney Disease Navigate Insurance Coverage

Even when they have access to quality care, patients often face challenges paying for that care. Navigating the American insurance landscape was one of many important topics covered during the NephCure 2025 Patient Summit and Youth Summit in New York City.

During a presentation titled “Navigating Insurance,” Montrez Lucas, LMSW, a licensed social worker with NephCure, encouraged patients and their families to (1) make informed decisions during insurance selection, (2) find out costs in advance of any treatments or procedures, (3) use the skills of case managers and patient navigators, (4) appeal when necessary, and (5) seek financial assistance from the pharmaceutical industry.

Insurance Selection Is a Crucial Decision

One of the most important times a patient can ensure that coverage will meet their needs is when they are selecting a policy or choosing among plans during open enrollment, Lucas said.

“Speak with the insurance provider regarding your most expensive medications and their coverage,” he said. He also advised patients to inquire about possible procedures and other medications that may become necessary during the long-term coverage period. It may be helpful to study the disease trajectory of other patients with a similar diagnosis, he added.

Understanding the Costs

When a patient knows in advance that they need a certain medication or procedure, they should be proactive about understanding coverage and out-of-pocket costs.

“You can discuss the anticipated costs of a procedure with an insurance RN care manager or whichever party is assigned authorizations,” Lucas said. “Some insurance providers may require preauthorization; however, knowing the percentage that will be covered should not require preauthorizations being submitted.”

Using Case Managers and Patient Navigators

Clinicians can help patients navigate insurance by reminding patients of the help available through case managers and patient navigators.

These professionals are “a built-in liaison between patients and the insurance company,” Lucas said. “They can directly and efficiently handle your authorizations, appeals, denials, updates, etc. They often have intel regarding what documents are outstanding for an appeal, where the process is, and can assist in filing a patient/patient-caregiver lead appeal.”

Case managers and patient navigators also can provide referrals to primary care physicians, nephrology specialists, and behavioral health professionals and can also identify those who are accepting new patients.

Appeal, Appeal, Appeal

When coverage is denied, Lucas encourages clinicians and patients to “appeal, appeal, appeal.”

Lucas emphasized that appeals are often more impactful and successful when they use unbiased, empirical evidence that illustrates the efficacy of the denied medication or procedure.

In your appeal, use wording such as “life-sustaining” or “we’ve attempted other usually approved options such as…,” Lucas suggested. Also include evidence that showcases how the denied medication or procedure has been effective in the past with similar patients with the same diagnosis.

In cases when an appeal is denied, patients and clinicians may pursue an external review. This requires a written request for an external review within 4 months after the date of notice or final determination from the insurer that the claim was denied. All parties are required by law to accept the results of an external review.

Financial Assistance

Finally, Lucas encouraged patients and clinicians to seek financial assistance. Many pharmaceutical companies have programs to help patients with and without insurance. In addition, organizations, such as L.C. Renal Alliance and the National Organization for Rare Diseases, have programs that cover medication premiums for patients who have rare kidney disease and financial need.

About the Event

The NephCure Patient Summit is designed for individuals affected by rare kidney diseases, including patients, caregivers, families, advocates, and healthcare partners. To learn more about NephCure or to participate in future NephCure events, visit nephcure.org.