Tribal & Indigenous Cancer Care & Support

American Indian and Alaska Native people face some of the highest death rates in the country for certain cancers. They also face some of the longest distances to treatment. This page covers how the health systems available to Native people actually work, including the parts that surprise people. It also covers what helps when treatment means travel.

Care for American Indian and Alaska Native people usually comes through one of three routes:

1. Facilities run directly by the Indian Health Service.
2. Facilities run by tribes and tribal organizations under self-determination agreements.
3. Urban Indian health programs.

The urban part is the piece most often missed. IHS reports that around 70% of American Indians and Alaska Natives live in urban areas. It supports 41 urban Indian organizations operating at 59 sites.

These are non-profit organizations. IHS funds and contracts them under Title V of the Indian Health Care Improvement Act. They provide outreach and referral, ambulatory care, and mental health and substance use care. What each one offers varies. Programs set their own scope based on the unmet needs of the community they serve.

Eligibility rules and services differ between these three routes. Have you moved, from a reservation to a city, or between states? Do not assume your access moved with you. Ask.

Sometimes the care you need is not available at an IHS or tribal facility. It may then be paid for through Purchased/Referred Care, or PRC. Cancer treatment almost always falls into this category, so it is worth understanding.

IHS is explicit that PRC is not an entitlement program. A referral does not by itself mean the care will be paid for. To be paid, several conditions must all be met:

• You must meet the residency requirements for the PRC delivery area.
• You must meet notification requirements. There are deadlines for telling the PRC program about care you received, and they are short. Ask your local program exactly what they are and write them down.
• The care must meet the program's medical priority level, which depends on available funding.
• You must use alternate resources first. IHS is a payer of last resort. That means Medicare, Medicaid, VA benefits, private insurance or other assistance must be used before IHS will consider paying.

That last point catches people out. Enrolling in Medicaid or Marketplace coverage if you are eligible is not a betrayal of treaty-based care. It is often what lets PRC cover the rest.

If a claim is denied, there is an appeals process. Ask for the denial in writing, and ask how to appeal.

Radiation therapy can mean daily appointments for weeks. Chemotherapy runs on a fixed cycle. If the cancer center is four hours away, that is not an inconvenience. It is a common reason treatment gets abandoned partway through. Clinicians often do not realize it until it happens.

So say it out loud early. Ask whether any part of the regimen can be given closer to home. Ask whether an equivalent option involves fewer visits. Ask what lodging exists near the hospital. Many cancer centers have deals with nearby lodging, or funds for travel. Almost none advertise them.

Practical steps:

• Ask your IHS, tribal or urban program who handles PRC. Get that person's name and direct number.
• Tell PRC as soon as you receive outside care, including emergency care. Note the date and who you spoke to.
• Check whether you qualify for Medicaid, Medicare or Marketplace coverage, and apply if you do.
• Ask the cancer center social worker about travel funds, lodging and gas cards before treatment starts, not after.
• Ask whether follow-up visits can be done by telehealth from your local clinic.
• Ask whether any clinical trial is open to you, and whether it covers travel.
• Ask whether a patient advocate or community health representative can come with you to appointments.

It is worth knowing what screening your local program offers. It is also worth knowing what palliative care provides alongside treatment. That means symptom control, not giving up.

For many Native patients, healing includes traditional practices, ceremony, and the presence of family and community. Most hospitals will accommodate more than you would expect, if you ask specifically.

Ask whether a traditional healer can visit. Ask whether ceremony can be arranged in some form. Ask whether extra visitors can be present. Some cancer centers have Native patient navigators.

The funding limits described here are real, and they are not your fault. Knowing where the rules bite gives you a better chance of finishing a whole course of treatment rather than most of one. Our support page can help you find someone to talk to.

• CDC — Cancer and American Indian and Alaska Native People
• National Cancer Institute — Native American Initiatives, Surveillance Research Program
• National Cancer Institute — Cancer Disparities
• Indian Health Service — Purchased/Referred Care