If you think your rights have been violated

It is important to understand the details and fine print of various laws and protections before filing a complaint. We encourage you to review the information we have provided on specific laws and how they apply to individuals and families affected by hereditary cancer. In addition, the Insurance & Paying for Care section of our website has in-depth information about insurance coverage and how to file an appeal if you are denied coverage or believe your were overcharged for your health services.

The following are resources for people who are concerned that their legal rights have been violated under these U.S. laws:

Patient Protection Affordable Care Act (ACA)

The ACA is a comprehensive health care law that addresses health insurance coverage, health care costs, and preventive care and more. The law applies to most group and individual health plans but Medicare, Medicaid, grandfathered, short-term and catastrophic health plans are bound by all of the ACA requirements. For more information, visit the Affordable Care Act section of our website or go to healthcare.gov.

If you believe that your legal rights under the ACA have been violated, you should contact the health insurer first to understand its coverage decision. If the issue cannot be resolved directly with the insurer, the next step is to contact:

Genetic Information Nondiscrimination Act (GINA)

GINA is a federal law that prohibits genetic discrimination by health insurance plans and employers. Note that this law does not apply to employers with less than 15 employees; life, disability or long-term care insurers; members of the U.S. military, veterans obtaining health care through the VA, individuals using the Indian Health Service or federal employees enrolled in the Federal Employees Health Benefits (FEHB) program. Some states provide protections beyond the federal law. See the GINA section of our website for more information.

Health Insurance Complaints

  • Contact your state insurance commissioner’s office if you believe that you have experienced genetic discrimination by a health insurance company. Most states also regulate life, long-term care and disability insurer use of genetic information and accept complaints against these companies as well.

Employer/Workplace Complaints

  • Victims of genetic discrimination at work should contact the Equal Employment Opportunity Commission (EEOC). Complaints may be filed online, by mail or in person at an EEOC field office. Note that there are time limits for filing charges. Private sector employees may have as little as 180 days from the date of the alleged discriminatory act to initiate a claim. Federal employees must contact an EEO counselor at their agency within 45 days of the act of alleged discrimination. For more information, visit the EEOC employment discrimination webpage or call (800) 669-4000.
     

Health Insurance Portability & Accountability Act (HIPAA)

HIPAA provides privacy standards to protect medical records and other health information. HIPAA gives you rights over your health information, including the ability to get a copy of your medical records or other information. If you believe that your health information privacy rights have been violated, you may file a complaint with the:

  • U.S. Department of Health & Human Services Office for Civil Rights (OCR). OCR has the authority to investigate complaints against HIPAA-covered parties including health plans, health care clearinghouses, health care providers and their business associates.
     

Women's Health and Cancer Rights Act (WHCRA)

The WHCRA is a federal law that provides certain rights and protections to patients after a mastectomy. Some self-funded, short-term, government health plans and plans sponsored by religious organizations are exempt from the WHCRA. Medicare and Medicaid are also exempt from the law's requirements. Visit our sections on WHRCA and Insurance & Paying for Care to learn more.

Employer-Sponsored Group Health Plans

For those with an employer-sponsored group health plan, the WHCRA is jointly administered by the U.S. Departments of Labor and Health and Human Services. For questions or concerns, contact the:

  • Department of Labor's Employee Benefits Security Administration (EBSA) toll-free at (866) 444-3272 or email: askebsa.dol.gov, and/or
  • Department of Health and Human Services' Women's Health & Cancer Rights Act Hotline at (410) 786-1565 or email: phig@cms.hhs.gov.

Individual Health Plans

For people with individual health coverage, WHRCA generally falls under the jurisdiction of the state insurance department.