The Health Insurance Portability and Accountability Act (HIPAA) of 1996, The Consolidated Omnibus Budget Reconciliation Act (COBRA), The Genetic Information Nondiscrimination Act (GINA) and The Patient Protection and Affordable Care Act (ACA) are laws that pertain to privacy and insurance aid related to your cancer diagnosis and treatment which may be relevant to you. Below are overviews of each with links to resources where you can find more information. And, if you have specific questions about how one of these laws may apply in your unique circumstances, we recommend contacting a legal expert.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA)

First, understand that all the HIPAA safeguards apply equally to anyone with a serious health condition — whether it’s cancer, heart disease, liver disease or a host of other ailments. Any type of health condition falls into the “protected health information” category under HIPAA. 

HIPAA

• Prohibits discrimination based on health status in certain circumstances.
• Protects medical privacy, including a cancer diagnosis and treatment, by limiting certain people from disclosing information.
• Sets limits on who can have access to a person’s health information in all forms.
• Prevents anyone from receiving a person’s health information without his or her consent and ensures that what is shared are only the relevant details.

HIPAA gives you rights over your health information and sets rules and limitations on who can look over your health information.

Among the safeguards in place, mandated by the law, that you can feel comfortable your employer is following:

• No disclosure of health information without your permission. Your human resources staff, for instance, can’t give anyone information until someone has obtained your OK.
• The health information must be limited. Only details that are absolutely necessary for the other party — whether the other party is an insurance company, a doctor or other — to know can be transmitted.
• Adoption of policies and procedures to safeguard health information. If your employer sponsors a self-funded plan, he must train the workforce on the new policies, have a privacy complaint procedure in place and take “reasonable precautions” to be sure your information is secure. You should expect that only a limited number of employees have access to the health information files. If a variety of people seem to be handling your health information, you might ask exactly who has authorization to manage it. The employers agree to establish adequate “fire walls” to protect the privacy of your health information.

Additionally - if you have chosen to disclose your diagnosis at work - there are a number of measures you can take as an employee to be sure you’re getting full benefit of the law:

• Less is more. When you are talking to your human resources representative or your boss, remember you aren’t talking to your healthcare team. They don’t need to know everything. Focus on answering questions as straightforwardly as possible; don’t ramble. If they want more information, let them ask.
• If you aren’t certain if you are telling too much, role-play first. You might rehearse with your physician or a friend familiar with the new law.
• Don't be surprised if you are asked permission to release information. If you go to HR and ask them to call your health plan about a claim that hasn’t been paid in a timely manner, you should expect to first sign a disclosure form granting permission to ask about the tardy payment. Always read such documents closely before signing to be sure you're comfortable doing so.
• Keep yourself updated. The U.S. Department of Health and Human Services Office for Civil Rights (www.hhs.gov/ocr) has consumer information sheets on the site about HIPAA as well as a valuable section on frequently asked questions.

The Consolidated Omnibus Budget Reconciliation Act (COBRA)

• Gives eligible employees the right to continue receiving their health insurance benefits for 18 months after leaving the company.
• Provides eligible family members of employees the right to confine receiving their health insurance benefits for 36 months after losing coverage.
• Allows patients to continue seeing their own doctors for continuous treatment, since they keep the same health plan.

Employees at companies with 20 or more workers are eligible to receive COBRA benefits if they sign up within 60 days of losing their healthcare coverage. An eligible employee can elect COBRA when he or she experiences a qualifying event, such leaving his or her job or reducing his or her hours. Former employees who take advantage of COBRA must pay the monthly health-insurance premium themselves. To read more about COBRA, visit www.dol.gov/dol/topic/health-plans/cobra.htm 

The Patient Protection and Affordable Care Act (ACA)

• Implements new regulations which prevents all health insurers from denying coverage to people for any reason, including health status, and from charging higher premiums based on health status and gender.
• Allows individuals who do not have access to affordable employer coverage will be able to purchase coverage through a Health Insurance Marketplace.
• Small businesses can purchase coverage for their employees through the Small Business Health Options Program (SHOP)

The Patient Protection and Affordable Care Act was signed into law by President Obama on March 23, 2010. You can learn more about the ACA and healthcare reform on the U.S. Department of Health and Human Services website

The Genetic Information Nondiscrimination Act (GINA) of 2008

• Prohibits health insurers or health plan administrators from requesting genetic information of an individual.
• Prohibits most employers from using genetic information for hiring, firing or promotion decisions and for any decisions regarding terms of employment.

For additional information on the provisions in GINA, go to www.hhs.gov/ohrp/regulations-and-policy/guidance/guidance-on-genetic-information-nondiscrimination-act/index.html.

Updated 2024