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The provisions Health Insurance Portability and Accountability Act (HIPAA) of 1996 are in place, and other changes are being instituted by The Consolidated Omnibus Budget Reconciliation Act (COBRA), The Genetic Information Nondiscrimination Act (GINA), and The Patient Protection and Affordable Care Act (ACA) what can you expect in terms of privacy and insurance aid related to your cancer diagnosis and treatment?

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. 


  • 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 work force 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.

In addition, 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 health care 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.
  • Think through some of the procedures you are asked to do and whether your cancer treatment or diagnosis will affect your action. Suppose it is a workplace that does regular drug screening. You should ask your HR professional (as well as your physician) if cancer medications can affect the test results.
  • Expect to be 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 for them to ask about the tardy payment, for instance.
  • 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.
  • Keep yourself updated. The U.S. Department of Health and Human Services Office for Civil Rights ( 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 health-care 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 

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.
  • requires most individuals to have health insurance or pay a penalty
  • 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. Some of its provisions have already taken effect, additional changes will be added every year until 2020. You can get more timing details from the Kaiser Family Foundation’s timeline and an further explanation of the changes at  You can also find out much more about how the new provisions will affect both employers and employees at the Department of Labor’s site dedicated to the Affordable Care Act at

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 complete details about the provisions in GINA, go to