Understanding Your Rights living with an ALS-Related Genetic Alteration

As an ALS family, it’s normal to experience fear. You may worry about what would happen if a family member received a positive test result for an ALS-related gene mutation. Additionally, you may have concerns about discriminations they could face for being gene positive. 

The only nationwide sectors of the United States’ economy that are legally prohibited from discriminating based on genetic information is your health insurance and place of employment (for employers with more than 15 employees). 

For health insurance, this means that you cannot lose, be denied, or be charged higher rates for health insurance due to having an ALS-related gene mutation. 

For employment, this means that if your employer has more than 15 paid staff members, it cannot terminate or otherwise discriminate against you solely because you have an ALS-related gene mutation. 

These protections are in place because of the Genetic Information Discrimination Act (GINA). For more information on GINA and the agency that enforces it, visit the Equal Employment Opportunity Commission (EEOC). 

Many states have laws that give you additional protections against discrimination in addition to what is given by GINA. For instance, Florida recently enacted a law that prohibits life insurers and others from discriminating based on genetic status (this includes having an ALS-related mutation.) To review what laws are in place for your state, visit the National Human Genome Research Institute’s Genome Statute and Legislation Database

The two federally-mandated policies listed above aren’t enough. We recognize the need to expand protections for our community through new legislation. For example, the ability to secure life insurance, long/short term care, and long/short term disability insurance are not adequately protected in the policies listed above. Currently, in most of the United States, life insurers may discriminate by denying a policy or charging higher rates for someone whom they know has an ALS-related mutation. The same is true for long-term disability and long-term care insurers. This is an injustice that must be corrected. 

If you are experiencing discrimination based on your gene status, here are a few resources that might help you navigate this tricky situation…

We're here to help with the challenges of ALS

Connect with an ALS Support Specialist today

Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

Back to Top