The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
As pandemic public health measures wind down, it’s important to consider how to keep yourself safe in the workplace as a person who is immunocompromised. If you qualify as having a disability, federal and state laws protect you from job discrimination and give you the right to negotiate with your employer for reasonable accommodations to perform your job.
Although you may not have considered it before COVID-19, primary immunodeficiency or other immunocompromising conditions can qualify you as a person with a disability under the Americans with Disabilities Act (ADA) and its successor, the Americans with Disabilities Act Amendments Act (ADAAA).
The ADA defines someone as having a disability if they have a physical or mental impairment that substantially limits one or more major life activities, have a record of such an impairment, or are regarded as having an impairment. The ADAAA explicitly mentions major bodily functions, including the immune system, as examples of “one or more major life activities.” So, if your diagnosis or condition substantially limits the function of your immune system, legally, it is considered a disabilty and you are entitled to ADA and ADAAA protections.
In addition, ADAAA clarified that medications or treatments that lessen the effects of an impairment should not be considered when deciding if the impairment “substantially limits” a major life activity. In other words, an immunocompromising condition may still qualify as a disability even if it is well controlled with treatment. Impairments that are temporary, in remission, or come and go are also explicitly eligible under ADAAA.
ADA and ADAAA only apply to employers with more than 15 employees. However, some states have additional laws that apply to smaller employers.
Also, keep in mind that ADA makes job discrimination against a qualified person with a disability illegal. To be qualified for a given job, you must be able to perform the essential functions of the job with or without reasonable accommodations. For example, an essential function of a hospital floor nurse is interacting with patients in person. If you are immunocompromised to the point that you cannot work with patients in person, your impairment makes it impossible for you to perform an essential function of the job and you are not considered qualified to hold that position under ADA.
Finally, any accommodation you request must be reasonable and cannot cause your employer undue hardship. What is reasonable versus what causes undue hardship depends both on what you are requesting and the size and resources of your employer. An example may be requesting to change the layout of a building that already meets the minimum ADA accessibility requirements - unless the building has movable walls, this would likely cause any employer undue financial and logistical hardship.
Provided they don’t interfere with your essential job functions, here are some examples of accommodations that might be reasonable for someone who is immunocompromised.
The list above is certainly not exhaustive. Check out the Job Accommodation Network’s (JAN) SOAR tool for additional accommodation ideas.
In general, employers should have a defined process for requesting accommodations. Check with your Human Resources department for details on that process. In addition, JAN has a form letter you can use to craft your request.
In order to request an accommodation, you will need to disclose your diagnosis or condition to your employer. A letter from your healthcare provider, as well as the relevant chapter from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, 6th Edition, can help you explain your condition and how it affects or may affect your job. However, note that your medical information is confidential and disclosing it to Human Resources does not mean they can share it with others, internally or externally. Your supervisor and coworkers are only entitled to know information required to implement any accommodation, not information about your diagnosis or condition itself.
It’s best to approach requesting an accommodation as a negotiation rather than issuing demands. Your employer does not have to agree to any particular accommodation as long as they put forth reasonable alternatives. The U.S. Equal Employment Opportunity Commission (EEOC), which is responsible for enforcing ADA and ADAAA, calls this the “interactive process” and requires employers and employees to work in good faith under their enforcement guidelines for Title I of the ADA. Be prepared to discuss alternatives to the accommodations you have requested and whether those alternatives will work for you.
Sometimes, no matter how you approach requesting an accommodation, the process breaks down. In that case, JAN offers helpful advice on appealing your employer’s decision, including engaging local or state Fair Employment Practices Agencies (FEPAs) and ultimately, the EEOC if necessary.
Host a private screening of Compromised: Life Without Immunity to experience the resilience, hope, and determination of the PI community. And know that your hosted event can be two people or 100+!
Watch the filmThis page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.
Receive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
Combined Charity Campaign | CFC# 66309