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For people with primary immunodeficiency (PI), employment is about more than just making money and job satisfaction. You need a job that will allow you to perform at a high standard with your disorder and will offer good health insurance benefits. There are many people with PI who have amazing jobs and you can be one of them.

Job Selection

Let’s face the facts, depending upon your type of PI, there might be some jobs that will not be appropriate for you. However, there are many ways to work in a field you are passionate about with some adjustments. For example, there are many people with PI that work in the medical field without being exposed to infectious diseases. Fortunately, the job market has thousands of opportunities that could be a great fit for you. Whether or not you would be a good candidate for employment will be based on a few basic principles:

  • You have skills that employers will know how to apply to a variety of workplace settings.
  • You have a positive attitude despite having a chronic illness.
  • You display initiative and self-motivation.
  • You show that you are determined to have a successful career even though you have PI.

The best job plays to your strengths. Remember that you aren’t the only one with limitations—everyone has limitations in one way or another.

Note that during a job search and application period, you do not have to disclose that you have PI unless it affects your ability to complete essential job functions. After you are hired, you do not have to disclose this information unless you are requesting an accommodation.

Benefits

It is critical to consider the type of health insurance benefits offered by an employer. Insurance plans can differ greatly from one to the next even within the same company. If you are applying or interviewing for a potential job, it is entirely appropriate to ask about health insurance benefits. Health benefits are considered compensation and should be investigated in the same way a salary is investigated. Note, the potential employer cannot ask about any disability or medical concerns in response to you asking for health benefits information.

As of January 1, 2014, the Affordable Care Act (ACA) ensures that all Americans, regardless of a pre-existing condition, are eligible to receive health insurance. Once you have health insurance, it is against the law for you to be dropped from the plan due to the expense of your treatment.

In addition to health insurance benefits offered by the employer, you should also investigate the other benefits offered as well. Employers often provide short-term and long-term disability insurance coverage or wellness plans.

Short-Term Disability Insurance

Short-term disability (STD) insurance covers leave from work for a temporary disability, such as pregnancy, accidental injuries, and illnesses. STD insurance replaces a portion of your income, which is a huge benefit. The percentage of income paid depends on the insurance plan. The replacement income comes from the insurance company, not the employer. California, Hawaii, New Jersey, New York, and Rhode Island have state short-term disability programs.

Note, many STD insurance plans do not cover preexisting conditions, such as PI, or do not cover such conditions until the expiration of a certain period of time, such as 12 months. Also, some may cover preexisting conditions but have certain specific conditions that are excluded. Be sure to investigate these rules.

Long-Term Disability Insurance

Long-term disability (LTD) insurance picks up where STD insurance leaves off. Once the STD benefits expire (generally after three to six months), LTD insurance pays a percentage of your salary, usually 50-60%, depending on the policy. The benefits last until you can go back to work or for the number of years stated in the policy.

It’s important to note that, like STD insurance, many LTD insurance plans do not cover preexisting conditions, such as PI, or do not cover such conditions until the expiration of a certain period of time, such as 12 months. Also, some may cover preexisting conditions but have certain specific conditions that are excluded. Be sure to investigate these rules.

Unpaid Medical Leave

Even if you are excluded from STD insurance, you may be entitled to medical leave under the Family and Medical Leave Act (FMLA; see details below). This Federal law provides protections when you miss work because of PI or you need to care for a child/spouse with a PI. You may also be entitled to medical leave under the Americans with Disabilities Act (ADA). State workers’ compensation laws and/or medical leave laws may have additional provisions that apply as well.

Cobra Insurance

The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers who lose their health benefits the right to choose to continue group health benefits provided by their plan under certain circumstances.

In the event that you lose your health coverage for a qualifying event, your employer will send you an election notice within 14 days after your last day on the health insurance plan. You will then have 60 days to decide whether to elect COBRA continuation coverage. You will then have 45 days after electing coverage to pay the initial premium. Expect to pay the total premium (both your employer’s and your contribution to the premium) plus 2% for administration expenses. Also, another important note is that COBRA premiums are not tax deductible, like they are when they are deducted from payroll.

COBRA defines certain qualifying events that would cause an individual to lose health coverage. The type of qualifying event will determine who the qualified beneficiaries are and the amount of time that a plan must offer the health coverage to them under COBRA. A plan, at its discretion, may provide longer periods of continuation coverage.

Legal Protections

Americans with Disabilities Act (ADA) and Americans with Disabilities Act Amendments Act (ADAAA)

Title I of the Americans with Disabilities Act (ADA) states that employers with more than 15 employees may not discriminate against a qualified individual on the basis of disability in regard to a job (application hiring, promotion, firing, compensation, job training etc.) and must provide reasonable accommodations to individuals with disabilities. According to the ADA, a disability is:

  • A physical or mental impairment that substantially limits one or more major life activities of an individual.
  • A record of such an impairment.
  • Being regarded as having such impairment.

This means that you cannot be eliminated from consideration for employment or from your current job because of your PI if you have the skills, experience, education, or meet other requirements for the job, and you can perform the essential functions of the position with or without reasonable accommodation.

The ADA requires employers to offer a reasonable accommodation to employees with a disability. A reasonable accommodation is any modification or adjustment to a job, practice, policy, or work environment that allows an individual with a disability to participate equally in an employment opportunity without creating an undue burden for the employer. Reasonable accommodations may include:

  • Modifying a work schedule.
  • Acquiring or modifying equipment. 
  • Time off for medical appointments 
  • Telecommuting arrangements.

For more information about the ADA, visit www.ada.gov. State legislation related to ADA is tracked by the National Conference of State Legislatures.

Family and Medical Leave Act

The Family and Medical Leave Act (FMLA) allows qualified employees working for a company with more than 50 employees to take unpaid, job-protected leave for specified family and medical reasons, with the continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.

Qualifying reasons for FMLA leave include but are not limited to:

  • The birth of a child and to care for the newborn child within one year of birth.
  • The placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement.
  • To care for the employee’s spouse, child, or parent who has a serious health condition.
  • A serious health condition that makes the employee unable to perform the essential functions of his or her job.

Eligible employees may take up to 12 weeks of unpaid leave in a 12-month period under FMLA. The leave does not have to be consecutive and can be taken intermittently. For example, intermittent FMLA may be used for periodic medical treatments and related recovery.

Note that many states have enacted laws that expand on federal FMLA. The National Conference of State Legislatures (NCSL) tracks these state-level laws.

U.S. Equal Employment Opportunity Commission

Another important government agency that is a valuable resource is the U.S. Equal Employment Opportunity Commission (EEOC). The EEOC is responsible for enforcing federal laws that make it illegal to discriminate against a job applicant or an employee because of the person’s race, color, religion, sex (including pregnancy), national origin, age (40 or older), disability, or genetic information. It is also illegal to discriminate against a person because the person complained about discrimination, filed a charge of discrimination, or participated in an employment discrimination investigation or lawsuit. 

Excerpted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases SIXTH EDITION. Copyright © 2019 by Immune Deficiency Foundation, USA. This page contains general legal information that cannot be applied to any individual case. Therefore, this page should not be used as a substitute for professional legal advice.