Understanding primary immunodeficiency (PI)
Understanding PI
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.
Learn more about PI
Living with PI
Living with PI
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.
Learn more about living with PI
Get involved
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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.
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Advancing research and clinical care
Advancing research and clinical care
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.
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Managing PI in the workplace

Finding and maintaining employment can be a complex process that involves more than just job satisfaction and making money. It also includes finding a job that accommodates your condition and provides good health insurance benefits.

Here we'll explore job selection and benefits, including health insurance, short-term disability insurance, long-term disability insurance, unpaid medical leave, and COBRA insurance.

Job selection

Living with a chronic illness can present challenges when searching for a job, but there are many ways to work in a field you are passionate about.

Here are some tips for finding the right job for you:

Focus on your skills and strengths, and look for job opportunities that allow you to utilize them.
Keep a positive attitude and display initiative and self-motivation during the job search process.
Remember that everyone has limitations, and don't let your chronic illness define you or limit your career aspirations.
You don't have to disclose your chronic illness during the job search and application process unless it affects your ability to complete essential job functions.
After you are hired, you can request accommodations if needed, but you are not required to disclose your chronic illness unless you are requesting an accommodation.
By following these tips, you can increase your chances of finding a job that is a good fit for your skills and abilities, while also accommodating your chronic illness.

Benefits

When considering a potential job, it's important to ask about the health insurance benefits offered by the employer. Here are some things to keep in mind when it comes to benefits and health insurance:

Health benefits are considered compensation and should be investigated in the same way as salary.
Employers cannot ask about any disability or medical concerns in response to you asking for health benefits information.
The Affordable Care Act (ACA) ensures that all Americans are eligible to receive health insurance regardless of pre-existing conditions.
Once you have health insurance, you cannot be dropped from the plan due to the expense of your treatment.
Employers often provide short-term and long-term disability insurance coverage or wellness plans, in addition to health insurance benefits.

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, with the percentage paid depending 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.
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.
Some plans 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 STD benefits expire (generally after three to six months), LTD insurance pays a percentage of your salary, usually 50-60%, depending on the policy.
Benefits last until you can go back to work or for the number of years stated in the policy.
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.
Some plans 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).

FMLA provides protections when you miss work because of PI or need to care for a child/spouse with 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

COBRA gives workers who lose their health benefits the right to choose to continue group health benefits provided by their plan under certain circumstances.

If 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 and 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.
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, with the type of qualifying event determining who the qualified beneficiaries are and the amount of time that a plan must offer the health coverage to them under COBRA.

Legal protections

There are powerful and important legal protections for workers with PI that employers must comply with under certain circumstances.

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

Employers with more than 15 employees cannot discriminate against qualified individuals with disabilities in job-related aspects such as application, hiring, promotion, firing, compensation, job training, etc.

A disability under the ADA includes a physical or mental impairment that substantially limits one or more major life activities, a record of such impairment, or being regarded as having such impairment.
Reasonable accommodations are adjustments to job, practice, policy, or work environment that allow individuals with disabilities to participate equally in employment opportunities without creating an undue burden for the employer.
Reasonable accommodations may include modifying work schedule, acquiring or modifying equipment, time off for medical appointments, telecommuting arrangements.

For more information about 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 eligible employees in companies with more than 50 employees to take unpaid, job-protected leave for specified family and medical reasons.

Qualifying reasons include the birth of a child, adoption or foster care placement, caring for a family member with a serious health condition, or a serious health condition that makes the employee unable to perform job's essential functions.
Eligible employees may take up to 12 weeks of unpaid leave in a 12-month period under FMLA, which can be taken intermittently.

Many states have laws that expand on federal FMLA, and the National Conference of State Legislatures (NCSL) tracks these state-level laws.

U.S. Equal Employment Opportunity Commission

The U.S. Equal Employment Opportunity Commission (EEOC) enforces federal laws that prohibit job discrimination against individuals based on:

Race
Color
Religion
Sex (including pregnancy)
National origin
Age (40 or older)
Disability
Genetic information

Discriminating against individuals who complained about discrimination, filed a charge of discrimination, or participated in an employment discrimination investigation or lawsuit is also illegal.

This 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.

Immune Deficiency Foundation
7550 Teague Road, Suite 220
Hanover, Maryland 21076

P: 410-321-6647

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