If you are a parent/caregiver of a child, under the age of 18, it is your responsibility to advocate for your child to receive these rights.
Medical information
- You have the right to be fully informed about your diagnosis, all treatment options, and your prognosis in terms that you can understand.
Choice of healthcare provider
- You have the right to choose medical personnel who can deliver quality healthcare to you. You have the right to request second opinions or consultations if you choose without consequence.
Involvement in healthcare decisions
- You have the right to participate fully in any decisions regarding your treatment and mutually plan care with your providers.
- You have the right to be informed of your treatment, including specifics regarding drugs and treatments.
- You have the right to engage in conversation with your healthcare provider regarding options for therapies and services, regardless of health insurance policies.
- You have the right to the site of care and mode of treatment delivery that suits your needs, understanding that your insurance may not cover every option.
- You have the right to treatment options that are indicated, safe, and effective for your specific form of PI, including but not limited to immunoglobulin (Ig) replacement therapy, hematopoietic stem cell or bone marrow transplantation, gene therapy, enzyme replacement therapy, and biologics.
- You have the right to refuse any drug, treatment, or procedure without retribution.
- You have the right to participate in or investigate clinical trials for your illness.
Fair treatment and non-discrimination
- You have the right to be respectfully treated and cared for by your healthcare providers, regardless of your age, race, gender, nationality, religion, or sexual identity.
- You have the right to be given the option of the Family and Medical Leave Act, based on the size of your employer, to address chronic absence from work due to a clinical condition.
- You have the right to request reasonable accommodations at work or at school.
- You have the right to request an insurance case manager be assigned to your medical case.
Privacy and protection
- You have specific legal privacy rights under HIPAA laws and regulations that may be found at U.S. Department of Health and Human Services: www.hhs.gov/hipaa.
Grievances
- You have the right to request a review of any complaint you have against your health plan, healthcare provider, hospital, or other healthcare personnel.
Created by the Immune Deficiency Foundation Nurse Advisory Committee in 2009. Revised in 2012, 2018, 2019, 2024.
