Patient Rights

Understanding your rights as a patient gives you the ability to make informed decisions, actively participate in your healthcare, and ensure you receive the best care possible. In the United States, there are significant laws at both the federal and state levels designed to protect patients. Additionally, some healthcare institutions and condition-specific organizations have a “Patient Bill of Rights”. These laws and practices not only facilitate treatment for your eosinophilic condition but also safeguard your privacy, protect against discrimination, and empower you to make decisions aligned with your preferences and beliefs.

Overview of Applicable Key Laws in the United States

Numerous federal laws establish patient rights in the United States.  Here are just several laws you should know about when navigating care for your eosinophilic condition:

Health Insurance Portability and Accountability Act (HIPAA):

HIPAA was enacted in 1996 and aims to safeguard patients’ medical information and privacy.  It sets standards for the confidential handling of your health information by healthcare providers, insurance companies, and other entities.

Americans with Disabilities Act (ADA):

The ADA was enacted in 1990 and prohibits discrimination against individuals with disabilities in various settings, including healthcare facilities. It requires healthcare providers to make reasonable accommodations to ensure you have equal access to medical services and facilities if you have a disability. The ADA also extends to other settings such as your employer, schools, public transit, and state and local government activities.

The Affordable Care Act (ACA):

The ACA was enacted in 2010 and aims to increase access to healthcare and reduce the number of uninsured individuals in the county.  The ACA established Health Insurance Marketplaces (such as Healthcare.gov) where individuals and families can purchase private a variety of health insurance plans intending to suitable options for various needs and budgets.  Additionally, the ACA expands Medicaid coverage, protects patients with pre-existing conditions, and extends health insurance coverage to young adults by allowing them to stay on their parents’ plan until age 26.

Food, Drug, and Cosmetic Act:

The Food, Drug, and Cosmetic Act, enacted in 1938 and since amended, provides regulatory oversight over food, drugs, medical devices, and cosmetics.  It ensures that the medications and medical devices your doctors prescribe are safe and effective before they are approved to be used for your care.

The No Surprises Act:

The No Surprises Act, enacted in 2022, established protections against surprise medical bills that arise when insured consumers inadvertently receive care from out-of-network doctors or facilities they did not choose.

21st Century Cures Act

In 2016, the U.S. Congress enacted the 21st Century Cures Act (also known as the Cures Act) to help accelerate the discovery, development, and delivery of new treatments and cures by enhancing medical innovation. This legislation also made it easier for patients to freely access their health records, and as of April 2021, hospitals and doctors may be fined for “blocking” patients from their health records.

Patient Charter for Eosinophil-Associated Disease

People with eosinophilic-associated disease (EAD) deserve streamlined and evidence-based care in partnership with trained and knowledgeable medical professionals. To this end, an international working group of physicians and patient advocates convened in 2022 to develop a patient charter for eosinophil-associated disease.  The Charter outlines four principles designed to improve the quality of care you should receive as a patient with an eosinophilic disease, as well as guidance on how patient and caregiver outcomes can be improved.  These principles include:

1. People with EADs, their caregivers, health care professionals (HCPs) and the public must have greater awareness of, and education about, EADs
2. People with EADs must receive a timely, accurate diagnosis
3. All people with EADs must have access to an appropriate, multi-disciplinary team, when necessary
4. People with EADs must have access to evidence-based care plans

When medical professionals follow this Charter, patients like you should have access to timely diagnosis and quality medical treatment.

Additional Resources:

• Summary of Patient Charter
• Full Publication of Patient Charter