What Do Asthma Patient Advocacy Groups Do?

What is the role of a patient advocate? 

Some patient advocates will work with healthcare teams to help coordinate care.

A hospital may match you with a patient advocate, or you can look for one from a private organization or community group. Often, advocates provided privately can focus on specific services or problems, such as navigating bills or symptoms.

Whichever option you choose, your advocate should be able to:

• identify challenges in your care plan and look for solutions
• identify questions to ask your care team
• help find financial support

When working with an advocate, you will need to let your healthcare team and family know the role the advocate is playing in your care.

You can search for private advocates through the National Association of Healthcare Advocacy or the Alliance of Professional Health Advocates.

What does patient advocacy include? 

Patient advocacy can take different forms. Though the main goal is to help others navigate the healthcare world, one patient advocate’s contributions may differ from another’s.

When selecting or looking for a personal advocate, you should think about what you’d like to get out of their help. You don’t need to know exactly what you may need from them, but understanding some of their potential services can help you decide.

Some services advocates might provide include:

• Finding financial assistance. Some advocates can help find and apply to financial aids and grants to help fund your care.
• Navigate billing and insurance. Along with finding financial aid, an advocate can help communicate between insurance companies and billing departments. For people with asthma, they may be able to help figure out what medications and devices your insurance will cover, if you have insurance.
• Help identify questions. If your symptoms are getting worse or you go to the hospital, an advocate can help figure out questions to ask your doctor about your health and care going forward.
• Aid communication between your healthcare professionals. In some cases, an advocate can help communicate information from your allergist to your primary care doctor and other members of your treatment team.
• Help find answers to questions. You may feel lost or unsure of what comes next or how to approach an issue in your treatment. Your advocate can help you make sense of things and figure out a way forward.

How do you advocate for asthma?

You don’t need to formally join an organization or donate hours of your time each month to get involved in asthma advocacy. There are several ways to advocate that don’t require large time commitments.

According to the Allergy & Asthma Network, some ways you can get involved include:

• Share your story about your treatment journey and issues you have experienced.
• Take an advocacy survey.
• Get advocacy training.
• Sign up to be an advocate within their network.
• Contact your representatives in Congress to get your voice heard.

The Asthma and Allergy Foundation of America suggests that you get involved in these ways:

• Donate money to their organization to support research and help those in need.
• Fundraise for the organization.
• Join a community, in person or online, to help others living with asthma deal with the stressors related to the condition.
• Take action by providing educational material to schools and parents, sharing your story, participating in events, or sharing information on social media.

What do patient advocacy groups do?

Patient advocacy groups or organizations provide support services and education for people with health conditions and their caregivers.

Before joining or using a specific group, educate yourself on the group’s goals, practices, and any potential conflicts of interest.

Patient advocacy groups often provide the following services:

• raising public awareness of a disease or medical condition
• focusing on one or more medical conditions
• providing a clear mission and take steps to help people living with certain health conditions
• providing services for people affected by medical conditions

Asthma patient advocacy groups

Asthma patient advocates and advocacy groups vary in their exact missions, but they are generally concerned with advancing the cause for research, patient rights, and air quality improvement.

For example, the Asthma and Allergy Foundation of America’s guiding principles include:

• acquiring funding for basic, clinical, and preventive research
• promoting screenings and lifestyle interventions for people with asthma
• advocating for affordable and quality healthcare services for people living with asthma or allergies

Some other asthma advocacy groups and initiatives include:

• Allergy & Asthma Network, an organization that works with the federal and state governments to influence policies that will help people with asthma and other allergy conditions
• Little Airways, Big Voices, a group that works to uplift the voices of families and patients whose lives have been touched by asthma in childhood, so that researchers will focus on making improvements for children
• American Lung Association, an organization that focuses on a wide variety of lung health concerns and provides many resources for people with asthma, in addition to working on improving air quality and quality of life for people with lung conditions

The takeaway

Asthma advocacy groups and patient advocates help educate others about asthma, provide support to people with asthma, and fundraise for research.

A person can get involved in asthma advocacy by donating money or time, joining groups, getting training, sharing their story, and more.