Insurance and Advocacy Health Advocacy:
You Can Make A Difference
What Is Advocacy?
As a person living with hemophilia, staying informed about current healthcare legislation can have a significant impact on the level of care and quality of life available to you.
For example, persons with hemophilia in the state of New Jersey have access to their choice of hemophilia therapies. This level of care is a direct result of local lobbying and the actions of the Hemophilia Association of New Jersey (HANJ) on behalf of the hemophilia community, with the goal of ensuring that hemophilia patients have choice, access to comprehensive care, and adequate reimbursement.
In every community, opportunities exist for people concerned about hemophilia to make a difference. On this page, you will learn about different ways you can be involved in advocacy efforts. There's also information about hemophilia organizations and resources available to help make your work successful.
Find More Help And Resources Here
- Does hemophilia affect your life? Get all the facts here.
- Find out all about hemophilia here.
- Patient resources that are there when you need them.
What Is Hemophilia Advocacy?
Advocacy means supporting a cause by pleading or arguing in its favor. Advocacy may be as simple as making sure you as an individual get the care you want and need – being an advocate for yourself.
For many people, however, advocacy involves a broader scope – being an advocate for the hemophilia community. Hemophilia advocacy may mean working with legislators, regulators, insurance companies, or healthcare organizations. Advocacy work may occur at the local, state or national level. Whatever the scope or level, there are several important steps for any type of hemophilia advocacy work.
Step 1: Be Informed
The first step in any type of advocacy work is learning. Gather as much information as possible about an issue. And don't forget that the world of hemophilia is always changing, so you'll need to keep learning. Being informed is a continuous process.
How do you start? On this website, you can find a great deal of information, as well as links to many reliable sources, on the web and in print. Your local or state hemophilia organization can also help with providing current research about a wide range of medical, political, and financial issues relating to hemophilia.
Step 2: Identify Hemophilia Resources
As you learn, you will also begin to identify resources that can help with your advocacy effort. If you are considering a legislative initiative, you will find that a successful legislative campaign requires strategic coordination.
Hemophilia chapters and organizations may be in the best position to coordinate these efforts by ensuring that consumers, healthcare professionals, and medical providers are all actively engaged in the process.
Washington Days, the National Hemophilia Foundation's (NHF's) annual legislative conference, offers many ways to learn about and be involved in the legislative process. This event includes meetings with legislators, educational updates and briefings, and advocacy training sessions.
Step 3: Get Started With Hemophilia Advocacy
The landscape for hemophilia – legislation, reimbursement, medical advances – is constantly evolving. With all the changes occurring, it is more important than ever to get involved in finding solutions and ensuring options for the hemophilia community.
To help you get started, here's a list of links to reliable resources. Your journey to an advocacy role can begin with just a click.
- For links to nonprofit and international hemophilia foundations, visit the Hemophilia Organizations section of ThereForYou.com.
- For more information on hemophilia legislation and ways to stay involved in furthering the interests of the hemophilia community, visit HANJ's website.
- For information and registration for Washington Days, visit the NHF Web site.
Note: These links are provided for your convenience. However, they lead to external websites not created, managed, or maintained by Baxter. Baxter is not responsible for, and does not necessarily endorse, the opinions or therapeutics represented on these external pages.
