Political Advocacy, Patient Experience, and Lupus

The role of the patient is shifting both inside and outside of the clinic. Engagement and political advocacy are helping shape the future of people living with lupus.

In the simplest form, an advocate is someone who supports or recommends a particular cause, policy, or treatment. They can be an individual person or an organization. Patient advocates often focus on a specific disorder, or a group of disorders.

Advocacy of this type can occur at two different levels:

• Advocating for the needs of a single patient
  • Examples can include patient care navigators
• Advocating for the needs of all people
  • Examples include organizations and foundations including the Lupus Foundation of America

An advocate can be employed by a hospital, hired by an agency, provided by an organization, a member of the family, and also patients themselves. The ‘patient voice’ is a term used by people in the healthcare system emphasize the importance of the patient perspective on experiences and challenges.

The rise of social media and the internet has changed the methods for spreading awareness.  You can write blogs, spread awareness in their local community, sponsor events, and more. These events can help bring in money to support individuals medical bills, contribute to research focused on treatments & cures, and provide support services.

In contrast, political advocates work to make legislative and regulatory changes that can lead to more research that make healthcare more accessible for people with chronic illnesses.

What is political advocacy?

There are many hurdles in place for improving the healthcare system in the United States. A multitude of for-profit and non-profit companies work together inside a regulatory framework to manage the distribution and payment of care. Even small changes can have major impacts and the health system can be slow to adopt to changes and technologies that aren’t extensively validated by research.

Political advocates work to identify and support changes to benefit the entire system. There is not just one goal of political advocacy but many. Some examples of advocacy efforts in the past from major organizations include:

• increasing federal funding for research
• creating new billing codes to support alternative payment methods
• incentivizing hospital systems to use electronic records
• imposing penalties for improperly shared health data
• establishing consumer protections for insurance coverage
• allowing access to unapproved medications in certain instances

What does political advocacy look like?

• Town hall discussions
• Letter writing campaigns
• Phone calls to congresspeople
• Walks / Runs
• Protests
• Get creative!

Political advocates can also work at the state and county levels, making sure that the law and the lawmakers keep the interests of people with lupus in mind.

How Can I Advocate for Lupus

Anyone can become an advocate and the world needs to hear about your experiences. Whatever your background may be, whatever your spoons might be, you have valuable and important skills to bring to the table.

Here are a few tips on how to get started as an advocate:

1. Tell your story
   • Your lived experience with lupus is important. It helps people understand the illness better, and makes people with lupus feel supported. If you write a blog, share your story on your blog. If you are being interviewed, slip your story in there. You will be surprised at the good it will do.
   • Also, if you’re interested in contributing to LupusCorner, send us an email at hello@lupuscorner.com ?
2. Stay informed
   • New research is constantly being released. Check out PubMed and sites like LupusCorner. You can get an overview of the disease here, a rundown on lupus symptoms here, the facts on diagnosis and testing here, and some basic self-care tips here. LupusCorner is full of well-researched lupus facts and lupus resources, so it’s a good place to start. Also, check out the basic page on lupus by the Lupus Foundation of America.
3. Spread facts
   • It is easier than ever to reach an audience. Be sure to double-check the information that you share to make sure that you are spreading accurate statistics and figures.
4. Join an Organization
   • For advocacy – and especially for political advocacy – there is power in numbers. Joining a group gives you resources, guidance, and access to research. Organizations often set up events that help drum up support and spread awareness. Plus, you’ll be involved with other people advocating for lupus, all with the common goal of good health. That is always worth having.

When advocating for lupus, always remember to take care of yourself. Advocacy is great for everyone, but don’t let it set you back and cause symptom flares. You are a priority, and your organization will understand if you need to back away for a while. Often, you’ll find other people familiar with the challenges of lupus who will be happy to support you!

If you are looking to get started with an advocacy group, Chronic Illness Advocacy and Awareness Group (CIAAG,) National Association of Chronic Disease Directors (NACDD,) and The Alliance of Professional Health Advocates (APHA) are good places to go. The Lupus Foundation of America is also a valuable resource for advocacy, including an annual conference that can help with networking and advocacy.

Lupus Advocacy Summit

The Lupus Advocacy Summit is a group of lupus political advocates that meet in  Washington D.C. every year. There, they discuss the latest in lupus and lupus advocacy news and bring their issues directly to the congresspeople. This year, however, the Lupus Advocacy Summit went digital. Over 2,700 advocates and experts attended the fully-virtual summit, and connected with the lupus community all over the world.