This two day virtual summit brought patients, caregivers, clinicians, researchers and entrepreneurs from many industries, disease communities and regions of the world together to build connections,share information and get inspired! We are excited to bring you the highlights from the perspective of one of our volunteers, Brittany Murray, a patient living with Psoriatic Arthritis and creator of ChronicDiseaseDiary. 

In this post, we will give you the highlights of each session of day one, an option to read more, and links to resources.

Raising Awareness with Your Story: Why, Where and How!

In this session we heard from Nitika Chopra, Founder and CEO at Chronicon and the Chronicon Foundation. Nitika shares her story of Psoriasis and Psoriatic Arthritis, how she was diagnosed, what life was like after diagnosis and how to share your story. 

Tips when sharing your story:

• Know why you want to share it
• Who you want to share it with
• How you want to tell it

Resources:

• Chronic Con
• The Chronic Community
• AiArthritis Rant

Shared Decision Making

Shared Decision Making is something that I think we all can agree as AiArthritis patients is important. We want to feel heard, we want to understand our options, and we want to partner on what the right decision is for us and what the doctor recommends. In this session, Eileen Davidson, also known as Chronic Eileen, and Dr. Jennifer Barton, a Rheumatologist at Oregon Health & Science University and the Portland VA, show us just how important shared decision making is from both a patient and clinician perspective. 

Here are the key takeaways:

• Shared decision making requires engagement from both the patient and the clinician
• Prepare for your appointment, know why you are there and what you need
• Talk to other patients about what they have experienced and what questions they have asked their clinicians
• Find a doctor that will listen or set expectations with your clinician so they listen
• Do your research, learn about your disease, the treatment options and alternative resources that can help you
• Most importantly, advocate for yourself
  Read more.

Resources:

• Newly Diagnosed
• Jia Communication

Understanding Complex Research

In this session, Dr. Carla Greenbaum, MD talks about how research studies work and what to pay attention to to know if it was a good study or not. She also covered some studies around Type 1 diabetes and shared that researchers are studying not only patients showing symptoms but also those in the preclinical phase before they develop symptoms.

• What to pay attention to when looking at research studies:
• Is the study rigorous, robust and reproducible?
• Does the original design match the results?

Resources:

• Benaroya Research

What Autoimmune Patients Should Know About Clinical Trials

As autoimmune patients we have all benefited from clinical trials. Every medication we have ever taken went through one of these trials. Shalome Sine at CISCRPA explains to us what clinical trials are and what patients should know about them. 

Here is what you need to know:

• A clinical trial is a study used to answer a specific health question like if a new treatment works.1 
• Clinical trials go through 4 phases to test the safety, dosing and efficacy of treatment.
• Trials are reviewed by volunteer protections to ensure that trials are ethical, safe and follow the rules.
• Volunteers go through an informed consent process so that they understand the details of the study.
• You have the right to understand the study and can quit at any time.

Resources:

• CISCRPA

Advocacy Update: Highlighting Community Health Centers and the Importance of the 340B Program

The Autoimmune Association and Basim Khan, CEO of Neighborhood Health, provided an Advocacy Update that is near and dear to AiArthritis's hearts. This session was centered around access to community health centers and reform of the 340B program. 

Community Health Centers are non-profit organizations that help anyone in the community receive affordable primary care. 

340B is a pharmacy program that allows qualified health centers like community health centers to purchase prescription drugs at discounted prices. 

Community Health Centers and other organizations that qualify for 340B have the opportunity to provide all of their patients with discounted pricing, but some of them are not passing that discount to the patients. This is motivating many to advocate for 340B reform. The 340B bills hitting legislatures now require that these organizations pass these discounts onto their patients. 

Resources:

• Understanding 340b
• Find A Health Center

Knowing Your Rights

For those of us with AiArthritis diseases, knowing our health care plan is super important. With open enrollment right around the corner, this is the perfect time to get up to speed on what our plans entail and how to choose the right one.

There are many ways we pay for health insurance throughout the year: premiums, deductibles, copays, coinsurance, and out-of-pocket maximums.  In the session, Knowing your rights Joanna Doran, CEO at Triage Cancer, breaks down the key components of health insurance and how to get the care we need.



• There are many ways we pay for health insurance throughout the year: premiums, deductibles, copays, coinsurance, and out-of-pocket maximums.
• Not all healthcare plans are created equal.
• Do the math to compare plans.
• (Monthly Premium *12) + Out-of-Pocket Maximum = Total Cost for the Year
• 50% of the time patients are successful in getting the decisions overturned during appeal.
• Don’t pay your medical bills until insurance has sent the Explanation of Benefits for that visit.
• Know what laws and employee benefits are available to protect you when taking time off for treatments or a flare.

Resources:

• Triage Health - Appeals
• Triage Health - Financial Resources
• Triage Health