Advocating for Precision Medicine
While often the term "personalized medicine" and "precision medicine" are used interchangeably, AiArthritis differentiates the terms because we believe this will help advocate for access to biomarker testing, innovative treatments, and access to the right therapy at the right time for each individual OR subgroup. Additionally, "personalized medicine" is very close in terminology to "personalized therapy," which can include many factors, such as diet and exercise plans. "Precision" is very specific to science (biomarkers - blood, tissues, DNA/RNA, etc.)
Personalized Therapy
This is when outside factors and preferences are considered in a person's care. These can include medical history, personal preferences, complimentary options (diet, exercise) and then working with a doctor to choose the best plan.
Precision Medicine
This is the integration of clinical research and a patient's biologic makeup (biomarkers - blood, tissues). This demonstrates that a particular treatment should work best for this person's individual disease needs.
Why We Care
AiArthritis conditions have disease onset and progression that is unique to each person, yet therapy recommendations are mostly based on research that only target roughly 40-60% of people who are considered "the general patient population". But most patients do not tick all the boxes of textbook diagnosis; matter-in-fact, around 70% have comorbidities (more than one AiArthritis diagnosis or related condition.) Furthermore, most patients realize there is not a one-size-fits-all treatment and, as such, prefer therapies that blend pharmacologic with other alternatives (diet, exercise, fatigue management, etc.) In a poll by AiArthritis in 2017, 87% of patients stated they wished there were treatments designed to work better for their unique disease needs, but most did not believe it could ever happen.
The good news is research in the rheumatology space IS focusing on both precision medicine. Also, complementary medicine (non-pharma options like massage, meditation, tai chi, music therapy, guided imagery, and dietary supplements) are popularizing - and recommended in addition to other therapies.
Research has shown that early intervention with the right treatment is essential for highest chance for remission and decreased potential for disability due to AiArthritis diseases. The closer we get to adopting precision medicine, and incorporating personalized needs for each individual, the closer will get to improving long term outcomes for patients and decreasing costs for the healthcare system.
PM Coalitions and Advisory Boards. In addition to our work in Precision & Personalized Medicine, we are members of:
- the Personalized Medicines Coalition
- the State Policy Principles to Support Access to Biomarker Testing Group - Led by American Cancer Society Cancer Action Network (ACS-CAN)
- CEO, Tiffany Westrich-Robertson, is a member and Advisory Board participant for the Innovation and Value Initiative (IVI)
- CEO, Tiffany Westrich-Robertson, Senior Advisor, ICER 2023 Advisory Group on Advancing Equity Goals in Health Technology Assessment
- CEO, Tiffany Westrich-Robertson, sole Patient Organization representative, Clinical Trial Transformation Initiative (CTTI) Modeling and Simulation (Disease Progression Modeling) Working Group
- Bristol Myers Squibb - Precision Medicine Advisory Council
- ISPOR - leading professional society for health economics and outcomes research (HEOR) globally.
- Let My Doctors Decide - Led by Autoimmune Association
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Our Priorities
We will continue our work to achieve these priorities through our public speaking events, educational materials & resources, as well as through our AiArthritis Voices program, which we encourage you to sign up for!
AiArthritis CEO one of the first persons living with our diseases to speak as an biomarkers expert, alongside physicians and researchers.
Engagements Include:
- 2023: Testifying at state levels nationwide to advance precision medicine
- December 2022: Personalized Medicine Caucus, Capitol Hill, Washington D.C. - 1st Autoimmune Patient Speaker to ever present to the Caucus
- September 2022: Health Advocate Summit - topic Health Technology Assessments/QALYs
- August 2022: Florida Biomarkers Legislation Virtual Meeting - topic biomarkers
- July 2022: National Conference of Insurance Legislators (NCOIL) - topic biomarkers - 1st Autoimmune Patient Speaker to ever address the panel
- April 2022: New York BIO - The Future of Biomarkers, Speaker (Video above)
- Plus seven years of conference attendance, coalition meetings, and following research and policy impacting precision medicine. We ARE the experts in the autoimmune and autoinflammatory space.
Patient-Peer Education
Precision Medicine and Personalized Therapy research in immunology is on the rise and we are dedicated to learning about it and teaching other patients how it can impact their lives.
Check out our Knowledge = Empowerment Public Policy Program/Precision Medicine
Research Advocacy
In conjunction with our new AiArthritis Database, we will collect data that can be used to influence policy efforts that limit patient access to treatments.
Access to Biomarker Testing
Biomarker testing can help with diagnosis, understanding potential disease severity, and matching patients with the best treatment for their unique needs.
AiArthritis Research Database
The AiArthritis Research Database was built and is housed inside FORWARD National Data Bank for Rheumatic Diseases. It will be used for research that expedites diagnosis and improves disease management through precision medicine and personalized therapy. Data will also be used to influence legislation.
Access to Treatments
As research demonstrates certain patient subgroups respond better to one therapy over another, we will advocate for access to those treatments.
Innovation in Research
We support research into new therapies that can help patients achieve improved quality of life and better outcomes.
Additional Innovative Patient-Inspired Precision Medicine Projects
Our organization has been investing time in precision medicine - and the need for each patient to have the best therapy for their needs at the right time. These efforts often blend patient education with research and data collected to influence public policy (access to these therapies). We will be building on these efforts to include more research and access to alternative therapies as well as pharmaceutical.
AiArthritis Voices 360 Talk Show
We've been talking about Precision Medicine & Personalized Medicine for years, because we know how important this is to those living with AiArthritis diseases. Check out some of the talk show episodes where we put this topic on the table:
Patient-Led Research Review EULAR 2020: Treat to Target - Remission IS Possible!
Full Episode 38
SHORT VIDEO CLIPS FROM BIO International 2022 Interviews
Short Video: Ethical Importance of Counting Subgroups in Research
The importance of including realistic patient subgroups into clinical trials so the end product efficacy and safety information reflects all of us - and not only the general population criteria studied in the research.
Short Video: Diagnosis & Matching Treatments,What You & Your Doctor Can Do
Precision medicine can help match treatments to the individual based on unique biologic markers. While this is very developed in cancer, this is still in the research phase for AiArthritis diseases.
Short Video: Biosimilars vs. Generic
In lupus, over 50% of patients have high biomarker IFN-1, which means it's possible an IFN-1 blocking treatment may show good results in these patients. These types of tests could also provide information on whether a patient may benefit from these types of treatments first, prior to trying and failing others.
Short Video: What Patients Should Understand
BioTechnology Expert at Biotech Primer, who presented a session called Gene Therapy 101 for Non-Scientists. Tiffany attended that session and was excited for an opportunity to speak one on one with Kevin, who shares some highlights from this conversation and things to think about - such as how long with gene therapy last? What are the challenges? The benefits? How does this relate to AiArthritis diseases?
Short Video: Whole Person Care Plan Using Virtual Platforms
At AiArthritis, we believe in matching patients to the best therapeutic options for their unique needs, which includes access to a great healthcare team who is considerate of personalized needs. At BIO International 2022, AiArthritis CEO, Tiffany Westrich-Robertson, interviews Kurt Tamaru MD, MBA, CEO/CMO/Founder of Guardiant Health - a provider of virtual health care services that focus on an integrated team approach. They also collect lab and physician data and digitalize it to understand better how best to serve the "whole needs" of each person.
Impact Check. Tell us why the work we are doing to increase access to personalized and precision medicine is important to you!
Thank you, AiArthritis!
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International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Toll Free: 1-877-609-4226
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Copyright 2024. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. 501(c) 3 Nonprofit Tax ID: 27-1214308.
