This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process
In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management.
We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as pa...
This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process
In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management.
We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as patients, identify what works best for our unique needs, we have to consider all options (both pharmaceutical and non-pharmaceutical). Just as with our biologics and other disease modifying treatments - where one works for one person and not the other - we need to think about alternative therapies the same way. For example, just because you “tried diet”, did you try all the diets?
We all need to find our own right combination of therapy - but what does that look like to you? Then we also need access to that option, which can be challenging, but together - with AiArthritis - we can fight to make access a reality!
*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 2, we are putting a topic on the table for the first time to open conversation - and continue break out conversations (360its) to further explore what is most important to patients. Make sure your voice is counted!
Show Notes: Episode 75 – “The Whole Picture: Holistic, Personalized Therapy”
00:36 – Tiffany welcomes listeners.
01:05 - Tiffany is joined today by AiArthritis Voices 360 recurring co-hosts Bridget and Deb.
01:15 - Deb Constien was diagnosed with Rheumatoid Arthritis at the age of 13.
01:50 - Bridget Serrett has multiple autoimmune diseases and genetic conditions.
02:49 - Today’s topic is personalized, complementary, non-pharmacologic therapies.
03:50 - In order to manage a systemic, whole-body disease, we need holistic treatment options.
05:36 - Deb is a dietitian, although she is currently medically retired.
07:00 - Deb did not have access to complementary therapies when she was younger because they are expensive and not covered by insurance.
07:41 - Deb does not have any inflammatory triggers, so she did not find relief from any particular diet.
09:09 - Always tell your doctor if you are taking any supplements because they need to know anything you are taking to manage your medications.
09:21 - Bridget has tried every complementary therapy she could find.
09:38 - She also has found that most people do not have access to quality complementary therapies due to prohibitive costs.
10:47 - Tiffany has always been interested in complementary therapies, especially exercise.
13:30 - There is an access barrier for most patients to the recommended complementary therapies because most are not covered by insurance or national healthcare systems.
14:28. - Data drives access, but the voices of patients about their need for access are also. Important to eliminating barriers to these therapies.
15:21 - Tiffany explains clinical practice guidelines.
16:28 - Clinical practice guidelines provide justification for access to insurance companies and national health programs.
17:07 - Deb is on the panel for the American College of Rheumatology to develop clinical practice guidelines for holistic, complementary therapies.
17:15 - Deb and Tiffany explain the ACR panel process for developing clinical guidelines.
23:53 - Many people have a limited amount of covered physical therapy sessions per year, which can lead to difficult choices about how to prioritize health needs.
26:35 - Personalized treatments are unique to the individual, so what works for one patient may not work for another.
29:01 - The elimination diet requires a lot of discipline and consistency to even find out if it works for someone.
30:52 - Access is important, and having the ability to find the combination of therapies that work for a patient is critical to successful treatment.
32:10 - Tiffany discusses the AiArthritis initiative in partnership with FORWARD National Databank for Rheumatic Diseases to collect patient information and conduct research to try and improve early detection / intervention and patient individuality as it relates to precision medicine and personalized therapies.
35:39 - Even Dr. Al Kim who is very invested in holistic guidelines does not spend much time during patient appointments on complementary therapies because the subject is currently very nebulous and inaccessible.
37:18 - There is some concern that unethical actors may take advantage of vulnerable patients when we incorporate providers that are not part of the traditional medical field.
40:17 - Chronic pain is getting its own code in the healthcare coding system.
40:43 - Tiffany explains the ICD-11 coding system and how this will help patients.
42:33 - Deb attended a EULAR session called “Not Another Pill: Integrative Pain Management Approaches” at the 2022 EULAR Conference in June.
43:40 - The Biopsychosocial Model is the gold standard for addressing chronic pain and includes a requirement that providers believe their patients and value them.
47:23 - Being dismissed by doctors causes significant delays in diagnosis and access to treatments, which contributes directly to poorer patient outcomes.
49:23 - Having a code for chronic pain may help eliminate barriers to treatment options that result from doctors being afraid their licenses will be in jeopardy with government regulating authorities for prescribing controlled substances too often.
50:51 - When patients go to a doctor who doesn’t believe them it can cause PTSD within the aiarthritis patient community.
52:24 - Sometimes when patients believe they are receiving treatments in blind placebo trials, they report improvement even though they are not really receiving any medication, which is called the placebo effect.
52:41 - Researchers wonder if the placebo effect could help uncover a mind-body connection that could help treat chronic pain.
53:15 - For more information on the mind-body connection research, check out our YouTube channel for a video on this topic.
53:55 - Complementary therapies are necessary because we need options for people who want to use fewer or no pharmacologic treatments.
55:40 - We need to hear from you on this topic! Email us at podcast@aiarthritis.org or find us on social media @IFAiArthritis on all platforms.
56:03 - Visit our website (aiarthritisvoices.org) to join our AiArthritis Voices program.
58:20 - For more information on medical cannabis or to get involved in advocating for legal access to medical cannabis, you can connect with Bridget on Facebook @cprcofcolorado (new website coming soon).
1:00:38 - To continue this conversation, donate to support the show, or for information on any of our initiatives, please visit us @ aiarthritis.org.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
