ADVOCATE
Find ways to take action!
ITSAN‘s proposal for diagnostic ICD-10 code for TSW has been accepted and we need your help!
ITSAN submitted a proposal for a TSW diagnostic ICD-10-CM code and it has been accepted to go before the ICD-10 committee’s review board March 20. We need your help in voicing your support to get this across the finish line and implemented into the healthcare system!
We are looking for members of our community (and their loved ones, doctors, teachers, ANYONE!), who would be willing to provide letters of support to the ICD-10 code committee, explaining why it is so important for this condition to have its own code.
Introduction of a new ICD-10-CM code for TSW would enable healthcare providers to precisely report TSW cases, improving efforts to establish the true TSW incidence and prevalence. Having a TSW code would also enhance research endeavors and understanding of the natural history of this condition. Additionally, the availability of a specific code would increase awareness among healthcare providers about the existence and significance of TSW as a potential complication of topical corticosteroid use, thereby guiding the judicious application of high-potency TCS in the management of atopic dermatitis. We need this!!
Since there is still so much resistance to TSW in the medical community, it is up to us to flood this committee with letters of support, expressing the urgency and need for a TSW code.
Download the TSW ICD-10 Code Support Letter Template HERE!! Once you personalize your letter, the public comment period will open following the meeting; comments should be sent directly to NCHS at nchsicd10cm@cdc.gov. The window to submit will be March 21 – April 21. Please do not send letters before March 21!
Sign The Petition to Review the prescribing of topical steroids (UK)
Sign this UK community member created petition. At 10,000 signatures, the government will respond to this petition.
Click here to sign!
TSW Advocacy Awareness Campaign
Learn how you can get a Topical Steroid Withdrawal Syndrome Resolution in your state to help promote research and provide support and protection for TSW sufferers and their families!
- Watch the video “TSW Advocacy Training: TSW Awareness Resolution Campaign” with Kelly Barta, ITSAN Executive Board Member, for the tools you need to get a TSW Resolution passed in your state or province.
- Watch the video “TSW Advocacy Training: ‘Mock Meeting’ with a Legislator” for a step by step on speaking with your legislator.
- Find 7 documents below that you will need when you are reaching out to your legislator.
- Questions? Reach out to us by email at info@itsan.org
First Topical Steroid Withdrawal Syndrome Awareness Resolution Passed in Florida!!!
We are so proud of Tamy Bellis, whose advocacy efforts paid off in getting the very first Topical Steroid Withdrawal Syndrome Awareness Resolution passed in her home state of Florida!
This piece of legislation established a TSW Awareness Day in the state of Florida, and serves as a supportive document for our community in acknowledging the existence of TSW Syndrome, and the great need for research around the condition. Having a resolution passed in your state or province provides a credible source to bring to doctors who may not be supportive or aware of TSW Syndrome. It will help bolster efforts to gain recognition in the medical world and push forward work to address the need for product label changes and education around the proper use of topical steroids and their associated risks.
TSW Syndrome Awareness Resolution Signed by Senator Dennis Baxley, July 2023.
Watch “TSW Advocacy Training: TSW Awareness Resolution Campaign”
We know that TSW sufferers and caregivers are often struggling to be heard and understood. Learn how YOU can make a difference! Watch this video to learn more.
Watch “TSW Advocacy Training: ‘Mock Meeting’ with a Legislator”
See how easy it is to meet with your elected officials to ask for their help to recognize TSW in your state or province. Watch this video to learn more.
Below are 7 documents that you will need when you are reaching out to your legislator:
1. Download the TSW Awareness Resolution Campaign Checklist
2. Download the Email to Legislators template
3. Download Best Practices for Connecting with your Legislator
4. Download the TSW Awareness Fact Sheet
5. Download TSW Resources
6. Download Lucy’s story
7. Download the TSW Awareness Resolution
Top tip:
When connecting with your legislators, remember, you are looking to speak with State Representatives and State Senators who work with your state capital, NOT the Senators and Congressional Representatives who work in Washington, D.C. at the Federal level representing your state.
In the United States: to find your state senator and state representative input your street address here. You will be brought to a page that looks like this:
Image credit: commoncause.org
Click on the box labeled STATE. Your state senator and state representative will be in the list of your state elected officials.
A couple extra tips to keep in mind:
- Call or email to set up a meeting. This can be in person or Zoom. In person usually has the most impact.
- Show up in professional attire.
- Bring printouts to leave behind: TSW Resolution, TSW Fact sheet, etc.
- Tell your story.
- Introduce the Resolution and why it is important.
- Speak about how the Resolution asks for an official TSW Awareness Day for your state.
- Follow up with an email directly after the meeting thanking them for their time and linking them to information.
- Follow up again in a week. Many state legislative sessions (the timeframe your legislators meet in the capitol to conduct business) are coming to a close soon, so follow up keeps this top of mind before the session closes!
We hope you’ll join us in the effort, and look forward to hearing some awesome reports about TSW awareness in your state!
Email info@itsan.org with any questions.
Sign the Petition
Did you have the information you needed to make an informed decision about topical steroids?
Help us petition for safer, more accurate labeling of topical steroids!
Having standardized usage instructions on the label will help both patients and doctors prevent overuse as well as recognize symptoms of adverse effects when they arise.
Sign the petition here.
Together we can raise our voices and help end TSW Syndrome!
Image credit: change.org
Currently, much needed usage and dosing information about topical steroids is absent or confusing.
Watch this short video to learn more.
Report to the FDA: Advocate for the safety of others.
- You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world.
- Report here.
- If outside the US, please also report to your country’s equivalent to the FDA.
- Use the term “TSW” or “TSW Syndrome” when you report to the FDA.
- Medical providers can also report patient adverse effects during and/or after stopping topical steroid creams to the FDA.
Image credit: U.S. Food & Drug Administration
View steps on how to report to the FDA
Kathryn Tullos, ITSAN President and Molly Evans, past ITSAN Board Member share a step by step video on how to report to the FDA.
Send a Letter to the American Academy of Dermatology
TAKE ACTION! Download this template letter to write to the President of the American Academy of Dermatology. Share your story. Template letter credit: PCH Films. Learn more here.
Become a TSW Advocate!
ITSAN Board Members, Jodie Ohr and Kelly Barta present “Advocating for Change” a follow-up webinar to their presentation on advocacy at ITSAN’s virtual SPARK Patient Conference.
Click below to connect to topics from “Advocating for Change”
Share Medical Research with Your Doctor
As a TSW patient or caregiver you are an expert. You have individual needs that deserve appropriate care. Help your medical provider learn more about TSW Syndrome.
Below are resources on TSW Syndrome that may be helpful to share with your doctor:
- Press release from GOV.UK on steps towards TSW Syndrome awareness and prevention happening in the UK (Sep 2021)
- National Eczema Society and British Association of Dermatologists joint position statement on Topical Steroid Withdrawal Syndrome (Jan 2021)
- National Eczema Association (US) article, “TSW: What the Eczema Community Needs to Know Now” (Mar 2021)
- BBC Wales TSW article, “Topical steroid addiction: Patients call for more support” (Mar 2021)
- “What Every NP Should Know About TSW” by ITSAN President Kathryn Tullos, RN, published in NP Student Magazine (Oct 2021)
- Skin on Fire documentary (released Jan 2022)
- ITSAN website “For Doctors” – works cited at the end.
Share Your Story
Sharing your story can help prevent TSW and offer hope to others.
Connect with ITSAN to help raise TSW awareness.
Share your TSW story here.
Share Your TSW Experience with Your Doctor
Click below for steps on how to write a letter to your doctor – past or present – to help raise TSW awareness.
Write to your doctor.
Speaking up about your TSW experience is a way to help prevent TSW Syndrome. See below for steps to write to your doctor.
1. Gather a few of your TSW photos (3-5).
2. Write down your doctors’ names, office emails addresses, and physical addresses all in one place. Send the letter to the doctor’s practice rather than to a specific person.
3. Access a template “Letter to Your Doctor” in ITSAN’s Advocacy Kit located in the Files section of ITSAN’s Private Facebook Support Group here. Another template is available from Scratch That UK, an “online information resource, community and awareness campaign” for TSW. Find their “Guide to Writing to Your MP About TSW” here.
- Edit either letter to reflect your story – your own voice, details, pictures, etc. The templates are simply starting points to get going.
- The doctor’s letter template is written in an unemotional tone so as to not be off-putting – it will get them to hear you and consider your message.
4. Mail it off AND send via email if you can. Email can easily be forwarded to other physicians. Mail will get it into their hands and keep it on their desks to revisit. Send both if you can, but send at least one.
“You have a powerful story and there are thousands if not millions of people who need you to speak up…believe me, I’ve gone through my periods of fury, about what happened to me, all of the loss in my life, the loss in other peoples’ lives, but if that’s all you bring to the table, that doesn’t get very far…you have to be able to channel that in a way that’s productive and when you start seeing the change happening, it is so rewarding. Because it’s not just for you, it’s for countless people. You are changing the world.”
-Kelly Barta, ITSAN Executive Board Member
“I remember the singular moment I became an activist. I’m downstairs, everyone else is sleeping peacefully and I’m furiously just itching, itching, scratching, scratching, this is in the early days so it was a couple of hours literally every single night when I was experiencing this and everyone else in the world was completely oblivious and I thought you know what, my doctor, doctors, have no idea what has been created in me and they don’t care because I haven’t cared enough to tell them, so how can I expect them to quit doing this to other patients if they don’t know that it’s actually happened. That’s when I realized there is no one else, it’s got to be us. We are the ones that can make a difference.”
-Jodie Ohr, ITSAN Executive Board member
