It’s been a busy and productive year For ITSAN!
Here are some Highlights from 2018:
- ITSAN works on a state level in Georgia to change Step Therapy protocols mandated by health insurance companies, which require patients to have to “try and fail” cheaper medications before allowing access to more expensive options such as the biologic, Dupixent. As we know, our patients can not go back to steroid treatment and need access to other medications that they and their practitioner believe are best. HB 519 passed unanimously in the house, but ran out of time to pass through the senate. It is expected to pass through into legislation this coming session.
- 2 ITSAN delegates, Dr. Raj Kooner and Andrew Boroweicki, represent ITSAN at the American Academy of Dermatology’s Annual Conference and exhibit with the Coalition of Skin Diseases.
- Over 400 ITSAN members file a topical steroid adverse effect report to the FDA. Follow up with the FDA leads to the next objective of creating a petition for our community to submit.
- Jodie Ohr, ITSAN Secretary, develops TSW/RSS Activist Kit for members; including a TSW power point presentation, adverse effect reporting, and letters to treating physicians, and elected officials.
- Kelly Barta becomes ITSAN President.
- ITSAN acquires non-profit status in the state of GA allowing more access to future grant applications.
- ITSAN exhibits at the International Investigative Dermatology (IID) Conference with over 3,000 in attendance, connecting with industry leaders, scientists and doctors to tell our stories and garner interest into future research.
- Kelly speaks on grassroots advocacy at the Eczema Expo put on by the National Eczema Association and makes key connections with many in the eczema community.
- ITSAN is accepted as a member of the International Alliance of Dermatology Patient Organizations (IADPO)
- 2 ITSAN delegates, Jodie Ohr and Kelly Barta, attend the American Academy of Dermatology’s Legislative conference and meet with 13 Congressmen and Staffers to tell the TSW story. This conference includes a developmental day with the Coalition of Skin Diseases, helping us make our non-profit more effective.
- Kelly is invited into a meeting with DermaCare Access Network in DC to participate in efforts surrounding Step Therapy Amendment on a federal level.
- Meeting with consultant, Jean Pickford, to help develop a strategic plan for ITSAN.
- Begin educational Webinar series for members
- Kelly shares the TSW story to nursing students at Georgia Sate University
- Work with the National Eczema Association in developing a “Patient Bill of Rights”
- ITSAN becomes a member of Derma Care Access Network (DCAN)
- First ITSAN conference in Atlanta!
- Kelly attends and speaks at Step Therapy Congressional Briefing in DC, also connecting with industry leaders who are interested in partnering with us regarding TSW research.
What’s in store for 2019?:
One of our chief priorities is to conduct a prevalence study. In order for TSW to be widely accepted by the medical community, prevalence must be determined. Because there are ethical issues involved, it would be very difficult to run a study like this just asking people to stop using their medications. Our hope is that we will be able to partner with one of the pharmaceutical companies who are developing new biologics for the AD community. If we can document the outcome of the placebo arm of these studies, what happens when these individuals stop using TS, we should be able to discover prevalence. Kelly is planning on meeting with several individuals who are involved in Research and Development of a high profile pharmaceutical company in March. After determining prevalence we would apply for a diagnostic code with the World Health Organization.
Another goal is to start a Patient Registry in Redcap that would be available to scientists for future research. We are so excited to begin that process by currently working with a group of dermatologists in Denmark and the University of Copenhagen who are developing a TSW survey for our members that will be inputted into Redcap.
We believe that there could be a genetic biomarker that would identify those who are unable to properly metabolize steroids and should pursue different forms of treatment for their chronic skin condition. This is another research objective we are looking into and will be contacting several research facilities in hopes they will partner with us in the near future.
Armed with over 50 patient stories from around the world, ITSAN plans to exhibit at as many medical conferences as we are able to in the coming year. These stories showcase that TSW crosses all lines; that this is happening to individuals of every race, every age, both male and female. It is so important to connect one on one with medical professionals; to tell our stories and let them take a look at the evidence in numbers. Also, pictures speak a thousand words! These conferences include:
- American Academy of Dermatology Annual Meeting – March 1-5 (19,000 in attendance)
- Society of Investigative Dermatology Annual Meeting – May 8-11
- Eczema Expo – July 19-22
- American Academy of Dermatology Legislative Conference – September 8-10
- Integrative Dermatology Symposium – Oct.3-5
- Pediatric Dermatology Research Alliance Annual Meeting – October
We have had nearly 400 of our members report an adverse effect to the FDA and have been instructed by them, as a next step, to develop a petition. We are hoping that when this is completed TS will be reviewed and that the FDA will make changes in labeling that would include TSW as an adverse effect and put clear limits on use and monitoring requirements.
As far as ongoing support measures for our members are concerned, we want to focus more on education, providing monthly webinars and biannual conferences. We are also in the process of developing a forum on our website, along with additional resources, that will allow members to access information on topics and questions we all deal with.
All of these initiatives come with their own price tags, which doesn’t include operational expenses for our organization. Because TSW is still considered an emerging diagnosis, there are not many physicians who have been willing to stick their necks out and come on board, openly supporting us. This provides an extra challenge in raising the money we need to accomplish our goals, since applying for many grants require the backing of the medical community. We currently rely solely on our members to support us financially.
Following is an estimated breakdown of these expenses for the coming year. I have added in compensation for 2 staff members, as the work load involved in accomplishing our mission is impossible on volunteer hours alone. We have survived on a couple of volunteers carrying ITSAN up to this point, but it is no longer realistic or possible.
Please consider giving significantly before December 31st. Having sufficient funds will enable us get over that challenging hump, to where we will finally have made the connections needed and have the research backing to begin applying for large grants. These grants will assist us tremendously in bringing global awareness to TSW and promoting research into mechanisms and more viable treatments, making TSW a thing of the past. They will also allow us to offer much more support to those suffering and their families.
- Website forum, patient registry, and site upgrades: $8,000
- Representation at 2019 Conferences: $8,500
- Webinar Series: $2,700
- Operational costs for ITSAN, including staff compensation for 2 people: $68,000
Let us know if you would like to donate to a specific event or project and we will designate your money there. If you would like to see our financial reports from previous years, please send that inquiry to our treasurer, Susan Ryza @ Sryza@itsan.org.