Patient Perspectives--American College of Rheumatology
Recently, I entered a poster for the upcoming American College of Rheumatology (ACR) meeting in Chicago. This year they offered the opportunity for patients to enter posters focusing on patient experience living with an arthritic condition. This includes the full gamut of rheumatic and osteo conditions. It is a new part of ACR and frankly, no one knows at this point how it will turn out or what they will do with them once they make selections of the ones for display.
Soliciting patient ideas
The poster had to address the following question:
“What adaptations did you and/or your healthcare team adapt to better care for your health?”1
The deadline was originally June 1, 2018 but was extended to June 15, 2018. Since it is a new part of ACR it did not get as much notice as it deserved. I found out about it by pure happenchance and I had two weeks to get mine together. It was a quick idea that I turned into something that might work.
My poster is sponsored by the Arthritis Foundation. Each entry had to be sponsored by a stakeholder in ACR. The rules for sponsorship read as follows: “ACR / ARHP members and non-members are eligible to submit a poster. The primary author must be someone who is living with a rheumatic disease. Submissions must include a patient sponsor organization, such as a nonprofit patient group or pharmaceutical company.”1 In addition, each poster submitter had to agree to attend the ACR if their poster was selected.
This is a good reason to have a sponsor since in my case I could never attend ACR without support from a third party. So, I know that if my poster is selected the foundation will help fund my attendance. It is not stated but the implication is that the sponsor will assist the patient in attending the event.
Medically-supervised weight loss program
My poster is about multi-disciplinary collaboration for weight loss. Since 2014, I have had the good fortune to lose about 140 pounds. Yes, that is a lot and I have a lot more to lose. But I have a goal and a reward. If I can lose 30 more pounds, I will be able to ride the donkeys for an overnight stay at the bottom of the Grand Canyon. Something I have always wanted to do but requires a weight of less than 200 pounds.
As I write this article my weight is 221 lbs. The extra 10 pounds is a safety margin, so I do not get out there and tip the scale over the required weight limit. Hopefully weight loss is a topic that will interest the judges but there are no guarantees. Submission of the idea did give me a chance to sit back and look what I had accomplished. I must admit, it is a good chunk of weight to have lost.
I had to submit my poster and then ACR will judge the content and decide if it meets the guidelines of ACR. If it does I will get to attend at least part of ACR. While in attendance I will do a live presentation to anyone who wonders by during the poster presenting period. I am not expecting a big crowd to hear me talk about being healthier because of weight loss.
Losing that much weight is a reward in and of itself. I feel and look much better and that is a reward all by itself. Now the question always comes up about how I did it? I entered a medically supervised weight loss program sponsored by my endocrinologist who carefully managed insulin and blood sugar requirements. I ate only approved foods (shakes and protein bars and some vegetables with no fat seasoning) for almost 10 months. Then I joined a popular weight loss program. During the first step, I lost about 100 Lbs. and after that, I have lost about 40 pounds. This has taken over 4 years to accomplish.
You can share your idea too!
My hope is that the patient poster program will be open next year as well. If you are interested, it is appropriate to begin thinking about your patient poster idea, so you can secure a sponsor. I was fortunate in that the Arthritis Foundation was willing to sponsor my idea. However, I am sure pharmaceutical companies will sponsor future patient posters and I am sure there might be other sponsoring entities as well. So, think of great ideas and let’s meet next year at the presentation. I know I am already plotting a different, hopefully, better idea, for next year.
When was your last flare?