Wisconsin native Tom Chelius has been a key member of the ACTION team since day one. One of the first Advocacy Liaison’s to a support group, Tom models a perfect way to include advocacy in the West Bend, Wisconsin’s monthly support group meeting. Additionally, as a team leader for Wisconsin and for the In District Meeting Team, Tom has supported his group members in meeting with four elected officials in the last three months. A big Thank You and Congratulations to Tom!
Diagnosed at 38, Tom’s vivacity and humor through his 6.5 years with myeloma is a fabulous addition to the ACTION team and to the support group members he inspires to get involved regularly. I sat down with Tom and asked him to share some insights into advocacy from the patient perspective with our myeloma community.
Aimee: What made you get involved with Advocacy?
Tom: I was in an MRI scanner having my spine scanned for lesions as part of the initial testing for myeloma. Because I am claustrophobic, I was hopped up on Ativan for the scan. I had two ideas pop into my head: 1) To write a book about my experiences (little did I know they had only just begun); 2) To make something good come out of all of this. Although I am still considering it, the book hasn’t materialized (the Ativan wore off). The commitment to make something good come out of a really bad situation is something that stuck. This commitment was further reinforced by a cancer patient I met who, in his last email to me before he died, said, “We are survivors because God has plans for us.” I am hoping that my involvement is part of that plan.
On a less philosophical note, I do recall being asked about my anxiety during the earliest appointments that I had. I remember saying it was high because I was wondering how I was going to pay for all of this. I did not know how good my insurance was at the time and how lucky I was to have it. I cannot imagine how stressful it must be for other patients who do not have coverage for oral medications and cannot afford it. It is my belief that cancer patients should be worrying more about fighting their cancer than how are they going to pay for it.
Aimee: What has it been like to be the Advocacy Liaison for your SG for the last year?
Tom: It has been fun to have more of a role in my support group. It is great to have members who are very willing to meet with their legislators, sign postcards, etc. I hope the addition of a liaison helps keep them up-to-date with issues that may affect them now and in the future.
Aimee: What is your favorite part about being on the ACTION Team?
Tom: Besides being the first step to becoming Supreme Ruler over this planet, being part of the team also provides me with more insight as to what is going on nationally on the advocacy front. Nevertheless, probably the best part is meeting new people, be it fellow patients, legislators, staff, etc.
Do you recommend the ACTION Team to others?
Tom: I would recommend others to get involved, but with some reservations. Any patients, who are freshly diagnosed with myeloma, cancer or whatever or have health issues on their plate, have other things to focus on than advocacy. First, get through your treatments and then think about getting involved in advocacy. You will have an impressive story to tell and it is a great way to use your diagnosis for something good.
In addition, this can be very frustrating. You can spend a fair amount of time trying to do your part in pushing legislation forward, but it can very easily wind up not going anywhere. The last time the oral anticancer parity legislation was in Wisconsin, I had prepared to testify in a public hearing including reserving a hotel room to make sure that I did not have to worry about driving the day of the hearing. It was canceled while I was in a meeting going over my talking points. I was angry and disappointed, but am back at it again this time around. So if despite your efforts, a bill does not pass, do not take it personally.
Finally, if you get involved, you are going to be playing politics. You will be meeting with politicians (or their staff members) and they could be the person you did not vote for. They could also be the product of the campaign that called you a billion times during the campaign season and drove you nuts. It is important to be able to separate those feelings out and focus on the issue at hand.
While it has not been an easy road for the Wisconsin Cancer Treatment Fairness Act, Tom has been actively involved in moving it forward these past three years. This month the bill was reintroduced into the Wisconsin legislature and we are hopeful that this will be the year! Thank you Tom!