Why did you decide to create BAG IT?
I was diagnosed in 2001. I felt I was getting information on my tumor, but not how to handle it. I kind of struggled with treatment ... and I knew that piece was missing for me. ... You didn't know what (information) was reliable or not, so I wanted to do something about that. We formed a group along with oncologists and survivors, and we honed it down to ... an emphasis on coping with the diagnosis and help for caregivers.
Can you talk about the evolution of the information you will be adding to the bags?
When we first started to put together information for BAG IT, we were focused on the importance of helping people cope with their cancer diagnosis. It has evolved to ... offer individuals with cancer some tools to help them navigate the treatment process. We are finalizing a revision now to include a personal medical history and medication forms; calendars to record pain, side effects and appointments; and a handy guide to quickly identify cancer topics in our BAG IT resources. We also now include information that helps people make the transition from treatment to long-term survivorship. ... Figuring out life after treatment can be complex. Your life isn't going to be the same as before a diagnosis, and people need help adjusting--finding their "new normal."
How hard was it for you to get the organization off the ground?
It was hard, because the way we distributed (the bags) was through hospitals and oncologists. (We had to) educate them that this was necessary; that took a little while. We started in one office with 16 BAG IT bags back in July 2003. The number of patients we have reached has grown steadily each year, from 800 in 2003 to an expected 6,000 this year. We have helped over 15,000 individuals with cancer and their families to date. We expanded statewide about 15 months ago.
What is your hope for people who use BAG IT?
I hope they feel they can cope with their diagnosis a bit easier, understand the treatment process and advocate for themselves along the way, and learn what survivorship means for them as individuals. I hope they worry less with this type of information, and feel more in control and more hopeful along this difficult journey.
Where do the funds come from?
We have two events: Take a Hike for BAG IT! on Oct. 18 (this year), and a wine-tasting event at Sullivan's. I write grants, and we do fundraising, so we're always looking for new sources that want to help in this area of patient advocacy.
What is your ultimate aim for BAG IT?
Our goal is to help as many individuals diagnosed with cancer as possible. ... Many states are interested in BAG IT for their patients, as they don't have anything like this to distribute to them. Funding is an issue. We are in the process of applying for grants that would allow us to expand nationally, but currently, those outside Arizona are asked for a donation of $25 per bag to cover the cost of materials and shipping. ... Another goal we have is to promote patient advocacy. We are doing that in several ways. I participate on scientific medical advisory boards to give the patient and survivor perspective. ... This past December, we helped put on the national Life Beyond Cancer retreat at Miraval. The focus was to bring together women with cancer from all over the country who are interested in community advocacy.
What has the response been from those who have received the bag?
The response has been incredible. ... It's such an affirmation for me to keep doing this work. Also, 100 percent of the offices that started ... have continued to do it!