Christine Benjamin, breast cancer program director for SHARE Cancer Support and vice chair of the Metastatic Breast Cancer Alliance, explains some of the new programs each organization will roll out in 2019.
Running time: 2:55
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Christine Benjamin: Hi there, my name is Christine Benjamin, and I’m the breast cancer program director at SHARE Cancer Support based in New York City, and I’m also the vice chair of the Metastatic Breast Cancer Alliance. And I’m here in San Antonio, I think this is my 5th trip, maybe, maybe more — you lose track after a while. So I’d like to talk a little about the Metastatic Breast Cancer Alliance and some of the projects that we’re working on. This year, we were so fortunate to be able to launch MBC Connect, which is a patient-powered, research-driven registry where patients can input their own information, and that information will be shared with researchers across the United States, and soon, globally. And information that people put in, they’ll also get some information back that compares them to other users. So it’s very interactive, and it’s a way for patients to be able to share information about their MBC history, their treatment, their quality of life, so that others may benefit from their own experience. And we’re hoping to sign up as many patients as we can, people can connect at MBCConnect.org. So that’s one project that we’re very excited about.
There’s going to be a 2.0 of MBC Connect coming soon in 2019, where patients will be able to be connected directly to clinical trials that they’re eligible for. So that’s an exciting piece to this project. The Alliance has a big focus in 2018, 2019 on clinical trials and providing information to patients about access to clinical trials, participation in clinical trials, what to be aware of when participating in clinical trials. We just came out with a checklist for patients so that they know their rights, they know what to ask, they know what information to look for so that they feel well informed when making decisions about clinical trials.
And I’d just like so say, for SHARE, we’ve just launched what we’re calling Talk Mets Tuesday, which is a dedicated helpline for metastatic breast cancer patients. They can call in any Tuesday and speak directly with a trained volunteer who is also living with metastatic disease. That’s available from 9 in the morning to 9 at night. We’re hoping to get the word out so people will call in. People do not have to feel alone when dealing with metastatic breast cancer any longer.
SHARE can be found at SHARECancerSupport.org, or people can call 844-ASK-SHARE.
We’re so happy to be here in San Antonio, we’re looking for new information that’s coming out, we have a bunch of volunteers in all the sessions, and we’re looking forward to their report back.
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