LIVESTRONG says they are living strong

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Kathy LaTour blog image

On Thursday Doug Ullman, the president and CEO of the LIVESTRONG Foundation, was to have delivered the state of the foundation report to the gathering of more than 500 leaders, partners, grantees and advocates from around the United States and the world who had gathered in Chicago. Instead, operations executive VP Andy Miller took to the stage and said that, as cancer survivors we are used to adjusting when things don't go as planned, and as Ullman was stuck in the weather somewhere, he would be presenting the state of the Foundation. No matter who delivered the message, it was clear: The foundation is strong and it's not going anywhere. Miller didn't ignore the elephant in the room, conceding that the admission by Lance Armstrong that he doped was a shock and disappointment to everyone. But he said that Lance did the right thing distancing himself from the Foundation so it can continue with its mission to help every cancer patient and survivor live every moment of every day of his or her life. OK, enough about Lance and, no matter how you feel about Lance, get over it. The LIVESTRONG Foundation is moving on without him to keep offering myriad services and support to cancer patients and survivors around the country. Miller also unveiled the new Logo for LIVESTRONG – a double bar, the top one the ubiquitous yellow with black lettering that says LIVESTRONG and then the second, a black bar below that extends past the top bar that says Foundation. Reading from Ullman's prepared remarks, Miller said that the Foundation will celebrate LIVESTONG day on May 17th, moving it to the day the yellow wristbands were introduced nine years ago and away from the former day that Armstrong won his first Tour de France. He also said the foundation's 2013 call to action would involve working on the medical community to include all phases of the cancer journey into their care. The Foundation has been a primary source of support for research into survivorship issues by creating the LIVESTRONG Survivorship Centers of Excellence around the country. The reality is that nothing will ever change in how cancer survivors are treated until there is research behind it. In talking to Ruth Rechis, the director of research and evaluation, she reiterated that the foundation focuses on determining what people going through cancer need and finding ways to provide it. They have been surveying the patient community through their navigation hotline as well as holding meetings to bring together thought leaders in survivorship about what essential elements should be included in survivorship programs. From their home base in Austin, Texas, LIVESTRONG's navigation program offers phone support from 9 a.m. to 5 p.m. daily. Reichs says they are now exploring ways to expand the navigation model with needs assessments in other communities.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
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