From advocacy groups to physicians, caregivers to nurses, everyone is working with one vision: to improve the lives of patients. And that’s why working together is key.
That was the message that came out of a webinar which we hosted on May 3 as part of our focus on AML World Awareness Day, Knowledge is power – using education and awareness to drive positive change for patients.
It brought together some of the leading voices in the therapy area, which is in something of a transition phase as four new therapies are set to revolutionize the treatment landscape. Our panelists were Dr. Gwen Nichols, Chief Medical Officer of The Leukemia & Lymphoma Society (LLS), Kathleen Weis, Chief Executive Officer of the Aplastic Anemia and MDS International Foundation (AAMDS), Gary Nolan, Know AML secretariat representative, and Brian Tomlinson, Know AML patient advocate ambassador and Chief Program Officer at CancerCare.
From lab to clinic
Dr. Gwen Nichols spoke about the ground-breaking Beat AML Master Trial. It’s a multi-arm, multicenter study that offers everyone who wants to take part an experimental drug option. Because the trial is sponsored by the LLS, not any one pharmaceutical company, patients are being treated with promising novel/novel combinations that would not be possible within a traditional trial framework.
“For many years we have used the same combinations of drugs to treat AML, but we said we need to do better,” remarked Dr. Nichols, explaining that the scientific understanding of AML had increased drastically in recent years.
“We wanted to make sure everything we have been learning about the biology of AML actually benefits patients.”
So far, more than 200 people have been enrolled on the study, which has required a huge amount of collaboration with a wide range of stakeholders.
LLS has had to work extremely closely with fellow advocacy groups, pharmaceutical companies and the FDA, to name but a few.
“We think we are the right people to lead and convene this because we put the patient first. Our long history of supporting research means we have relationships with investigators and pharmaceutical companies,” said Dr. Nichols.
“But we are not doing it alone.”
Responding to changing needs
Kathleen Weis explained that a constant feedback loop was the best way to ensure changing educational needs were met.
AAMDS holds a number of webinars and face-to-face conferences throughout the year, all designed to educate, empower and support people living with bone marrow disorders.
“The goal is always to help people learn about AML. We want to empower patients so they are confident and comfortable to have conversations with their healthcare provider and to navigate the system,” said Kathleen.
“We also do a lot of work with caregivers to ensure they are receiving the support that they need because they are critical to the patient journey,” added Kathleen.
She explained that the webinar topics were under constant review and were changed in accordance with feedback from those who took part. At a time when new discoveries and treatments are expanding the conversation around living with AML, flexibility is particularly important. The feedback loop also gives advocacy groups meticulous understanding of patient needs that can feed into research and development.
In 2012, AAMDS became the administrators for the MDS Clinical Research Consortium, a collaboration of six major academic medical centers. The five-year, $16million initiative aims to address major gaps in the MDS-related clinical research, include refractory MDS that progresses to AML.
There’s a lot to be said for working together – and nothing says it louder than Know AML, a collaboration on a global scale.
Gary Nolan and Brian Tomlinson spoke about the unique program, which has brought patients, advocacy groups, nurses, doctors and researchers from around the world together under one flag.
“The mission is to drive awareness and education, to raise awareness of the resources and support available, and facilitate education from a global perspective. To identify the unmet need and respond to that,” said Gary.
It is led by a panel of “ambassadors,” like Brian, who meet regularly to discuss what’s needed globally. They then work with Know AML facilitators to fulfill that need. Once materials are developed, they are available for the worldwide network of advocacy groups to use. It means less duplication, fewer resources and a more streamlined education pipeline – all extremely important in a world of fast and furious discovery.
“Know AML has been built by the community for the community,” said Brian. “Patients are at the center and it is the 17 ambassadors who drive the agenda to review resources and materials.”
The power of this collaboration was seen on AML World Awareness Day, which reached more than 4 million people in around 20 countries.
To watch the full webinar, click here.