When research suddenly leaps forward, patient and healthcare professional education needs to catch up quickly. And it takes the whole community – patients, advocates, professionals and pharma – to bridge that gap.
That is exactly what’s happening at the moment in acute myeloid leukemia (AML), which after seeing little change in the treatment landscape for the last 40 years,1 is standing on the cusp of a revolution. Four new treatments were approved in 2017,1 and the therapy area community is now working hard to understand which drugs or combinations of drugs will suit which patients.
They also need to ready patients, their caregivers and their healthcare teams for the changes, by making sure they are educated on the options.
“As science progresses and the treatments and therapies are changing, we’re making sure that we’re trying to stay ahead of that as best as possible by making sure our patients are well-informed,” said Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation.
She was one of four leading members of the AML community who discussed the issues, the challenges and the solutions during a Change Together webinar.
Knowledge is power – using education and awareness to drive positive change for patients was held as part of our special series of content marking AML World Awareness Day.
“There were several approvals by the FDA in 2017, and it became apparent very quickly that among the AML community – patients, family representatives, patient advocacy groups, specialist nurses and treating physicians – there is a tremendous knowledge gap,” said Gary Nolan, secretariat member of Know AML, a global alliance of advocacy groups, healthcare professional associations and other interested parties.
“A key objective of Know AML is it to work collaboratively with the community to try to bridge this knowledge and education gap,” Gary said.
Dr. Gwen Nichols, Chief Medical Officer at The Leukemia & Lymphoma Society, whose group supports the Know AML alliance, said: “All the partners have one thing in mind and that is to improve the care for patients with AML. There is a sense, not only within individual advocacy organizations, but within pharmaceutical partners and the regulatory agencies, that we need to do better.
“There’s a will to collaborate because we’ve seen advances in other diseases and it’s time to see them in AML.”
Webinar facilitator, Jenny Kite, Stakeholder Engagement Manager at Astellas, asked the speakers if it was difficult to bring together such a diverse group of people.
While it could be challenging, said Brian Tomlinson, Chief Program Officer at CancerCare and Know AML advocate ambassador, the will to succeed was stronger than any differences in outlook.
“The patient organizations and professional organizations are not looking to compete: we are looking to collaborate, so we can support anybody impacted by AML and get them the help, the hope and the resources that they need,” he said.
“I think that’s pretty universal across all of the organizations. If you asked the other ambassadors or member organizations, they would give the same response, that they are all really just looking to improve things for these people.”
To watch the webinar, click here.
- OncLive (2018). Novel Agents Advance Field of AML. Available from: https://www.onclive.com/web-exclusives/novel-agents-advance-field-of-aml (accessed June 2018).