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 in acute myeloid leukemia (AML) which, having seen little change in the treatment landscape for many years, 8 new treatments were approved in 2017-2018 alone.
What does this rapid progress mean for patients, their families and caregivers?
“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,” notes Kathleen Weis, CEO of the Aplastic Anemia and MDS International Foundation.
“It became apparent very quickly that among the AML community – patients, family representatives, patient advocacy groups, specialist nurses and treating physicians – there was a tremendous knowledge gap,” says 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 adds.
“All the partners have one thing in mind and that is to improve the care for patients with AML,” says Dr. Gwen Nichols, Chief Medical Officer at The Leukemia & Lymphoma Society, whose group supports the Know AML alliance. There is a sense, not only within individual advocacy organizations, but among 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.”
Although there can be challenges in bringing together such a diverse group of people, says Brian Tomlinson, Chief Program Officer at CancerCare and Know AML advocate ambassador, the will to succeed is 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.”