Jenny Ahlstrom knows firsthand the difficulty of finding a clinical trial quickly to stave off fast-hitting diseases and also matching up with one for which you're eligible. She was diagnosed with multiple myeloma in 2010, and her brother-in-law passed from acute myeloid leukemia (AML).
Now, her patient-oriented nonprofit, HealthTree Foundation, is launching a new tool to help AML patients find clinical trials and demystify the investigational drug process for this population following success in helping myeloma patients with similar resources.
“I wish we had had a tool like this that could have shown us a list of anywhere in the nation that we could have gone because we would have done that for him," Ahlstrom said in an interview about the difficulty trying to find a trial for her brother-in-law. "We just were totally unaware about how to do that, how to go about that process. So just facilitating that is stunning.”
Ahlstrom called the federal database of studies, ClinicalTrials.gov, a "mind cramp" and a "huge challenge." The old process of finding open trials through that database and speaking to your doctor doesn't work quickly enough.
"It’s not advancing the science fast enough for patients. It’s gonna take another 25 years at that pace," Ahlstrom said. When she was diagnosed with multiple myeloma, Ahlstrom looked through 450 open trials, painting a picture of the difficulty and time-intensive manner associated with finding treatment.
So, the foundation launched a trial-finder tool Tuesday that lets AML patients mine through 836 AML trials, of which 630 are actively recruiting, to find the one(s) that match their criteria. The tool, which pulls from ClinicalTrials.gov, allows patients to filter by study phase, drug class, specific drug targets, trial location, genetic mutations and other information to tailor specifically to their needs.
The foundation already has about 800,000 unique visitors and 9,300 patients in its data registry on the myeloma side. Patients contribute their own data to the registry for information like diagnosis, treatment provider, health status, prior lines of therapy, dosing and timing, medical records and labs, which are used to help curate a customized list of clinical trials. The registry is also used as a way to invite patients to perform research, Ahlstrom said.
Now, HealthTree is trying to replicate that success with AML patients through the trial-finder tool, an events platform, mentoring and coaching as well as a "university" that houses educational resources on the disease. All of these resources combined are aimed at getting patients the right treatments and boosting the low enrollment figures for clinical trials, which can be in the low single digits, Ahlstrom said.
“Unless they’re in an academic center that is offering an open clinical trial, I think joining a clinical trial is sort of a foreign concept to most patients. They don’t understand the potential to receive an earlier use of a type of therapy," the founder said.
The organization also wants to ensure medical innovation for AML doesn't stop after a string of FDA approvals in recent years for drugs like AbbVie and Roche's Venclexta, Celgene's Idhifa and Pfizer's Daurismo. The added pressure on clinical trials is much needed as drug hopefuls from Aprea Therapeutics, Amgen, Magenta Therapeutics and argenx have all hit snags in recent quarters.
"All of these FDA approvals, eight or nine of them over the past few years, makes people excited, but also think maybe the work’s been done, but really there’s so much more in terms of studies and research that really needs to be happening in order to really affect this five-year survival rate that is so low," said Katie Braswell, HealthTree's community director for AML patients, in the joint interview with Ahlstrom.
about the author
Katie joined the HealthTree Foundation as the Community Director for AML in 2021. She is a registered dietitian who previously worked at the VA hospital in Dallas, Texas where she coached veterans with blood cancer on how to use nutrition to improve their treatment outcomes and minimize cancer-related side effects. Katie is passionate about health education and patient empowerment. In her spare time, she loves to experiment with new recipes in the kitchen, spend time running outdoors and travel to new places.