Myeloma is a relatively uncommon form of cancer; the American Cancer Society reports a few more than 32,000 new cases are diagnosed in the US each year, out of the estimated 1.8m total overall cancer diagnoses. Still, those diagnosed myeloma patients and their doctors are highly interested in pursuing a cure and beating the blood cancer.
HealthTree.org is a crowdsourcing platform that seeks to match up myeloma patients with clinical research studies. Outsourcing-Pharma (OSP) recently chatted with founder Jenny Ahlstrom (JA) about the organization’s mission, and how they’re working to enlist the help of patients to accelerate development of therapies to treat the disease.
OSP: Could you please tell me the ‘elevator presentation’ of HealthTree.org—what it is, what it does, who you’re looking to connect with, and why you stand out in the industry?
JA: HealthTree is a data registry and tool that patients benefit from over the course of their disease. Patients receive benefits while they contribute to cancer research; you can think of it like an online crowdsourcing platform that enables patients to explore treatment options, find clinical trials based on their stage of disease and lab values, and contribute their de-identified data to accelerate research and chat anonymously with their "myeloma twins", other patients whose diseases have similar genetic traits.
What makes us stand out is our ability to go back to patients over and over again to accelerate future research.
OSP: Please tell me about myeloma—how many patients are diagnosed, how therapies and research have evolved, and unique challenges the disease faces in the clinical research realm.
JA: Currently there are approximately 120,000 living myeloma patients, with approximately 32,000 new diagnoses each year. There has been a lot of development in myeloma research. There are currently over 15 approved therapies that can be used in combination.
According to the Wall Street Journal, there has been more development in myeloma than any other cancer. Half of the patients die within five years of their diagnosis.
While there are many new treatments on the horizon, the challenge will be to discover which therapies can be used in the right combination and in the right order for the right patient.
OSP: I imagine your status as a myeloma patient yourself gives you a very unique perspective. Could you please tell us a little bit about that?
JA: I was diagnosed with multiple myeloma in 2010 after my family had recently relocated to Mexico. As a mother of six, I was immediately determined to fight this disease to be around for my kids. I started the CrowdCare Foundation, The Myeloma Crowd and eventually the HealthTree portal because I felt so lost after my diagnosis.
I created the resources that I wish had been available to me back in 2010 to help other patients make informed decisions and to help accelerate research. Every patient has to reinvent the wheel when they're diagnosed, and we want to change that.
OSP: Please tell us about the myeloma/COVID-19 study—what are the goals, who the patient population is, and how things have progressed in the weeks since you launched?
JA: On April 16, 2020 we launched an observational study of COVID-19's impact on multiple myeloma treatments and patient outcomes. The aim of the study is to help patients and physicians use real data to drive future medical decisions. In less than a month, 1,076 patients signed up to participate!
All participating patients had to fill out a HealthTree profile by contributing their de-identified health data and answering survey questions related to their outcomes during the Covid-19 pandemic. The anonymous answers will be aggregated and analyzed by myeloma researchers to identify recommendations for patients navigating myeloma during the Covid-19 pandemic.
Initial study results will be available in July, and we will publish more extensive results in December.
OSP: Can you offer any perspective on how COVID-19 is impacting the clinical research industry in general, and blood cancer studies specifically?
JA: Clinical research and clinical trial enrollment in hematology has slowed somewhat during COVID-19 but myeloma progress continues. There are myeloma therapies that could be FDA approved this year.
After the initial surge in cases, myeloma clinical trial enrollment was halted but studies are beginning to open again. The myeloma experts are seeing myeloma patients come in with more bone damage or other organ failure and are now emphasizing that patients’ myeloma treatment needs come first over COVID; each facility is taking extra precautions to ensure patient safety.
HealthTree provides a unique opportunity to conduct a wide variety of observational clinical trials or a way to complement drug based clinical trials.
OSP: Is there anything you’d like to add?
JA: I think the pandemic bringing to light a lot of the issues in our healthcare system. This is why we felt we had to create HealthTree; every cancer patient has to reinvent the wheel when they’re diagnosed.
They need to become educated quickly so they can be adequately prepared for shared decision making on life and death treatment choices. It is so hard right now to do that – this is why we wanted to create this tool. And because it’s such a common problem across all diseases, we've been invited to create HealthTree for 50+ other conditions.
At the end of the day, patients are the most motivated stakeholders to cure disease; the other stakeholders aren't necessarily motivated to cure -- they might be motivated to treat the disease. That's why we decided to put the power in the hands of the patient in conjunction with the research community.
(rightdx/iStock via Getty Images Plus)