Myeloma patients and advocates Jenny Ahlstrom and Lizzy Smith are featured in the The Daily Utah Chronicle.
A New Platform For Patient Advocacy
by Derek Edwards
November 21, 2014
While the chronically ill have always been something of a disenfranchised class, the Internet and social media now provide patients with a unique opportunity for collective self-advocacy. Jenny Ahlstrom and Liz Smith are two such patients who have recognized and embraced this opportunity. Their work provides an excellent example of how patients can and should utilize the connectivity of the Internet to advocate for themselves.
Both Utah women are myeloma survivors. Their website, myelomacrowd.org, is an example of successful cancer patient advocacy. “We met because I went on Twitter,” Smith said. She and Ahlstrom connected in Utah Valley after each discovered that the other was a myeloma patient. Myeloma is a cancer of the plasma; like many people, I hadn’t heard of it before. Extremely rare in those under 40, it’s a serious disease not only because it is a cancer, but also because it attacks the immune system.
Ahlstrom was already working on launching a myeloma website when she met Smith, who has a background in marketing and public relations. They’ve since successfully created an exemplary online patient community that has an influential voice at important cancer research centers like the Huntsman Cancer Institute and the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences. Myelomacrowd.org works to connect myeloma patients and those caring for them. Ahlstrom and Smith have eschewed the site-specific forum model, instead opting to reach out to myeloma patients with existing platforms like Twitter and Facebook.
It’s important that patients find ways to connect with clinical researchers and trial therapies. Ahlstrom stresses this point: “One of the key problems in cancer research is that, in adult cancers, less than five percent of the patients participate.” It’s not easy for adult myeloma patients to try to find myeloma-specific treatment, so many end up looking to their local general oncologist for care.
“If you have a specialized disease like myeloma, you really need to see a specialist … I started this [website]…because I was trying to get patients educated so that they would want to join the clinical trials.”
Their website has been providing patients with clinical trial information and evaluations via outlets like mPatient Radio, making sense of different approaches to treatment, and connecting patients with the same variants of the disease with the goal of increasing access to clinical trials. This approach has been adopted not only to accelerate research by increasing trial patients, but also to help patients get better treatments that have been shown to be more effective in treatment of their variant of cancer. They are not the first myeloma patients to benefit from this approach. Ahlstrom recalls the story of Stacy Erholtz, a myeloma sufferer who made headlines when she beat her cancer with a modified version of the measles virus after proactively getting herself into a clinical trial at the Mayo Clinic.
Patient-driven advocacy can and should extend to funding research. The organization over myelomacrowd.org, the CrowdCare Foundation, is now using the collective voice of its patient community to help drive research through crowdfunding for myeloma research projects. The organization is choosing projects from proposals from the patient community, vetted by both scientific and patient advisory boards, and is planning on introducing them at an international hematology conference in December. The organization already has one crowdfunding project in motion, the Kickstarter campaign “Songs for Life,” a music project intended to raise money for cross-cancer research.
The Internet provides formerly under-represented groups, such as patients with an advocacy solution, but only if members of those groups individually step up to the plate and participate in the process.
“We’ve been waiting on a cure for cancer for some time now. Something has to change. Our premise is that patients have to be more involved in helping to accelerate the cure,” Ahlstrom said. Patients should recognize that they can assist research, find better healthcare solutions and better advocate for themselves by reaching out to the burgeoning online patient community.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.