Monday morning my email inbox lit up. A Wall Street Journal article–both online and in the hard copy edition–about the FDA’s unprecedented approval of three anti-myeloma drugs in less than a month was featured front and center.
I had spoken by phone with the reporter who wrote the story for 30 minutes on Friday. I wasn’t mentioned, and that’s OK; Ron Winslow did an outstanding job on the piece.
While I rambled on, I wasn’t thinking about coming up with a key quote so I could make the article. Knowing that Mr. Winslow is a medical writer for the Journal, I spent the time wearing my activist hat. I explained how having so many therapy choices was a double edged sword. How there was a broad continuum of treatment philosophies, from the incremental approach embraced by Mayo Clinic, to the aggressive Total Therapy approach practiced by UAMS, Huntsman in Salt Lake City and Dr. Tricot at the University of Iowa.
I stressed how difficult it can be for hematologists and oncologists that aren’t myeloma specialists–and sometimes for specialists, too–to know which way to turn, and how and when to use one or more of the new or established drugs.
My first takeaway message: Patients need to learn as much as they can, as fast as they can, in order to make informed therapy choices.
I talked about needing national oral chemotherapy parity legislation. And I stressed that sometimes the data that’s used to gain FDA approval for these drugs can be a bit misleading. That they don’t work as well for most patients that have relapsed more than once or twice. That overcoming drug resistance was the key to helping late stage patients like so many of us live significantly longer.
To his credit, Mr. Winslow patiently listened to what I had to say. He even asked a number of thoughtful questions about the role that patient advocates play in the myeloma community.
That’s why I was so pleased when my good friend and the queen of patient advocates, myeloma survivor, Jenny Ahlstrom, was included in the article.
It would have been easy for Mr. Winslow to take the easy route and make the article all about the Multiple Myeloma Research Foundation (MMRF), when less well known heroes like Jenny are accomplishing so much online through her MyelomaCrowd.org site, and her CrowdCare Foundation support of underfunded clinical trials. Did you know that CrowdCare has raised almost $170,000 in a less than a year? Jenny will be presenting each of two T cell based clinical trial teams $80,000 checks next week. Without this funding these trials would still be stalled on the runway.
Here’s what Mr. Winslow wrote about Jenny’s important work:
Jenny Ahlstrom, a mother of six in Salt Lake City, hopes medical advances will continue against multiple myeloma. The 48-year-old founder of advocacy group myelomacrowd.org was diagnosed with the disease in 2010. She underwent so-called tandem stem-cell transplants—two procedures within a few months of each other that proponents say is associated with a durable remission.
She is free of the disease and not taking any medication for it. But she says she is on the lookout for the next potential treatment. “I don’t want just 10 more years,” she says. “I have an 8-year-old. I want to be around for my kids.”
Here’s a link to Monday’s article:
I’ve emailed Ron Winslow, reminding him that there are a number of other interesting and important myeloma story lines; I’m hoping he decides to do one or more follow up articles that delve a bit deeper into the challenges faced by myeloma specialists, patients and caregivers.
I never set out to become an activist. But I see the difference people like Jenny can make, and it inspires me. I want to help anyway I can.
It’s a lot easier to do now that I’m starting to feel better. The water retention in my legs and feet is improving every day. My GI tract seems to be heading in the right direction, too.
Now if 21st Century Oncology and Cigna can get their insurance mix up straightened out. It’s already cost me a week of induction therapy. We’ll try again next Monday.
Feel good and keep smiling! Pat