Jack & me
I felt pretty terrible last December when I had to tell a nice woman like Jan Whelan that PVI could not consider her nomination of her husband, Jack Whelan, for the Patient Voice Impact Award (he was already a PVI advisor; that ruled him out). But her description of him was sure spot-on: “…an extraordinary patient advocate who is helping bridge the well-known communications gap between patients, physicians, policy makers, pharmaceutical companies and others in life sciences. He’s currently in twice-weekly chemo treatment for a rare incurable blood cancer…” Today, Jack has new and urgent reasons to scour the earth for a cancer cure. And if any one person can carry the ball of personalized medicine further down the field, Jack’s a great bet. As I learned from interviewing him for July’s Disruptive Women in Healthcare Man of the Month, his “in it to win it” attitude goes back to when he was a kid.
Jack has outlived the five-year prognosis for the blood cancer diagnosis by three years, by betting on forward-looking science and choosing to participate in more than half a dozen clinical trials.
But last March, Jack received a new and formidable diagnosis: metastatic prostate cancer.
We arrange to meet at a conference in Providence. We share a big hug and settle down to catch up. Jack looks great. Despite the new diagnosis that must weigh heavy on his mind and body, Jack seems fit, energetic and defiantly youthful at 67. He laughs that the new chemotherapy regimen that was “sure” to take his thick head of hair by now, has so far spared it. Though he shifts in his seat quite often to ease the pain in his cancer-riddled spine, he’s no less determined that the cancer now eating at his bones, organs and lymph nodes is conquerable.
How are you? I ask. “Doing OK. Checking research and treatments all over the world. But…” he shakes his head, “I’ve been on buckets of chemo in the last eight years. This time it’s tough.” On the Gleason scale of 1-10 that predicts the aggressiveness of prostate cancer, Jack is a 10. “In the diagnostic scan, my body lit up like a Christmas tree”.
We talk about how this disease has been able to progress undetected in Jack’s body to this point, despite his being in the close care of a world-class medical team. It’s apparently a lesson in the shortcomings of our healthcare system (including the fact that a $40 PSA test for prostate cancer is no longer standard; the cost saving measure was part of the Affordable Care Act.) But to whatever extent the system may have let him down, any anger he feels is because others will continue to fall into the same gap. He spends little energy bemoaning the facts, however. In typical fashion, after a brief time adjusting to this new, harsh reality, Jack and his family, “Team Whelan”, dive into research and finding solutions.
“Team Whelan”
“Some people think that clinical trials are a last resort,” he says. “But I am a big proponent of clinical trials that involve targeted molecular-level therapies. The move toward personalized medicine—which is really finding the right drug for your particular disease—is incredible.”
Also incredible is the time and energy Jack continues to devote to this mission, evident by a glance at his Facebook page. Some posts from the last couple of days:
“Vice President Biden discussing Moonshot, we’re involved in this. Tune in now.”
“Join me at @Cancerbase – creating a global, real-time map of cancer to give patients meaningful data about our cancer.”
“@JackWhelan great kickoff to @RareAdvocates northeast conference! #raredisease#advocacyhttps://t.co/v8zNb8Soqx”
Jack spends many hours counseling and supporting other patients, and working with industry leaders. We’ve talked on the phone many times, and met up recently at an event in Boston held by ERT, a clinical trials software firm working with Jack on re-designing clinical trials. The plan is to focus on how trials can have greater and more immediate benefit to the patient.
This is perhaps Jack’s biggest potential sphere of influence. In a world where patients are expected to “comply and adhere” to their treatment protocol, a patient is also expected to stick to a clinical trial for the duration – not knowing until after the trial is concluded whether the treatment was a placebo, or if any debilitating side effects were simply the price for quantifiable benefit. “This is precious time for a patient. We can’t afford to wait.”
That’s why, in the seven clinical trials in which he’s taken part, Jack’s approach has been to “stick with it” until he’s convinced it’s working for him — or not. And if not, he’s out of there, and on to find the next opportunity. Though this approach can frustrate the researchers because “opting out” wreaks havoc with their data, Jack is unapologetic. “It’s my life. It’s your life. We need trials that are designed to learn more quickly and efficiently. Re-designing them ultimately will be better for patients, developers, researchers – the entire industry.”
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Jack grew up in a small town north of Boston, the third of four kids, son of an engineer and a homemaker. He graduated from the University of Rhode Island, had a four-year stint in the US Navy, and married Jan while still at URI. He gushes unabashedly about his family: being married to his best friend, having three tremendous daughters, three great sons-in-law, and six of the cutest grandkids on the planet – all under age five (including two sets of twins.) Right around the time of his first cancer diagnosis, he chose to retire from a successful career as a research analyst, where he specialized in information technologies for large investment firms. He sold that company; but even in the midst of his challenges, has recently formed another company to advance the new breed of clinical trials he describes. With many question marks in his personal future, Jack’s already made plans to ensure other capable hands will run this work to the finish line.
Seems Jack has a longstanding trait of focusing on the finish line – and getting there. “When I was 9 or 10 years old, we were making go-carts for a derby. The other kids spent weeks building their cars– painting fancy designs, tuna fish cans for headlights, the works. But all I wanted to do was win! I put high-speed wheels on an axle, added a plank of plywood, and jumped on.” Did you win? I ask. “Yeah, by quite a bit. But stopping the cart was hard, ‘cause I had no brakes.”
That’s Jack’s way, I’m thinking. Whether racing down a hill on a boyhood lark, or racing against time to beat the cancers trying to stop him: no distractions, no crowd-following, and no brakes. Play to win.
We’re cheering you on, Jack.
