T.J. continues the fight up on The Hill
Melanoma has opened some really great doors - getting to meet Utley and Rollins, mingling with Wall Street elite, throwing out the first pitch at a Marlins game, appearing on TV in Australia, meeting three different billionaires, hanging with Mike McCready, more photo shoots than I can count (Jen's favorite)... the list is pretty extensive, and I never lost sight of how fortunate I was that those things were gifted to me. Combine that with some of the advocate work, including the Milken Family Foundation video, and it's safe to say something pretty remarkable has come of a dire diagnosis.
On Monday, "cool life experiences" met with "advocacy work" when I participated in a Congressional lunch briefing on immunotherapy. The Melanoma Research Alliance (MRA) and Society for the Immunotherapy of Cancer (SITC) hosted a session that gave an overview of strides being made in immunotherapy, and they asked me to come along to provide a patient story among all the medical talk.
It didn't take me too long to say "yes" to this one, even though I had sworn off travel for the next few months. Not many people get to tell their story like I have; very few get to do so in a conference room of 50 or so Congressional staffers. There weren't any actual members of the House or Senate there; but of course, as I continue to tell this story, it will be said that I was "testifying before Congress", evoking images of CSPAN and Ollie North.
My fellow presenters were all doctors; I suppose I was the Vanna White of the group, the (cough) pretty face of immunotherapy success. Dr. Howard Kaufman of Rutgers University (and the head of the SITC) gave an excellent presentation, in easily-understood terms, on how immunotherapies function. He also showed, very effectively, how survival curves show these treatments are pushing life expectancy out significantly, emphasizing that melanoma patients who make it two years on some new immunotherapies are, for the most part, not dying of melanoma.
All I had to do was follow up Dr. Kaufman's presentation and Dr. James Gulley's introductory keynote with some real-life examples; luckily, I have plenty of first-hand knowledge and experiences to pull from. With this audience, it was essential to have a survivor story that sticks in peoples' minds (especially with Congress out of session until 2015). Enter Vanna and his vitiligo-patched head.
It is still hard to believe what I write and say affects people, let alone those with legislative capabilities. After the hiccups at the Wings of Hope gala, I jotted down a few notes on the iPad but didn't even use it. Telling my story has occasionally become a bit rote, and includes the same talking points and narrative highlights - "two clinical trials, four treatments, five surgeries!!" or "that first doctor said I would be lucky to be here in two years" – mostly because they are, well, effective (one friend told me I was a pharmaceutical company's marketing dream).
Monday, I was able to not just tell my little tale, but directly tie my story to points that each doctor was making. "Remember that survival curve flattening out at 24 months? That's just about where I am, and likely wouldn't have made it this far without these cutting-edge treatments."
"That slide listing immunotherapies - I have done four of them. The slide where it shows the efficacy of drug combinations? I sort of did that, too, between the two trials."
"When Dr. Gulley spoke about the reduced toxicity, this is what he meant – I am here talking to you 96 hours and 1,000 miles removed from my 31st treatment, and I don't look like the typical 'cancer patient' you're used to seeing."
A staffer told me afterwards that they often remember the stories more than the science from these talks. If that is the case, then I think (and hope) I did my part in representing the melanoma patient community. At the beginning of the session, Dr. Gulley gave the normal stats on melanoma survival, including the "one person dies every hour" part, emphasized quite well by pointing out, "During this lunch today, someone in the U.S. will die of melanoma." I hope I represented that person well.
Afterwards, my buddy Dennis, who works in the House, gave me an insider tour of the place (betcha didn't know they planned to put George Washington in a crypt in the lower levels, or the House floor still has bullet holes from an attack by Puerto Rican nationalists decades ago!) Passing through the labyrinth of halls and meeting rooms, the enormity of what occurs under that dome sank in a bit. Those walls house the foundation of our country's democracy, and even if they've been a little "less productive" recently, the history and sheer importance of the place is pretty amazing. Giving a microscopically-important session seems less than even footnote-worthy in the grand picture, but if my story and the education provide by Dr. Gulley, Dr. Kaufman, and Dr. Jennifer Gansert of Amgen sticks in someone's head, maybe that number will turn into one patient per afternoon, or per day.
In true T.J. fashion, the day turned into a packed 48 hours spanning three plane rides, two states (plus D.C.), and one Amtrak trip from Philly to Washington. I woke up the morning of a Congressional briefing on a recliner at my buddy's South Philly place, and ended it (in a bed, at least) at another friend's Northern VA home. I've tried to make my interactions with friends a little less crazy, but there wasn't really a way to fit in everyone this trip, so a handful of friends from a few walks of life all met up for happy hour outside DC Monday evening. The consensus was that few people ever thought I would be in House of Representatives, unless I was under indictment!
Thanks to Amgen for sponsoring this briefing and to the MRA and SITC for giving me another chance to make a difference in someone's life. Let's hope our efforts are going to fall on the right people to continue the fight up on The Hill – not between parties, but against cancer.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »