The Day We Stormed Capitol Hill

I can't believe it's taken so long for me to recap our incredible trip to DC, but that's life in the big (and busy) city!

For those of you who are thinking "What incredible trip to DC??", here's some background: I do advocacy work with the Lung Cancer Alliance, and what they do best is legislative advocacy. They work tirelessly to try and get more federal research dollars allocated towards lung cancer research. Currently, federal research funds are disproportionately directed at OTHER cancers and not lung cancer, the biggest cancer killer.

LCA invited me and my mom's sisters to travel to Washington DC in order to meet with our Congresspeople in person. Our aim was to try and convince them of the INCREDIBLE importance of co-signing onto the Lung Cancer Mortality Reduction Act, a bill that asks Congress to work together with other governmental agencies to come up with a plan - SOME kind of plan - to address lung cancer's dreadfully low survival rates - which have been stuck at less than 16% for over 40 years.

My aunts and I were part of the Massachusetts contingent,eight advocates strong who were all fired up to march up to Capitol Hill and talk turkey with our members of congress. Or something like that.

Day one, we attended a training session for those of us who'd never done this kind of face-to-face meeting before. It was led by the dynamic, compassionate and incredibly articulate Laurie Fenton, the President and CEO of Lung Cancer Alliance.

Laurie spoke to about 50 advocates assembled from states across the country, including California, Connecticut, Kentucky, North Carolina, Georgia and Washington. We heard from lung cancer survivors as young as 23 and as old as 73. We heard emotional stories from family members like me who came because they lost someone and feel like they have to do something.

That night, we got a special treat. We attended an ice skating show called Kaleidoscope at the Verizon Arena, a celebration of skating and cancer survivorship. The headliners included cancer survivors Scott Hamilton and Dorothy Hamil, as well as Olivia Newton-John.

It was thrilling for The Lung Cancer Alliance to be included among so many fantastic advocacy groups, all working to raise awareness of the different cancers. The show will be broadcast tomorrow - on Thanksgiving Day - at around 4pm on FOX- after the football game.

Day two was "showtime." We got dressed in our best Capitol Hill outfits, powered up with the free breakfast at the Embassy Suites, and met with our fellow advocates to come up with a game plan.

Since there were eight of us, we broke into two "teams" in order to make our way through the list of Representatives and Senators from Massachusetts. My team only had one actual appointment - that was with my Aunt Susan's Rep, Niki Tsongas. The rest we were just planning to ambush. Well, to call upon, unannounced.

We weren't sure what to expect. We'd been told that it was unlikely that we'd actually meet with any of the Congresspeople themselves - and we'd be lucky if their aides would even agree to see us without an appointment. Undeterred, we went ahead anyway. We thought, "We've come all the way here - it's worth a shot!"

Our first stop was actually to a Connecticut Rep because our friend Kevin Brummett was from Connecticut. Kevin lost his battle with lung cancer this spring and his widow Stephanie was with us. She wanted to pay Kevin's Congressman a visit. He wasn't in, but she left a personal note and we felt good about touching base there.

As we left the CT office, my Aunt Susan noticed offices for a South Carolina Congressman. She owns a condo down there, so we popped in to say hello. He wasn't in, but we left info and moved on.

Door number three was Representative McGovern, who covers areas including Worcester and Hopkinton. We had a connection to one of his constituents in Holliston and miraculously enough, McGovern was in his office and agreed to see us.

We had only gotten a few sentences into our "pitch" when he said "Count me in. I'll sign it." We were floored. Stephanie walked right up to his desk and thanked him,tearfully, sharing her story about how her 31-year old never-smoking husband lost his battle with lung cancer. He seemed genuinely moved - and sure enough, the next day, he signed on!

Next was Congressman Lynch, who represents South Boston, among other towns. He wasn't in, but his aide was, and she agreed to hear our stories. She shared with us that she'd lost her grandmother to lung cancer. This is what happens so often when you start talking about lung cancer. Lung cancer touches so many people, you're bound to meet someone who's been affected. This obviously wouldn't sway Rep. Lynch's decision, but it helps us talk to his aide when she has a personal connection. She gets it, even without us telling our stories. Of course we did anyway and shared with her all of the shocking statistics - and when we left the office, she promised to share our information with the Congressman and encourage him to consider co-signing legislation.

After that was MY Rep, Michael Capuano who represents most of Boston including my district in Charlestown. We knew he wouldn't be in because he's currently running for Ted Kennedy's seat in the US Senate and the election is just weeks away. We'd tried to get an appointment with him beforehand since two of us are constituents, but no luck. So, we showed up anyway. His very nice aide Jared chatted with us for a while, and then we got a chance to meet with his legislative aide who was very sympathetic and compassionate. I've since emailed the Congressman, so I hope we'll have his support!

Next it was time for a coffee break! We headed to the cafeteria in the basement which was actually kind of exciting. Congressmen and women have to eat, right? We weren't sure who we'd see, and we didn't really see anyone we knew, but it was nice to take a break and power up with some coffee and cookies.

Niki Tsongas was our next stop. We had an appointment with her health aide, and we'd heard that Niki herself might make an appearance. Her health aide was wonderful. Not only did she listen compassionately, she asked a lot of questions - great questions - which made us realize that she was seriously considering this bill.

She seemed shocked at the statistics and deeply moved by our plea. We were deep in discussion, when in walked Congresswoman Tsongas. She was very gracious and also listened intently to our stories, the statistics and the explanation of the bill.

She shared that she had actually lost her mother to lung cancer, which we hadn't known until then. Before we left, she said that the bill sounded like something she would sign, but that her team just had to review it first. Our fingers are crossed.

Feeling empowered, we went onto our next unscheduled stop - Congressman Olver, who represents the western part of the state. We met with his health aide and told her about Sara Monopoli, the sister of one of Congressman Olver's constituents. Sara lost her life at 34 to the disease - just 9 months after giving birth to her only child. His aide was incredibly compassionate and shared that she, too, had lost several members of her family to lung cancer. She said "I can't see why he wouldn't sign this bill"- and the next day, he had signed it!

On a roll, we headed down to Congressman Delahunt's office. He represents the Cape and the South Shore. I've heard he's a nice guy - and his aides were very sweet - but they were firm that without an appointment, we couldn't talk to anyone. This was the first and only time that we ran into this kind of stumbling block, so it didn't really faze us. We figured we'd talked to enough people in one day! We left our info and moved on.

We left Capitol Hill feeling elated. It was such an invigorating feeling to know that we'd spoken with people who can actually affect change. As Laurie Fenton had told us, this was "pick and shovel work" - asking Congresspeople to co-sign onto a bill, one member at a time, just for the hope that we can get it to the next step.

Pick and shovel work. Not totally glamorous. Nothing that happens overnight. But necessary work. Important work. Inspiring and invigorating work.

One legislator at a time, we'll get through to them until we've got everyone from Massachusetts - and with the work of LCA, hopefully we'll get most of the US Congress to sign on. Then, hopefully it will get it into hearings - and eventually passed as a bill so that we can finally start to see a difference in those devastating mortality rates.

Before our trip, only one Congressman from Massachusetts had signed on: Barney Frank.

After our trip, this is where we stand today: One senator from Massachusetts (Kirk) and five Congressmen (Neal, Olver, McGovern, Tierney and Frank) have all signed on.

We're still working on Capuano, Delahunt, Tsongas, Markey and Lynch. How amazing would it be if Massachusetts was the first state in the union to have all of its congresspeople sign on? It would certainly show that this state cares about lung cancer. Being one of the regions with the most exciting and innovative lung cancer research, it would make a lot of sense.

Congressmen and women, are you reading? Could you sign on?

Even if you're not a Congressperson - but you'd like to see them sign on - you can do some "pick and shovel" work yourself. Go to this site and you'll learn how to find out the email address of your Congressperson and how you can email your representative. If your rep is one of the people who co-signed, please email them to say thank you. If your rep hasn't yet signed - email him or her and tell him why it's so important to get their support. It's so crucial that our members of Congress hear from us. They listen to their constituents, so please send them a note!

And if you're not from Massachusetts, you can use that link to contact your member of Congress too.

Together, we can make a difference.

We Can't Forget The Ones We Lose

I went to an American Lung Association event last night called "An Evening in Paris" that really blew me away - in a good way. Because of the American Lung Association's history of ignoring lung cancer, I wasn't expecting to be so moved - but I was - particularly by one of the honorees.

The event was a fundraiser, but also an opportunity to honor scientists and doctors for their groundbreaking lung cancer research. As we all know, the only way that we are going to reduce the staggering mortality rates from lung cancer is from new research.

One of the doctors honored was a female cardio-thoracic surgeon from Brigham & Women's hospital - one of the few women in the world with that particular job; another was a researcher who's working on a way to determine whether or not suspicious nodules caught on CT scans are cancerous or not - which would help to further an early detection protocol.

Those researchers were inspiring, but the person who moved me the most was the doctor honored for her work with palliative care and lung cancer. Her name is Dr. Jennifer Temel, and she's one of the doctors on the front lines, dealing with real patients who die every day. I've met her several times before - the first time was two years ago when she was covering the weekend shift, filling in for my mom's doctor at MGH. She stopped in while she was "on call" and we learned that she's also my mom's neighbor's lung cancer doctor. This disease touches many, near and far.

Dr. Temel reminded us all that while we ARE making advances, the reality is that over 150,000 Americans will still die this year from lung cancer. We cannot forget the vast majority of patients for whom there is no cure and their families who are left behind to mourn.

Even at MGH, where Dr. Temel works and where they test every tumor for genetic mutations, the reality is that only a handful of people will be eligible for the latest personalized medicines based on those genetic tests. As much as she and her colleagues want new treatments to be available for everyone right now - the reality is that they aren't - and they won't be - for a while.

Palliative care is always a difficult topic to address, and it was brave of her to bring it up in a room that was all about research, hope and fundraising for a cure, but what she said is that we still need to work on helping people at the end stage of their disease. We need to help people when they die.

Sadly, the majority of lung cancer patients are diagnosed at a late stage, and for them, death is an inevitable part of their journey. As such, they should be able to leave this earth with as much dignity and as little suffering as possible.

My mom was one of those patients. Tumor testing wasn't available when my mother was at MGH and even if it had been, as a former smoker and with squamous cell NSCLC, there weren't (and still aren't) a lot of options open to patients like her. The only option for her at the time (and at one of the best hospitals in the world) was platinum-based chemotherapy - and in her case, even that wasn't an option because she got so sick so fast. My mom's case was unusually aggressive, but what wasn't (and still isn't) unusual about her case is that she was treated palliatively instead of curatively. In late stage lung cancer, all that can sometimes be done is palliative care because there simply aren't enough treatments for late stage lung cancer. Until those treatments are available, we have to treat every patient - including the ones who are going to die.

So I am so grateful to Dr. Temel and to all of the other thoracic oncologists who deal with real patients every day - real patients who die because those other options aren't available for everyone yet. I thank them for continuing to come to work every day no matter what and for continuing to do research when they're not doing their clinical work. I thank them for continuing to solider on, even when they must get discouraged in the face of so much death and tragedy.

If we all work together, someday there will be less palliative care and more curative care for lung cancer. We're not there yet - so we can't forget the ones who are left behind in the wake of all of the exciting research that we celebrate. We can't forget the ones who won't see a benefit from the research in their lifetime.

I am so glad that doctors like Dr. Temel are not forgetting those who are left behind. I am forever grateful.

Shine a Light on Lung Cancer - Boston '09

Just thought I’d share about our event in Boston last week. It was incredible!

Over 400 people packed into the Prudential Center in Boston to honor loved ones and learn about lung cancer.

Five of Boston's major cancer centers were represented, all at tables lined up next to each other including Dana Farber, Mass General Hospital, Beth Israel, Brigham & Women and Boston Medical Center.

Several lung cancer advocacy groups were at tables as well including the National Lung CancerPartnership, Lungevity, Uniting Against Lung Cancer and Upstaging Lung Cancer.

It was so phenomenal to see all of these hospitals and advocacy groups standing side by side, offering the community so much hope about lung cancer advocacy and research.

Our local ABC news anchor, Heather Unruh, whose mother is a lung cancer survivor, was an eloquent emcee, setting a tone of hope for the evening.

Our Senate President, Terese Murray, pledged to support lung cancer research and shared her personal connection with lung cancer – her best friend was diagnosed a year ago. She then read the state proclamation declaring November Lung Cancer Awareness Month.

People who were just walking by stopped to hear the speakers because they had been affected by lung cancer. One woman had lost her mother the day before the vigil, but she saw one of our signs and decided she had to come.

We had 6 speakers who shared their personal stories including Linnea Duff, a never-smoker diagnosed in her early 40’s at a late stage and who is currently 18 months into a clinical trial at MGH for her ALK-4 mutation and doing incredibly well;

Other speakers included Deidre Malloy, a 7 year, Stage IIIB NSCLC survivor, Rich Monopoli, who lost his wife Sara Thomas Monopoli less than two years ago when she was only 35 and had just given birth to their only child; Stephanie Fellingham Brumett, the wife of Kevin Brumett who was an incredible advocate and spoke out whenever he could until he succumbed to his disease last May at the age of 31.

And finally, Diane Legg, the Co-chair of Lung Cancer Alliance-Massachusetts shared her story of survival and hope as a 5-year lung cancer survivor and mother to 3 young boys.

We read out loud the names of 400 lung cancer survivors as well as those we lost to this disease, like my mother.

There were many tears shed - but also so much hope in the room as we heard from some of Boston's top doctors speak of the incredible research that's being done to help find personalized treatments for lung cancer.

It was a phenomenal way to start Lung Cancer Awareness Month in Massachusetts.

Congratulations to everyone who is doing something fabulous for lung cancer awareness month, from incredible fundraising to much-needed awareness-building and media exposure. We're not sitting back and letting lung cancer be ignored. We’re all making BIG noise about this disease.

Every little thing we do takes us closer to a cure. We ARE the lung cancer movement - and we're moving!