Hi all,
Once again, it's been awhile. I'll be writing more in the coming weeks to catch you up on what we've been up to these past few months and some things lined up for the next few.
Its always hard for me to sit down an put my thoughts to paper. I think of Andy, the sudden change in all of our lives that cancer caused, often - randomly. And then when I go to write them down, their gone - fleeting, and i have a feeling of emotional deja vu - I've processed this feeling but can't adequately describe it, almost like driving out of a heavy fog into a sun.
In April, I attended LCA's National Advocacy conference in Washington DC. It was truly amazing, to take passion for ending such a horrible disease and applying it to our legislative process. It was also amazing to meet others who get it, understand that driving out of a heavy fog into a blazing sun. Who have been where I am, or have just started the journey with Lung Cancer, either as a survivor, a caregiver, a professional, a family member. All ages, all colors, all religions - truly representative of the diversity in America, and representative of how indiscriminate lung cancer is.
130+ advocates from as far west as Hawaii and far east as NH (representing Andy!) gathered on a Sunday evening for three energetic, frenetic days. On Monday we learned more about Lung Cancer, about the the Lung Cancer Alliance (LCA), dug into recent advances in Lung Cancer, got to know the Lung Cancer Mortality Reduction Act (LCMRA) and received legislative and press training for meeting with members on Congress. On Tuesday, after a restless night, I joined my fellow advocates as we took to the Hill for a series of planned meetings and drop-ins with members of Congress. The group broke into geographical units; I was with the New England chapter, which split into Northern and Southern, as we had so many meetings. Tuesday night we reconvened with the full group, and discussed our days. Wednesday saw us visiting the LCA offices and then we all headed home.
So why were we there? To advocate for the LCMRA, by telling our stories - stories about Andy, about loved ones, about ourselves from survivors. To meet with Congressmen & Congresswomen, House Representatives, and their members of staff. To garner attention for the LCMRA, to request their support.
The LCMRA, is a bicameral bill, introduced by Republicans and Democrats in both Houses; it calls on the Health and Human Services (HHS), Veterans Administration (VA) and Department of Defense (DoD) to coordinate on the development of a comprehensive plan to reduce the mortality by 50% by 2020.
Lung cancer kills more than the next 4 cancers combined. Did you know that when Andy got sick? I didn't have a clue. And very little is being done about it. Its been 40+ years since Congress declared War on Cancer - and the survival rate has risen from 13% to 15%. 2% after billions in research - because very very little of it went to lung cancer.
The LCMRA effectively calls for a three pronged approach - prevention, detection and treatment. The focus to date has been on prevention - think of all of those anti-smoking campaigns we grew up with, and your natural inclination is associate lung cancer with smoking. No doubt, smoking causes cancer. But not all lung cancer is from smoking - smoking doesn't define Lung Cancer.
To date, there's been a single approach to Lung Cancer. Stop smoking, stop the disease. This stigma is wrong. First question I get about Andy, almost every time, is did he smoke?
No. But the more I think about it, does it matter? 80% of Lung Cancer patients either never smoked, or followed the single prong - stop smoking - and got cancer anyway. And even if the patient did smoke, do they deserve to be forgotten?
Do we apply the same stigma to any other disease? No. Closest approximation I can make, and other have to, is to the stigma associated to AIDS patients in the early 80's. Jennifer Windrum, of WTF? Where's the Funding for Lung Cancer, wrote this blog on Lance Armstrong's LiveStrong blog describing the stigma: http://blog.livestrong.org/2011/11/15/monster-cookies-stigma-kool-aid-the-deadliest-combo-of-all/
The LCMRA calls for detection through a low dose CT scan for the high risk population; people over 55 who have smoked an average of a pack a day for 30 years. The dose of the scan is less than half that women receive from a mammogram, and the observational NCI trial was halted early, as those who received the CT scan (vs. X-rays) had a 20% lower rate of mortality. Said differently, detect it earlier, and the patient has a much higher chance at survival. More information about the screening can be found here: http://screenforlungcancer.org/
Beyond the holes it leaves in all of us when a patient dies, it has a huge financial impact. Both in ongoing treatment, after the disease is discovered, and then in the loss of the productivity that the patient gave us through their work, their contributions to society.
Speaking of costs, an NCI study published in 2009 assigned the value of life lost to lung cancer to be in excess of $433,000,000,000 a year (!) by 2020, but that just a 4% decline in lung cancer mortality would reduce that amount by more than half.
We're worried about health care costs in the US, rightly so, and here's a way of cutting costs. How much would this screening plan cost? About $0.75 per person across all members of covered under health insurance; current health plans allocate about $3.25 to cover mammograms, and $1.50 to cover PSA tests.
The third prong is the treatment. Strides are being made, scientific discoveries are being made. The pace is slow, because the funding is so low. Its one of the lowest funded cancers in the national budget. And that's where progress is made - with national funding. Increase the research funding, save lives. Not rocket science.
The LCMRA needs more advocacy. We're in the second year of the 113th Congress, which is about to break to go to home districts in mid Summer, and as this this is an election year, we don't expect the Congress to be very busy when the new fiscal year begins 1 October, through the elections.
So what can you do? Contact your Representative, and Senators. It's easy - there's a form online to do this: http://capwiz.com/lungcanceralliance/home/. And if you're up for it, I'd be happy to work with you and the LCA office to have you meet your Congressional members or staff - they work for us after all.
The full Senate bill (S.752) is available here: http://www.lungcanceralliance.org/get-involved/lung-cancer-advocacy/lung-cancer-mortality-reduction-act/senate-bill-s752.pdf. It's interesting to read and provides a lot more detail than I have.
I've talked for a while about advocacy and legislation and I hope your still reading :). The other big news since the last posting was the birth of my son, Ian Andrew Swan. What an amazing journey this has already been. Right after he was born Ann and I looked at each other in amazement, and I cried, for happiness in having him here, and sadness in not knowing this joy with Andy. I'm tearing up now writing this.
Andy was and will always be in some way, an amazing father to Nicholas. I feel his loss for Nicholas, I try to see him as often as I can. I wish Andy was here with me so I could tell him I finally get what he was trying to tell me when his son was born. I could see his love for Nicholas but couldn't fully comprehend the love for a child until Ian was born. I get it Andy.
I am also so proud of my family, the way that Jen and Nicholas and my parents have formed a new family unit; it's not easy of course but its great to see and be part of. Andy would be proud. And I am proud of my Dad, I love seeing him with Nicholas knowing that he raised Andy and I as our dad, and now, in the cruelest of fates, he is again serving as a father figure, to his own son's son, even as he fights his own battle with cancer.
Father's day brings mixed feelings for me. I love my family, my wife, son and step daughter, I love my role in the family we've formed, of seeing the joy that Ian brings to Maggie Ann and I. And yet I find as Father's day approaches that I am missing Andy and wishing Nicholas could have that time with Andy. I see Andy in Nicholas every time I am with him, its truly great seeing Nicholas interact with his little cousin who Nicholas told me "has the same middle name as me, after my Dad".
This father's day weekend, I am heading to Philadelphia to represent our family, and Andy, at a fundraiser that a college friend of Andy's is throwing in his memory. Sarah Evans-Brockett, who was on the Team Lung Love Marathon team last year with her husband Jeff, Andy's college roommate, is hosting The Silver Screen for Lung Cancer this Saturday night: http://thesilverscreenforlungcancer.weebly.com/index.html. This cocktail party and auction will benefit Team Lung Love and LCA; it also promises to be an awesome event, through all of the donated auction items that Sarah has garnered.
To all my Philly friends - if you're up for it, come out to Collegeville, I would love to see you. And if you can't make it but still want to help - buy a ticket online ($25) and I'll match your donations dollar for dollar.
Believe it or not... I have more to tell you about our experiences advocating on the Hill. But its late and I need to sleep, to be ready for the road trip to Philly tomorrow.
Stay safe and be well, and Happy Fathers day to all -
Tim
Once again, it's been awhile. I'll be writing more in the coming weeks to catch you up on what we've been up to these past few months and some things lined up for the next few.
Its always hard for me to sit down an put my thoughts to paper. I think of Andy, the sudden change in all of our lives that cancer caused, often - randomly. And then when I go to write them down, their gone - fleeting, and i have a feeling of emotional deja vu - I've processed this feeling but can't adequately describe it, almost like driving out of a heavy fog into a sun.
In April, I attended LCA's National Advocacy conference in Washington DC. It was truly amazing, to take passion for ending such a horrible disease and applying it to our legislative process. It was also amazing to meet others who get it, understand that driving out of a heavy fog into a blazing sun. Who have been where I am, or have just started the journey with Lung Cancer, either as a survivor, a caregiver, a professional, a family member. All ages, all colors, all religions - truly representative of the diversity in America, and representative of how indiscriminate lung cancer is.
130+ advocates from as far west as Hawaii and far east as NH (representing Andy!) gathered on a Sunday evening for three energetic, frenetic days. On Monday we learned more about Lung Cancer, about the the Lung Cancer Alliance (LCA), dug into recent advances in Lung Cancer, got to know the Lung Cancer Mortality Reduction Act (LCMRA) and received legislative and press training for meeting with members on Congress. On Tuesday, after a restless night, I joined my fellow advocates as we took to the Hill for a series of planned meetings and drop-ins with members of Congress. The group broke into geographical units; I was with the New England chapter, which split into Northern and Southern, as we had so many meetings. Tuesday night we reconvened with the full group, and discussed our days. Wednesday saw us visiting the LCA offices and then we all headed home.
So why were we there? To advocate for the LCMRA, by telling our stories - stories about Andy, about loved ones, about ourselves from survivors. To meet with Congressmen & Congresswomen, House Representatives, and their members of staff. To garner attention for the LCMRA, to request their support.
The LCMRA, is a bicameral bill, introduced by Republicans and Democrats in both Houses; it calls on the Health and Human Services (HHS), Veterans Administration (VA) and Department of Defense (DoD) to coordinate on the development of a comprehensive plan to reduce the mortality by 50% by 2020.
Lung cancer kills more than the next 4 cancers combined. Did you know that when Andy got sick? I didn't have a clue. And very little is being done about it. Its been 40+ years since Congress declared War on Cancer - and the survival rate has risen from 13% to 15%. 2% after billions in research - because very very little of it went to lung cancer.
The LCMRA effectively calls for a three pronged approach - prevention, detection and treatment. The focus to date has been on prevention - think of all of those anti-smoking campaigns we grew up with, and your natural inclination is associate lung cancer with smoking. No doubt, smoking causes cancer. But not all lung cancer is from smoking - smoking doesn't define Lung Cancer.
To date, there's been a single approach to Lung Cancer. Stop smoking, stop the disease. This stigma is wrong. First question I get about Andy, almost every time, is did he smoke?
No. But the more I think about it, does it matter? 80% of Lung Cancer patients either never smoked, or followed the single prong - stop smoking - and got cancer anyway. And even if the patient did smoke, do they deserve to be forgotten?
Do we apply the same stigma to any other disease? No. Closest approximation I can make, and other have to, is to the stigma associated to AIDS patients in the early 80's. Jennifer Windrum, of WTF? Where's the Funding for Lung Cancer, wrote this blog on Lance Armstrong's LiveStrong blog describing the stigma: http://blog.livestrong.org/2011/11/15/monster-cookies-stigma-kool-aid-the-deadliest-combo-of-all/
The LCMRA calls for detection through a low dose CT scan for the high risk population; people over 55 who have smoked an average of a pack a day for 30 years. The dose of the scan is less than half that women receive from a mammogram, and the observational NCI trial was halted early, as those who received the CT scan (vs. X-rays) had a 20% lower rate of mortality. Said differently, detect it earlier, and the patient has a much higher chance at survival. More information about the screening can be found here: http://screenforlungcancer.org/
Beyond the holes it leaves in all of us when a patient dies, it has a huge financial impact. Both in ongoing treatment, after the disease is discovered, and then in the loss of the productivity that the patient gave us through their work, their contributions to society.
Speaking of costs, an NCI study published in 2009 assigned the value of life lost to lung cancer to be in excess of $433,000,000,000 a year (!) by 2020, but that just a 4% decline in lung cancer mortality would reduce that amount by more than half.
We're worried about health care costs in the US, rightly so, and here's a way of cutting costs. How much would this screening plan cost? About $0.75 per person across all members of covered under health insurance; current health plans allocate about $3.25 to cover mammograms, and $1.50 to cover PSA tests.
The third prong is the treatment. Strides are being made, scientific discoveries are being made. The pace is slow, because the funding is so low. Its one of the lowest funded cancers in the national budget. And that's where progress is made - with national funding. Increase the research funding, save lives. Not rocket science.
The LCMRA needs more advocacy. We're in the second year of the 113th Congress, which is about to break to go to home districts in mid Summer, and as this this is an election year, we don't expect the Congress to be very busy when the new fiscal year begins 1 October, through the elections.
So what can you do? Contact your Representative, and Senators. It's easy - there's a form online to do this: http://capwiz.com/lungcanceralliance/home/. And if you're up for it, I'd be happy to work with you and the LCA office to have you meet your Congressional members or staff - they work for us after all.
The full Senate bill (S.752) is available here: http://www.lungcanceralliance.org/get-involved/lung-cancer-advocacy/lung-cancer-mortality-reduction-act/senate-bill-s752.pdf. It's interesting to read and provides a lot more detail than I have.
I've talked for a while about advocacy and legislation and I hope your still reading :). The other big news since the last posting was the birth of my son, Ian Andrew Swan. What an amazing journey this has already been. Right after he was born Ann and I looked at each other in amazement, and I cried, for happiness in having him here, and sadness in not knowing this joy with Andy. I'm tearing up now writing this.
Andy was and will always be in some way, an amazing father to Nicholas. I feel his loss for Nicholas, I try to see him as often as I can. I wish Andy was here with me so I could tell him I finally get what he was trying to tell me when his son was born. I could see his love for Nicholas but couldn't fully comprehend the love for a child until Ian was born. I get it Andy.
I am also so proud of my family, the way that Jen and Nicholas and my parents have formed a new family unit; it's not easy of course but its great to see and be part of. Andy would be proud. And I am proud of my Dad, I love seeing him with Nicholas knowing that he raised Andy and I as our dad, and now, in the cruelest of fates, he is again serving as a father figure, to his own son's son, even as he fights his own battle with cancer.
Father's day brings mixed feelings for me. I love my family, my wife, son and step daughter, I love my role in the family we've formed, of seeing the joy that Ian brings to Maggie Ann and I. And yet I find as Father's day approaches that I am missing Andy and wishing Nicholas could have that time with Andy. I see Andy in Nicholas every time I am with him, its truly great seeing Nicholas interact with his little cousin who Nicholas told me "has the same middle name as me, after my Dad".
This father's day weekend, I am heading to Philadelphia to represent our family, and Andy, at a fundraiser that a college friend of Andy's is throwing in his memory. Sarah Evans-Brockett, who was on the Team Lung Love Marathon team last year with her husband Jeff, Andy's college roommate, is hosting The Silver Screen for Lung Cancer this Saturday night: http://thesilverscreenforlungcancer.weebly.com/index.html. This cocktail party and auction will benefit Team Lung Love and LCA; it also promises to be an awesome event, through all of the donated auction items that Sarah has garnered.
To all my Philly friends - if you're up for it, come out to Collegeville, I would love to see you. And if you can't make it but still want to help - buy a ticket online ($25) and I'll match your donations dollar for dollar.
Believe it or not... I have more to tell you about our experiences advocating on the Hill. But its late and I need to sleep, to be ready for the road trip to Philly tomorrow.
Stay safe and be well, and Happy Fathers day to all -
Tim
