The early summer was unusual here in your nation's capital. A cool and very rainy Spring, which made even the gardens of those with not-very-green thumbs, like me, colorful and vibrant. June and July were cool dry, lacking the swampiness that is among the lasting memories for the numerous tourists in town for summer vacation. For the few DC residents who haven't fled to beach or mountains, the joys of cool mornings, warm, dry evenings, fewer cars on the road and easy access to restaurants, lead one to dream...can Congress actually pass health care reform?
We were woken from this dream, thrown out of our hammocks and brought back to reality when August arrived. 90's and humid, every day. And...Congress fails to finish work on health care reform bills and leaves for the month-long "district work period."
Health care is an easy issue to demagogue - remember those "Harry and Louise" ads opposing President Clinton's health care reform efforts (btw - Harry and Louise are back on, in FAVOR of health reform). And of course, the ranting about "socialized medicine," and "European-style health care." Polls suggest that many Americans are concerned about the state of the health care system, but all this propaganda is aimed at scaring the public into supporting the status quo.
I believe that the Administration has done a weak job of communicating with the public, especially those who HAVE decent health insurance, why they should support change. NBC's Chuck Todd commented about a recent the President's performance at a recent AARP town hall on health care, "Perhaps the biggest thing that stood out to us at President Obama’s AARP town hall yesterday was that the White House appears to be losing the message war on health care. How do we know? Just listen to the questions the AARP callers had. Several of them asked about "rumors,” and they also brought up GOP talking points on "rationing" or the government coming to your house to ask how you want to die (!!!)." (http://firstread.msnbc.msn.com/archive/2009/07/29/2013177.aspx).
My glumness about the sad state of this effort suddenly turned to hope with an opinion piece by Kathleen Sebilius (Health and Human Services Secretary) in the August 4 Washington Post. Among her points, she said, "The current health-care system gives insurance companies all the power. They get to pick and choose who gets a policy. They can deny coverage because of a preexisting condition. They can offer coverage only at exorbitant rates -- or offer coverage so thin that it's no coverage at all. Americans are left to worry about whether they'll get laid off and lose their insurance or wake up from surgery with a $10,000 bill because they didn't read the fine print on their policy." (http://www.washingtonpost.com/wp-dyn/content/article/2009/08/03/AR2009080302223.html) You go Kathleen.
I hope that the President and his team will use August to communicate with Americans about what the real implications are of inaction, how the different proposals in Congress will effect them and that doing nothing is not an option.
It shouldn't be hard to get our attention. He's competing with reruns!
-craig
Tuesday, August 4, 2009
Friday, June 26, 2009
From my notes with Mickey Mouse
I spent the early part of June in lovely Orlando, FL, at the annual meeting of the American Society of Clinical Oncology (ASCO). This is an enormous conference or 30,000 cancer docs and other healthcare providers, advocates, and pharmaceutical industry people from all over the planet. This was my fifth time attending this meeting, and it always seems to take a few weeks to recover.
This year I had the opportunity to be part of a program for advocates, giving us tools and information to be better able to understand the content of scientific sessions and ultimately communicate this information to the communities we represent. Among the sessions was one called, "The Economics of Cancer care: It's Everyone's Problem." Among the key messages of the session were that we spend a lot of money delivering health care that doesn't really improve the health of the population. Why? The primary reason is that our system is set up to pay physicians and other providers NOT to ensure better health for their patients, not to spend time listening to patients concerns, but to deliver treatments.
In childhood cancer, any survivor or family member will tell you that the doctors, nurses, and other professionals that are part of the care team, spend lots of time with the patient. A lot of this time isn't paid for by insurance companies, so hospitals have to provide it at a loss. They see the value in time, in listening, in the value of the patient and family voice. I don't have the data, but I'd make the anecdotal observation that outcomes for kids with cancer are better because of the time spent with the patient, not just the treatments they receive.
I am frequently told that pediatric oncology is viewed as a model for the delivery of cancer care - 70%+ participation of patients in clinical trials, a multi-disciplinary team approach to delivering care, and ultimately great success in improving survival rates for many childhood cancers, DESPITE the fact that there is almost no pharmaceutical company interest in R&D for childhood cancers.
So all this good work in pediatric is happening on the cheap. Think of what we could achieve in improving healthcare and reducing costs if we could fix the payment incentives for all healthcare providers! Let's hope our President and Congress consider the model for childhood cancer as they assemble health reform plans.
This year I had the opportunity to be part of a program for advocates, giving us tools and information to be better able to understand the content of scientific sessions and ultimately communicate this information to the communities we represent. Among the sessions was one called, "The Economics of Cancer care: It's Everyone's Problem." Among the key messages of the session were that we spend a lot of money delivering health care that doesn't really improve the health of the population. Why? The primary reason is that our system is set up to pay physicians and other providers NOT to ensure better health for their patients, not to spend time listening to patients concerns, but to deliver treatments.
In childhood cancer, any survivor or family member will tell you that the doctors, nurses, and other professionals that are part of the care team, spend lots of time with the patient. A lot of this time isn't paid for by insurance companies, so hospitals have to provide it at a loss. They see the value in time, in listening, in the value of the patient and family voice. I don't have the data, but I'd make the anecdotal observation that outcomes for kids with cancer are better because of the time spent with the patient, not just the treatments they receive.
I am frequently told that pediatric oncology is viewed as a model for the delivery of cancer care - 70%+ participation of patients in clinical trials, a multi-disciplinary team approach to delivering care, and ultimately great success in improving survival rates for many childhood cancers, DESPITE the fact that there is almost no pharmaceutical company interest in R&D for childhood cancers.
So all this good work in pediatric is happening on the cheap. Think of what we could achieve in improving healthcare and reducing costs if we could fix the payment incentives for all healthcare providers! Let's hope our President and Congress consider the model for childhood cancer as they assemble health reform plans.
Tuesday, June 9, 2009
CCCA Lobby Day 2009
Join these childhood cancer survivors in advocating for HR2109, the Childhood Cancer Survivorship Research and Quality of Life Act of 2009. Visit our Grassroots Action Center to write to your Congressman today!
Thursday, May 21, 2009
Cookies, cancer and camp
I spent the better part of last week in Gold Creek, Montana, about an hour outside of Missoula. If you've never been to Montana, add it to your bucket list.
My journey to Montana was as a presenter, on the topic of advocacy, at the Young Adult Survivors Conference (YASC) at Camp Mak A Dream. There are lots of cancer camps around the US, but Camp Mak A Dream is unique in presenting this program, which is part recreational, part community-building, and part education.
And when I was first invited, I really didn't want to go.
I already had too much scheduled for May, this would come right after CCCA's lobby day and fundraiser, and board meeting. And, I thought, "you're too old for camp."
But, I got the 7:00am plane and went to Missoula, and was reminded that despite a tough economy impacting CCCA, along with most other non-profits, and tons of other work to do, Camp Mak A Dream is what it's all about - Making a Difference. Had I not gotten on that plane, CCCA would have missed an opportunity to share our knowledge about advocacy and how young adult survivors can engage in the process, and I would have missed the opportunity to meet 19 extraordinary survivors from the US and Canada, along with colleagues from the cancer community and the dedicated staff at Camp.
What's really brilliant about the YASC experience, is how over just a few days, through activities as varied as making paper mache masks, archery, yoga, hikes up the butte, discussions of health insurance, late-effects, survivor guilt (I'll add this one to my Jewish guilt - if you don't know what that is, send me a message and I'll explain), and yes, advocacy, 19 individual survivors bond with each other (and the presenters and staff) and are transformed into a powerful community, and the ability to better advocate for themselves, and the tools and motivation to advocate for each other.
One of my favorite activities was the cookie-baking contest. Divided into three teams (all of us!), we were given a basic recipe and went to work. Each group exhibited fine team work, leadership and the outcome was pretty tasty. What a great model for how we can collaborate to make positive change in the lives of kids, adolescents and young adults with cancer.
So, my advice, get to Montana. They really mean it when they call it big sky country. And if you can't get there, invite some friends over to bake cookies - chocolate chips can change the world!
My journey to Montana was as a presenter, on the topic of advocacy, at the Young Adult Survivors Conference (YASC) at Camp Mak A Dream. There are lots of cancer camps around the US, but Camp Mak A Dream is unique in presenting this program, which is part recreational, part community-building, and part education.
And when I was first invited, I really didn't want to go.
I already had too much scheduled for May, this would come right after CCCA's lobby day and fundraiser, and board meeting. And, I thought, "you're too old for camp."
But, I got the 7:00am plane and went to Missoula, and was reminded that despite a tough economy impacting CCCA, along with most other non-profits, and tons of other work to do, Camp Mak A Dream is what it's all about - Making a Difference. Had I not gotten on that plane, CCCA would have missed an opportunity to share our knowledge about advocacy and how young adult survivors can engage in the process, and I would have missed the opportunity to meet 19 extraordinary survivors from the US and Canada, along with colleagues from the cancer community and the dedicated staff at Camp.
What's really brilliant about the YASC experience, is how over just a few days, through activities as varied as making paper mache masks, archery, yoga, hikes up the butte, discussions of health insurance, late-effects, survivor guilt (I'll add this one to my Jewish guilt - if you don't know what that is, send me a message and I'll explain), and yes, advocacy, 19 individual survivors bond with each other (and the presenters and staff) and are transformed into a powerful community, and the ability to better advocate for themselves, and the tools and motivation to advocate for each other.
One of my favorite activities was the cookie-baking contest. Divided into three teams (all of us!), we were given a basic recipe and went to work. Each group exhibited fine team work, leadership and the outcome was pretty tasty. What a great model for how we can collaborate to make positive change in the lives of kids, adolescents and young adults with cancer.
So, my advice, get to Montana. They really mean it when they call it big sky country. And if you can't get there, invite some friends over to bake cookies - chocolate chips can change the world!
Wednesday, February 4, 2009
T-4 and counting
Four days to go until Rise to Action LA. If you are not familiar with RTA, check out the link I've provided. This is the 6th regional conference for young adult survivors that CCCA has developed, in partnership with hospitals and cancer patient advocacy organizations, and it looks to be the best yet. Registration is exceeding goal, and we have a terrific collaboration with hospitals like Children's Hospital LA and City of Hope, and great partners like USC, WeCan Pediatric Brain Tumor Network, LLS, the Ulman Fund for Young Adults with Cancer and Vital Options. From this response, it's clear to me that survivors and families are hungry for information that empowers them to advocate for their long-term survivorship care, a day that celebrates their survivorship, and builds relationships among survivors and a community interested in making change.
Looking back, what did it take to get here? CCCA's effort in LA began almost 2 1/2 years ago when I met Kathy Riley, a passionate parent of a survivor and advocate at a brain tumor conference in LA. Kathy knew the docs and other staff at CHLA really well and importantly, knew how to get their attention. I made the first of several presentations about RTA to key staff in pediatric oncology. CHLA has tremendous clinical and community programs for survivors, so it wasn't surprising that the initial response to my proposal for a collaboration was...tepid. But Kathy and I didn't give up talking about RTA at to the folks at CHLA. 2+ years later we've developed a strong partnership with CHLA. Dr. David Freyer, Medical Director of the Hope Survivorship program at CHLA has been extraordinary in his commitment to making RTA LA a reality.
In my experience, this story isn't unique. CCCA spends months and months developing relationships that can ultimately build the program. I've come to understand that, if there's reluctance to work with us, it's likely not driven by suspicion or competition, but simply that all the well meaning clinicians, and non-profit professionals are at their capacity taking care of patients and families, and often there are elements of the RTA program already in their institution or organization.
Could this be an easier, or at least shorter road? Well, I do think that there is an increasing recognition of the value of an advocate-driven program, like RTA. And CCCA is small, so perhaps is reasonable to assume we can't pull it off. But, awareness of the program is growing and there is recognition of our ability to lead this effort.
I know that ultimately all of us involved with patient care, pscyhosocial care and advocacy share the goal of ensuring the best outcome for every survivor. In a world of shrinking resources all of us need to be open to the notion that the total can be greater than the sum of its parts, that sharing is caring (as my partner would say), and that we all need to embrace the value collaboration for a greater good.
Hopefully Jess Reamy, CCCA's phenomal Program Associate, who is responsible for much of RTA LA, or I will post a short blog or tweet (I'm still struggling with this concept) with updates over the next couple of days.
You still have time to buy your plane ticket and join us!
-craig
Looking back, what did it take to get here? CCCA's effort in LA began almost 2 1/2 years ago when I met Kathy Riley, a passionate parent of a survivor and advocate at a brain tumor conference in LA. Kathy knew the docs and other staff at CHLA really well and importantly, knew how to get their attention. I made the first of several presentations about RTA to key staff in pediatric oncology. CHLA has tremendous clinical and community programs for survivors, so it wasn't surprising that the initial response to my proposal for a collaboration was...tepid. But Kathy and I didn't give up talking about RTA at to the folks at CHLA. 2+ years later we've developed a strong partnership with CHLA. Dr. David Freyer, Medical Director of the Hope Survivorship program at CHLA has been extraordinary in his commitment to making RTA LA a reality.
In my experience, this story isn't unique. CCCA spends months and months developing relationships that can ultimately build the program. I've come to understand that, if there's reluctance to work with us, it's likely not driven by suspicion or competition, but simply that all the well meaning clinicians, and non-profit professionals are at their capacity taking care of patients and families, and often there are elements of the RTA program already in their institution or organization.
Could this be an easier, or at least shorter road? Well, I do think that there is an increasing recognition of the value of an advocate-driven program, like RTA. And CCCA is small, so perhaps is reasonable to assume we can't pull it off. But, awareness of the program is growing and there is recognition of our ability to lead this effort.
I know that ultimately all of us involved with patient care, pscyhosocial care and advocacy share the goal of ensuring the best outcome for every survivor. In a world of shrinking resources all of us need to be open to the notion that the total can be greater than the sum of its parts, that sharing is caring (as my partner would say), and that we all need to embrace the value collaboration for a greater good.
Hopefully Jess Reamy, CCCA's phenomal Program Associate, who is responsible for much of RTA LA, or I will post a short blog or tweet (I'm still struggling with this concept) with updates over the next couple of days.
You still have time to buy your plane ticket and join us!
-craig
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