DC Summer Camp

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

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.

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!

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!

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

Get with the Plan

I realize that our nation has a lot on its plate; a financial meltdown, a couple of wars, and numerous other challenges, but as the saying goes, nothing else really matters if you don't have your health.

So I turn to the proposals around cancer from the Democratic and Republican candidates for president. I think context is important, so I provide the following data:
- cancer is the #1 cause of death in the US, surpassing heart disease.
- cancer is the #1 cause of death by disease in children, and has been for a long time.
- people diagnosed as children, adolescents or young adults account for 10% of the 10 million cancer survivors.
- even with the high rates of survival for some childhood cancers, these survivors pay a high price - 2/3 of them will be affected by a "late-effect" of their disease or treatment, such as toxicity to the heart or lungs from chemotherapy, impact on IQ or memory function from cranial radiation, and increased risk of being diagnosed with a second cancer.

Here are links from the candidates on how they would address cancer care as President.

McCain - http://www.johnmccain.com/Issues/HealthCare/FC.htm

Obama - http://obama.3cdn.net/f8a8d6b8b4b370d888_24lmvygeu.pdf

My analysis is that both plans need improvement to assure they meet the needs of all cancer patients, survivors and caregivers. Both plans are broad, and that is to be expected, but I hoped to see some mention of the unique needs of young people, who have different cancers than older adults, biological differences, and different life experience at their time of diagnosis and treatment.

Where is the discussion of the needs of children and adolescents? How will we address the need to more rapidly develop new therapies for pediatric cancers, which are typically rare diseases and receive limited attention from drug companies? The model of taking drugs developed for adult cancers, modifying doses and testing them on pediatric cancers is no longer yielding significant increases in survival. Where is the imperative to identify new models to develop targeted therapies, which are the future of cancer treatment?

How will we address the needs of young adult survivors who will, in many cases, live decades beyond their initial diagnosis and treatment? What are the medical interventions, along with recognition of the psycho-social, financial and educational needs to keep these survivors healthy and productive in our society? And importantly, how can we help families who care for these survivors, advocating for their care and long-term needs, many years after diagnosis?

Seniors vote, and therefore have significant clout. And certainly, as the majority of cancer patients and survivors, seniors should get a lot of attention from policy-makers. But if young people are our future, I don't think it is too much to expect our next President to consider the needs of children, adolescents and young adults with cancer.

I had hoped for greater emphasis on children with cancer in the candidates' proposals. The lack of focus should be signal to childhood cancer patients, families, and advocates. We need to work hard to raise awareness of children with cancer and demand a commitment to enact policies to address the needs of this population, whomever is the next resident of the White House.

Rainy days, Mondays, and redefining quality cancer care

Warning, I need to rant. You can move onto some other activity than reading my blog if you choose. I have generally resisted ranting, but yesterday, Monday, calls for it. Just a musical setting for my rant; "Monday, Monday," the 1966 hit from the Mommas and the Papas. Monday Monday, can't trust that day, Monday Monday, sometimes it just turns out that way Oh Monday morning, you gave me no warning of what was to be Oh Monday Monday, how could you leave and not take me.

Another, early 70's take on Mondays from the Carpenters...

Talkin' to myself and feelin' old Sometimes I'd like to quit Nothing ever seems to fit 
Hangin' around Nothing to do but frown Rainy Days and Mondays always get me down.  
What I've got they used to call the blues Nothin' is really wrong 
Feelin' like I don't belong Walkin' around Some kind of lonely clown 
Rainy Days and Mondays always get me down.

I won't attempt to provide a deep interpretation of either song, but hearing these songs always
made me a bit melancholy, a bit helpless and anxious for the end of the day.

This past Monday, I received three calls from family members of three young people with cancer, from three different locations around the country. The reason for their calls was the same; a child in the family had cancer, and while they had found the specialized pediatric oncology care to treat their child, the ripple effect on the family has resulted in financial crisis. "I can't pay my rent because I have to take my child to the hospital and lost my job. I have two other kids. Can you help?"

That was just one family's story, but the other families had similar challenges. I had little help to offer. There are few organizations that provide direct financial assistance, they are likely to be in the local community and often it requires a lot of digging to identify them. I dug, and dug some more, with minimal success. I felt like I had failed these families, perhaps their communities had failed them, certainly the health care and family services systems had failed them.

The Children's Cause typically receives two or three calls in a MONTH seeking financial assistance, this was three calls in a DAY! I realize that this isn't a statistically significant sample, but I've heard similar stories from my colleagues in the cancer community. Whether these family crises are brought about by the current economic downturn or the necessity in many families for both parents to work, which becomes unsustainable if one parent must reduce their hours or leave their job in order to take care of a child with cancer, I have trouble understanding how it is acceptable for our society to not provide support for children with cancer and their families through the extended impact of the disease.

There are approximately 12,500 new diagnoses of childhood cancer in the US each year. Thankfully, a rare number, and through research investments, many childhood cancers have high rates of survival. But, as the calls I received well illustrate, eliminating the disease is only one piece of the picture. Be it the late effects of toxic treatments, post-traumatic that can impact patients and family members for years after treatment, or the financial hardship that a family may face as a result of their effort to ensure that their child receives quality cancer care, it's a fallacy to believe that providing funds for research and treatment is where our societal obligation to these children ends.

Our debate about health reform in the next administration, regardless of which candidate or party you support, should reflect the fact that cancer is a chronic disease that impacts patients and families. If you don't believe that as a society we have a moral obligation to provide resources to ensure the long-term wellness childhood cancer patients, then look at it in parallel to the debate of recent years about education in the US. If it is in the economic best interest of our nation and our society's obligation to have an educated population, and that all children should receive a quality education, regardless of their socio-economic status or other individual challenges, why is it OK to allow to a family to declare bankruptcy in the pursuit of saving their child's life? Why is it OK to deny access to follow-up care for a survivor, limiting their potential and contributions to the greater community?

The odds are better for kids with cancer and their families fight to beat the disease, in large part because of our collective commitment through our government, to fund research. Why aren't we willing to help pay the rent?

Be well. I hope your coming Monday is a good one.