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.

June is Science, Schmoozing, and Agoraphobia

If you're a fan of musicals (stop groaning), you probably know the song, "June is bustin' out all over" from Carousel. The lyrics talk of how, "you can feel it in your heart, you can see it in the ground," and buds, saplings and romping rivers. Makes you want to run barefoot through the meadow, or in my case, through the small, weed-filled park where I take my dog.

June is nearly over and I can't say that I've seen much of buds, saplings, and romping rivers, unless you count my visit to the Buckingham fountain in Chicago. I was at the annual meeting of ASCO, that's the American Society of Clinical Oncology, BIO, followed by the Biotechnology Industry Organization in San Diego, and most recently, and most recently, a meeting of the IOM, Institute of Medicine, titled, "Drug Development for Rare and Neglected Diseases and Individualized Therapies."

There were common features of all these gatherings. I attended interesting, if occasionally incomprehensible, presentations on advances in medical research, science and technology that hold the promise of getting new therapies to cancer patients, saving more lives and leaving survivors with fewer long-term effects. Lots of networking, networking, networking - aka, schmoozing; patient advocates and docs and researchers and drug company folks using these gatherings to share information, meet, and promote their cause. The exhibit halls at ASCO and BIO are like adult carnivals, complete with frozen yogurt and espresso. But heck, the vast majority of people in the cancer world, docs, nurses, social workers, advocates, and yes, those evil drug people, have the best intentions to improve the lives of people with cancer, and work very hard to make that happen. So who am I to question a crab cake hors d'oeuvre and a glass of pinot grigio. Finally, there are the crowds. ASCO has 35,000+ cancer docs from around the world! These meetings were a test for those, like me, who feel even mild anxiety from the crush of people, the occasional spilling of drinks, and rush for the carving station.

I came away from this month of meetings exhausted, inspired by a small number new drugs for rare cancers under development, and the potential, with advances in research technology to get studies done and new therapies for rare cancers brought to market more quickly. And I was sobered by presentations of research reporting the significant medical challenges that many long-term childhood cancer survivors face.

I couldn't finish without recognizing, with great sadness, the loss of two extraordinary advocates. Patty Delaney, associate director of the FDA's Cancer Liaison Program, died of ALL on June 2. Patty was one of my first mentors in patient advocacy. She was a great teacher, passionate advocate, articulate and had great style and knew good food.

Allan Goldberg was a childhood cancer survivor and went on to become Executive Director of First Descents, a group that sponsors kayaking and outdoor experiences for young adults with cancer. I didn't know him well, but his positive perspective and persistence in achieving personal and professional goals is model to all of us.

So, while I didn't see much natural light during the longer days of June, and it's hard not to be a melancholy at the loss of Patty and Allan, I do feel renewed to forge ahead, with the inspiration of all that Patty and Allan did for their fellow survivors, the possibility of saving more lives and and the partnership of my fellow cancer advocates.

Note to self: politics and cancer are personal

Admission - I'm a brain tumor survivor, a cancer patient advocate, and I go to a lot of meetings. I feel passionate about my work and sometimes take a strange pride when a meeting, particularly one that I lead, is successful. Saying, "boy, that was a good meeting!" is a surrogate for "we had a robust (one of my favorite words) policy discussion which might (after numerous additional meetings) result in additional research dollars for the National Institutes of Health,"
or "we brought together hospitals and organizations to discuss a program for young adult survivors and just getting them in the same room at the same time is really great."

I realize that this is how the world works, particularly the non-profit world.

Then Senator Edward Kennedy was diagnosed with a brain tumor days after he led a Senate hearing about new cancer legislation he is proposing. It was a pretty good meeting.

Senator Kennedy's diagnosis reminded me of how fortunate I am to have survived 14 years, and knowing the variety of painful treatments ahead for the Senator, great sympathy for the him and his family. Suddenly, I saw him less as a champion of quality health care in the US and more as a fellow brain tumor survivor.

Senator Kennedy's illness has brought significant media attention to brain tumors. The New York Times had an article today, "Hints of Progress in Drugs Treating Brain Cancer." The article discusses two new brain tumor treatments. One doubles brain tumor survival from 15 months to 30 months. The other adds 2-3 months to a patient's life. Among childhood cancers, which, like brain tumors are considered a group of rare diseases, only one new drug has been developed in 15 years. Sorry, that's just not good enough.

I know that it takes time, years, to develop new cancer therapies. And rare cancers including brain tumors are at a disadvantage because of limited investment from pharmaceutical companies. But more meetings, even when we "do good meeting," isn't enough. Senator Kennedy's cancer diagnosis and every time we interact with a person dealing with cancer, or the challenges of being a survivor, is a reminder. We must bring the urgency of the needs that cancer patients are facing TODAY.

Let's keep Senator Kennedy and every cancer patient in our thoughts and remember them when we walk into the conference room for the next meeting.

-craig

Baseball and Congress; ya gotta believe

I'm not much of an athlete, but I've always been a baseball fan. Growing up in the suburbs of New York City, I was fortunate to spend many weekends at Shea Stadium, watching the New York Mets. My parents, like many Mets fans of their generation, had been Brooklyn Dodger fans until the Dodgers deserted Brooklyn for LA. Being a real Brooklyn Dodger fan meant sticking with a team year in and year out, that frequently disappointed. My parents always told me that becoming Mets fans once the Dodgers were gone was logical for two reasons; they weren't the detested Yankees, and there was always hope for a winning season, but they would frequently let you down, like their Dodger predecessors.

I was there, on a very cold October night at Shea Stadium, during the 1973 World Series. It was so exciting, and there was so much hope, with Tug McGraw's cheer of "ya gotta believe." But ultimately the Mets lost the series.

Making change in Washington can be a bit like being a Mets fan. But April 14 and the weeks since, have been a winning streak for childhood cancer survivors and their families. You'll remember from my previous blog that the Children's Cause for Cancer Advocacy had it's first lobby day on April 14. 42 survivors and parents went to Capitol Hill to ask members of Congress to support HR 4450, Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. The meetings that these advocates made had a direct impact, with 7 additional members of Congress agreeing to co-sponsor the bill since April 14! And, a Senate version of HR 4450 was also just introduced, by Senator Hilary Clinton.

This is really just the beginning for this bill. All of us can make a difference and it will take the collective voices of survivors, friends and families to move this bill through Congress. We have to be patient and PERSISTENT. 42 advocates told their stories, and members of Congress listened. So, we can like those fans who only care about their teams when they are winners. There will be loses, and there will be wins, but "ya gotta believe."

As a side note, since I have been in Washington, DC for almost 10 years, my adopted baseball team is the Nationals (I still root for the Mets too). The Nats started this season with a miserable record of 7 consecutive loses. Now, they won 7 out of their last 9 games.

Tug McGraw had it right.

Survivors make a difference on Capitol Hill and even the cynics smile!

Monday was a a beautiful Spring day in Washington, DC and a great day for young adult cancer survivors and the Children's Cause for Cancer Advocacy (CCCA). CCCA held its first lobby day, which brought together 42 survivors and family members meeting with 20 House members or their staffs. The lobby day followed a great weekend of learning, networking and fun - our second Rise to Action - DC conference, held on the Georgetown University campus, and attended by 130 survivors in their teens, 20's and 30's, plus family members.

As a former New Yorker and having lived in DC for almost 10 years, I'll admit a tendency to be a bit cynical (I like to say I'm a realist) about politics and the opportunity for individual citizens to have an impact in an environment that is cluttered with numerous advocates working for lots of worthy causes and professional lobbyists.

But CCCA's lobby day showed, to paraphrase Margaret Mead, that a small group of passionate survivors can go to Capitol Hill, share their stories, and motivate members of Congress to take action. The primary bill that the advocates brought to Capitol Hill was HR 4450, the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. Several of the meetings that advocates held with members of Congress or their staff yielded commitments to support the legislation. This is just the beginning of a long process, but the voices and stories of young adult survivors created great momentum, and we need to continue building on their efforts.

I'll provide updates as more news on this bill and other legislation important to survivors moves through Congress.

-craig

My very first blog - a bit nervous

Hi,

Craig Lustig here. I've done my best to delay, procrastinate, and avoid this, but my kind co-worker, Jess, has promised me it won't be too painful. Reminds me of what the dentist says before he begins drilling. And I keep questioning who really wants to read what I have I to say.

Let me introduce myself. I'm a 14-year pediatric brain tumor survivor, diagnosed as a young adult. 2 years of mostly unpleasant medical procedures, including a recurrence of the cancer, but I've been fortunate to have good health for the last dozen years.

Like many other cancer survivors I faced the questions of what direction my life would take after cancer treatment and I was deemed "in remission." This second phase of my cancer journey took me from living in New York City, working in advertising to being an active volunteer with several cancer groups, going to graduate school, and ultimately moving to Washington, DC to enter a fellowship program at the National Institutes of Health. Fast forward a bit, I am currently the Executive Director of the Children's Cause for Cancer Advocacy, where I've been for close to 5 years.

My goal is to post a blog once a week, and share something about the work of the Children's Cause for Cancer Advocacy (CCCA). I'll also share recent articles of interest to survivors in their teens, twenties and thirties, and alert you to legislation in Congress, or other activities at the Federal and State level that impacts cancer survivors.

For this to be really successful, I want and need your feedback. What's important to you as a cancer survivor, family member or friend? If you've been part of a CCCA activity, tell me what you liked about it and how we can improve it. What programs, projects or information would you like to see us develop?

Rise To Action - DC is coming up, April 12-13. This conference for survivors and families is a great opportunity to meet and network with other survivors, gather information on a variety of topics, win educational scholarships, and yes, it's fun. The conference is being held on the Georgetown University campus - more details and registration can be found on our website - childrenscause.org.

-craig