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.