For those who think we don't need reform...

RB: ... read the story of Kyler here.

A 5-year old boy is battling neuroblastoma, and his insurance company, HealthAmerica, has denied coverage for treatment (including denying an appeal), because the therapy recommended by his oncologist, MIBG, is considered by HealthAmerica to be "investigational/experimental".

Here is an email I received asking for help:

Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more.

Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.

The Plan:

Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission.

When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!

The Tidal Wave:

Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?

We didn’t think so. Give the gift of life this holiday season.

The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010

With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.

Also, PLEASE check out the "Arms Wide Open" Facebook Page for more information, and, regrettably, more stories of families in the same situation...

Your perspective on donating

RB: One of the things I have learned in the time that I have followed Zuska's blog, is that the more I peel away the layers on my own "bias onion", the more layers I find. At times it is a bit discouraging, but also enlightening, and at least I recognize my shortcomings and try to address them.

Recently, I peeled away another layer when Zuska and I had a conversation about the collection jars in her original post. I remarked that in my youth (when I was not so wise or mature), I did not see too many of these jars asking for donations, and when I did, I often felt that somehow the people who needed help were at fault. I thought that maybe they spent all their money unwisely, or that they did something wrong to be in that situation. Zuska replied that her experience was far different, and that she always felt the jars were "a fact of life, as what people had to do to get by."

Her email continued:

Do you think your earlier in life reaction to these was affected by the socioeconomic background of your upbringing? What I am trying to get at - if you were raised in relatively comfortable circumstances, with access to reasonable health insurance, and most people around you the same, then the appearance of such jars would seem like the "fault" of the people involved...different perspective if you are embedded in a community on the margins.

My thoughts and feelings have changed as I have matured. I realize how foolish my initial interpretations were, but given the context of my upbringing, they were not surprising. I now know how hard life can be, having lived a lot more of it. For myself, a long-term illness or severe health trauma would sap my financial resources in a heartbeat. It is scary to think that so many families are "that close" to the edge.

The jars themselves are objects -- they exist on their own, and their purpose is set. But how we interpret them can be very different, depending on the baggage we bring to the table.

What about you? Did you live in a community that saw a lot of these jars (or other fundraisers) when you were young? What did you think then? And has your perspective changed?

Sorry for the delay...

RB: ... in updating. The "silly season" has abated somewhat, so I'll be able to devote more time to the blog. My apologies that posting has been sporadic. Of course, I realize that my own trials and tribulations are minuscule compared to others, so I do feel a pang of guilt at being kept away. Updates should be more frequent. Please remember to submit any ideas, photos, feedback, etc. to beggar.nation at gmail.com

How you can help

Posted by RB:

We're just getting started here, but hopefully we can gain some momentum, and show our elected leaders the paradox inherent in our healthcare system. Those who don't want it changed say we have the "greatest health care system in the world", yet there are increasing numbers of people who don't have insurance, can't afford insurance, or have a plan and have already maxed out the lifetime benefits.

How can you help? Pick one, or many:

1) Send us photos of any donation jars or donation notices in your area. Also, let us know at least what state the photo comes from, if not the city and state. If your GIMP skills are lacking, we will block out any last names in the photo. We'll also tag it with the state name, so elected officials can see a tally of how many of these are from their home state. I would also suggest leaving a donation, and perhaps a note pointing them to this blog.

2) Point as many people as you can to this blog, especially elected officials!

3) If there are people who are in this situation in your area, ask them if they'd like to come forward with their story. Since we cannot travel around the country doing this, we're relying on you to interview people, and submit the story to us. We'll then publish it on the blog.

4) Use the link from the previous post to contact your government officials, and ask them their thoughts on solving the problem of people not being able to afford healthcare. Submit the interviews to us, and we'll publish them.

Any and all photos, submissions, ideas, feedback, etc. can be sent to beggar.nation@gmail.com.