That awareness thing

Am I the only one on the planet who thinks we do not need more awareness of different cancer types? I mean yes there are some really obscure ones that need awareness and more treatment as well as metastatic cancer definitely needs more options. But really, do we really need an unending calendar of fashion shows, races, walks, and other events?

I may be cynical but I think most of us are too aware of cancer these days. Or is it just me because it has been part of my life for so long?

National Coalition for Cancer Survivorship

There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.

Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.

They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.

I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...

As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.

If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.

When do events take over their causes?

Here's a poser for early in the day: when do events take over their causes/ailments? Allow me to clarify a few things:

I think there are two kinds of events:

• The local event - a fundraiser for the family of someone with cancer or another ailment for example or for a local charity. The events are run by the people who know the family/organization and are close to them. The participants are mostly their friends with a few others thrown in. The amounts given are dug from deep down in their pockets with the concern for the monthly budget and mortgage payment. Every cent raised is handed over to a happy individual or family who may or may not even have known it was happening. Afterwards the recipient is amazed at the generosity of others and so grateful or the organization is able to continue to help others in the community.
• The other kinds of events come with media and hype - big fancy commercials and slick ads - to show up many  millions are touched by the disease/ailment/whatever each year and how everything you can do to help this wonderful worthy cause is so important, blah, blah, blah. Your donation/support/participation will help so many other people. The recipients don't really know who raised the money and the participants don't know the recipients. They are just running/riding/'sport'-ing their way to help a worthy cause because they may know someone who might have had the ailment. And they are required to raise a substantial amount of money and provide a credit card number to bill the amounts not raised. They ask their friends and families donations as they feel the pressure to do so.

There is a huge difference between the two kinds of events. While the donors and participants both might feel they are helping a worthy cause, there is a huge disconnect between the two types.

In my mind I am thinking of events like the Pan Mass Challenge which is run by the Dana Farber Cancer Institute and all funds raised are used to fund cancer research and the organized Komen Three Day, Avon Two Day, American Diabetes Association's Rides and all those other big events where no one knows each other and the recipients are far away and unknown. Does the hype and media pressure and obligations of the participants outweigh the cause itself?

I often donate to participants in these events because I know the pressure they are under to raise funds. But I also give to the local events because I care.  Does the event take over the cause because of the disconnect between the participant and the recipient when the media and hype set in? When does money and pressure supersede the cause?

Finally, am I making sense?