Everything Changes - The Guide to Young Adult Cancer

Early on in my five-year research stint on young adult cancer, I learned about the down sides of the American Cancer Society.  They have no direct support services, education, or research targeted to young adult cancer patients.   But let’s not throw the baby out with the bath water.  Here is why I love American Cancer Society anyway.

Check this out:  Young adults are the largest group of underinsured and uninsured adults in the United States.  This plays a huge part in our delayed diagnosis, and is a big reason why young adult cancer survival rates have not budged in 30 years.  Health insurance is one of our biggest barriers to survival, but who in the cancer community is stepping up the plate to talk about this?  Almost nobody but the American Cancer Society’s Cancer Action Network (ACS CAN).

I got a press release from ACS yesterday that calls upon Congress to enact legislation that will ditch evil pre-existing condition exclusions from health insurance. ACS CAN is asking legislators to make sure subsidies are available for cancer patients who can’t afford treatment.  ACS CAN spoke out about improving access to palliative care and so much more.  I get emails daily from young cancer survivors writing about these very issues.

When I was writing a section in my book about how young adult cancer survivors can make a difference, ACS was the only cancer org I found mobilizing to influence long lasting change around access to healthcare.  Only they truly understood that we have to use the power of our voices and votes to change cancer survival rates.  What could be more worthwhile?

Do you support the American Cancer Society?  Have you participated in fundraising efforts or action center?  What other kinds of services have they provided you with during cancer?

I am blogging from my parent’s house.  Tonight is Passover in Pittsburgh, a welcome pit stop on my whirlwind book tour, which included not only cancer conferences, book bashes, and benefits for young adult cancer, but also the Capitol.

I slide my book across the desks of Senators and Representatives, saying to their legislative aides: “The survival rates for adolescent and young adult cancer patients have not budged since Nixon declared war on cancer in 1971. We have abysmal access to health insurance and clinical trials. And we’re not gonna take it any more…” (Cue the Twisted Sister.)

I’ll soon debrief you on my extremely successful congressional meetings, nagging you with concrete tasks that you and your family and friends need to take to make legislative change for young adult cancer survivors.

But first, I want you to see that any one of us can try to make a big change. I have no legislative expertise. I’d never before met with congressional staff. Yet I sauntered up to Congress and gave them a polite, constructive piece of my mind. I’m tired of complaining about what is wrong with health care, and I want to fix it. If I can do it….. so can you!

Karate chopping cancer outside of Senator Kay Bailey Hutchinson’s office

You can pick your friends, and you can pick your nose, but did you know that at the Capitol you can pick Abe Lincoln’s nose?

Did you know that Senator Kennedy is a huge proponent of funding for research on rare and ultra rare cancers?  Pretty cool.

You don’t need a fancy political science background to take the bull by the horns.

Bulls come in many shapes and sizes.