And you wonder where I get it from?

Tuesday was advocacy day at the capital in Pennsylvania. Harrisburg was filled with senators and lobbying committees, attempting in their small way to change our world bit by bit. Just as I have been pursuing a new career path, I'm proud to say that my mother, has as well.


My mother recently took over a director's position at Gilda's Club. Gilda's club is a community in the Deleware Valley (near my hometown of Doylestown, PA) that is dedicated to building social and emotional support for cancer patients, survivors, caretakers, and for these individuals to share hopes, fears, wisdom, and laughter through workshops, support groups, and curriculum.

As a side note, my mother and I walked into Gilda's club when I was first diagnosed in 2006, to attain some support networks and were SO disappointed with their advocacy and approach for their outreach programs -- that we both ended up counseling some of the people during that first meeting, and then, ran for the hills. But! Now, she is basically putting together support groups for blood cancer for young adults (and adults in general), advocating workshops for all ages, promoting this small community to the best of her knowledge. Like always, she's taking what she has, finding the silver lining in this horrible disease, and making it her own. Anyone near the Philly area should attempt to volunteer, join, or just be a part of the network -- it's getting bigger by the week.

Anyway, the point. As the Program directory of Gilda's Club, my mother spoke on behalf of Senate Bill 1198. The jist of this bill that we're trying to pass is based off the Cancer Clinical Trials Act. Long story short, you know all of us out there, on clinical trials (these trials are free, the drug itself), but don't have great health care coverage otherwise? Like coverage for White Blood Cell Shots (1200 dollers a pop), anti-nasea pills (sometimes 700 dollars a pill), or transfusions (you don't even want to know), so if don't have great coverage -- you can kiss your money goodbye. Luckily, I was part of a union, so this does not affect me greatly. But, it affects a lot of my friends.

* So, Bill 1198 would require insurers to provide coverage for ALL routine patient care costs when insured participates are participating in an approved cancer clinical trial. It's a small bill, for a small group of people. But it's important. These individuals, like me, are not only trying to survive, but giving our bodies to science in hope for finding a cure for you, your kids, and your grandkids! So no one has to die of this cancer.

*Edit to add (from my mother): the bill is along the same lines as 1198, but called HB 58. The senator who proposed the senate bill is stepping back- because the house unanimously passed HB 58.

1. However, they are expecting a bigger battle in the PA Senate, supporting the house bill should make it a bit easier.
2. So we are asking everyone who lives in PA to call their state senators(NOT Spector or Casey - they are federal) and ask them to ask their senators to contact Senator White- head of the insurance committee- to report the bill out of the insurance committee- and then ask their Senators to support the bill.
3. The bill has been defeated for the last three years. But, 24 states already have passed this bill- which only asks insurance companies to cover routine medical care for patients on clinical trials. Medicare recently started to cover this and there was an almost doubling of Medicare covered patients joining clinical trials. Lack of medical coverage is clearly a barrier.
   

My mothers (Darlene and Diane), drove to Harrisburg on Tuesday. My mom was asked to speak a bit... and later, I was told (which we all know would be true) that there wasn't a dry eye in the house. Here are just a few notes, of what she wrote down -- However, my mom is an amazingly powerful speaker, and if I can find someone who had video of her. I'll make sure to post that as well, since she added a lot of things inbetween.

So you wonder where I get most of my strength and power, tenacity, drive and resiliency from? Although I may hate to admit it some days, it's definitely from her. In addition, Diane, the other rock of our family, drove with my mother to lobby on account of this bill. Her unwavering and dedicated support, to our family, and this disease maybe a tad bit more quite than my mother's or my words... but it is still as solid, noticed, and appreciated. Especially since she was doing this work on her birthday week (Happy Birthday today - Di!)



So, I wanted to leave you all with my mother's words.. and hope you leave her some words of encouragement and positive thoughts.
You can email her at: KAOSX5@aol.com
Or you can easily leave a comment for her, on my blog -- as she reads it daily.

On Behalf of Senate Bill HB 58

Darlene's Words, Program Director from Gilda's Club

I am here to speak for my daughter Rebekah, because she can't be here. Rebekah is my firstborn. Bright, beautiful, fiesty, independent, athletic. She knew from the time she was little that she wanted to be a teacher.

Rebekah graduated from college in May 2006. at 22. She accepted a teaching position in Jacksonville, Fla, right out of college. In Dec 2006, She came home for a visit and on the way home from the airport and mentioned a lump in her neck. In January 2007, she was diagnosed with Hodgkin’s lymphoma, took a leave from her teaching job and returned to Pennsylvania for treatment at UPenn. She received chemotherapy from January to July. She was unable to work- or do much else.

She then achieved remission and moved to Boston to begin graduate school and return to teaching. In December 2007, she relapsed. And returned to Pennsylvania to undergo a stem cell transplant. Her life stopped during treatment. She was very sick. Had several hospitalizations due to side effects of treatment. Our life stood still as well as we became her fulltime caregivers.

Salvage chemo put her into remission once again. As she underwent an auto stem cell transplant in May, and in July 2008 she returned to Boston to resume graduate school... Shortly threafter, she had a PET scan and we learned the the transplant had failed.

Rebekah was/is now considered to be refractory- resistant to treatment. She was put on social security disability. She was 24 years old.

Rebekah was told she had two choices- an allo transplant- which is risky, small odds of success and required spending the better part another year of her life in debilitating treatment- or clinical trials.

In Fall of 2008, she began clinical trials at Dana Farber in Boston, where she is currently being treated. Rebekah can't be here today because she has class. Rebekah currently attends graduate school where she is pursuing a masters in counseling psychology full time. She is living fully and independently. She sees friends, goes on vacation, goes to school. She goes to the hospital once a week for tests- and dosing.

Clinical trials have not only treated Rebekah’s cancer- but she has achieved a significant reduction in her disease- as these trials have allowed her to live her life. Rebekah was lucky that her first job was a union job. They continued her health benefits for two years while she was on leave. She has only recently started using COBRA.

If her insurance did not cover the extra medical costs of treatment- I'm not sure how we would have afforded the costs. By the time you get to clinical trials- a family’s resources are often completely depleted. A Cancer diagnosis changes your life- and the lives of everyone who loves you. So many hopes and dreams are shattered.

Our family was financially devastated by the costs and lost income associated with Rebekah's first two lines of treatment. Fighting cancer is hard enough without being consumed by the medical and financial costs that come with that fight. At Gilda’s Club Delaware Valley- I work every day with individuals who have found hope in clinical trials. Yet they struggle with the costs that accompany treatment.

I am honored to speak today for all those people- and Rebekah- those amazing cancer warriors- the true trailblazers -who are on the cutting edge of medicine- contributing to the search for the cure- that will benefit those who come after them- and all of us. These individuals are heroes who want nothing more than the chance to live their lives,
love their families and
reclaim their dreams.

The least that we can do is insure that they won't have to worry about additional medical costs as they do so.


A little more than two years ago, this disease began to change my life. But, bit by bit, it appears, we, especially my mothers, are attempting to seek the change that is so necessary, to better others' lives along the way. As we all continue the fight.

Sending Love,
to each of you,

B