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A Department of Justice press release dated September 17, 2008 said that the government will not oppose  a proposal by CEO Roundtable on Cancer that they develop the model contract language for clinical trials of potential new cancer treatments. The department found that the proposal would not be “anti-competetive.”  The press release described CEO Roundtable on Cancer as “a non-profit corporation.”

What the release did not say is that the “non-profit organization” CEO Roundtable is made up of heads of Big Pharma, a phrase that is often used to refer to companies with revenue in excess of $3 billion, and/or R&D expenditure in excess of $500 million.

Will Big Pharma’s control over what constitutes a clinical trial exclude non-pharmaceutical approaches, including the impact of nutrition and vitamins, to curing cancer?

WASHINGTON The Department of Justice announced today that it will not oppose a proposal by the CEO Roundtable on Cancer (CRC) to develop and publicize model contract language for clinical trials of potential new cancer treatments. The Department said the language is not likely to be anticompetitive and can be used to help increase efficiency in contract negotiations, potentially reducing costs and shortening the time needed to begin clinical trials.

The Department’s position was stated in a business review letter from Thomas O. Barnett, Assistant Attorney General for the Antitrust Division, to counsel for the CRC.

The CRC and the National Cancer Institute (NCI) will jointly lead the project to develop model language for clinical trials. The CRC is a non-profit organization whose goal is to make continuous progress toward the elimination of cancer as a personal disease and public-health problem. The NCI is the federal government’s principal agency for cancer research and training and is part of the U.S. National Institutes of Health.

The CRC requested a business review letter from the Division expressing its enforcement intentions regarding the CRC’s and NCI’s proposal to develop and publicize model clauses for use in clinical-trial agreements. Clinical-trial agreements typically involve three parties: a pharmaceutical or medical-device company known as a “sponsor”; a hospital, clinic, or university where the research is performed, known as the “research institution”; and the physician who is in charge of the trial, known as the “principal investigator.”

“Making the model language available to sponsors, research institutions, and principal investigators, as proposed by CRC, is not likely to reduce competition,” Barnett said in the letter. In the letter, Barnett explained that the “model language does not contain any provisions specifying prices or rates,” and that “[w]hether to use the language or any of its provisions will be left to the determination of each party acting independently.”

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Sign up deadlines will start running soon for this program so check it out!

Casting for Recovery provides fly fishing retreats at locations around the United States. Retreats are specifically designed for women who have or have had breast cancer.

Fly Fishing – “A Sport for Life” We enhance the lives of breast cancer survivors by offering no-cost retreats tailored to promote and support mental and physical healing, shared experiences, and the hope that comes from learning new skills.

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Another great presenter at the December retreat was Carolyn Scott Kortge, author of The Spirited Walker

http://spiritedwalker.com/

Power Talk for Walkers

“Whether you think you can, or think you can’t, you’re probably right.”—Henry Ford

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retreat.jpgDecember 2007. Retreat.

I went to the site of the guided labyrinth as the sun went down behind the Catalinas and rainy gray clouds were tinged with pink.

The woman who guides the traveling labyrinth program and who spoke this morning talked to a small group of women about how there are no rules to the labyrinth.

She wanted to hear my experience from yesterday and I told her my story of unwinding from my ego, and how I hoped I could create a labyrinth when I got home, and my friend who has a canvas business.

One of the women who came to walk tonight was on the program this morning talking about collateral survivors. She told the story of a 12-year old girl who was dying of cancer and whose greatest fear was being alone.  So her mother made sure she was never alone. And when the girl was dying, her mother got into bed with her and held her while she died. And when the woman got to the end of this story and we – – all one hundred of us — were in tears, she told us that she was the mother she was talking about.  And she wasn’t sure whether she was going to be able to tell us the story.

How hard a journey for those caretakers. What an amazing group of women here. Everyone has stared this disease and mortality in the face, lived with its real possibilities and prognoses and made decisions about what to do about it. Some of us here will outlive other people who have never been given this “sentence.” But everyone here has faced this diagnosis and what it can mean, whether they are the ones with cancer or not.

The retreat is for cancer survivors and oncology nurses. So the question when we introduce ourselves to each other is, “are you a survivor?” (as opposed to a nurse).  Some of these oncology nurses later got cancer.

 Some women here don’t use the term “survivor.”  The question was asked, when do we quit being a patient and become a survivor? Some of us are still in treatment or very aggressive followup. Some say you become a survivor the moment you get the diagnosis. Sarah says she is a “patient” which is what I have been calling myself because I recently finished radiation therapy and I haven’t adjusted yet being “after treatment.”  More on that later.

Edith Eger, one of our motivational speakers, said she didn’t “want to have to be a fighter.” It was hard for me to keep feeling sorry for myself for having cancer when I heard her story of losing her parents at Auschwitz and being a survivor of the Holocaust.  She also says

Contrary to popular belief, there are no victims in this world – only willing participants. You can’t always control your circumstances, but you can control how you respond to them.

I don’t believe that. But who am I to argue with her?

Edith Eva Eger in her bright yellow clothes and scarves.

 

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Start where you are, with what you have, and what you know. And what you love.

December 2007. Retreat. Today the woman who created the traveling labyrinth and guides the labyrinth walks at the retreat was on an advocacy panel. She came to this retreat last year as a cancer survivor and went home thinking she would do many things – start a retreat in the northeastern U.S., support groups, etc. and then realized we have to start where we are, with what we have, and what we know.  And with what we love.

She says she didn’t have much energy, but she knew she loved teaching. And she loved labyrinths. So she created a traveling healing labyrinth on canvas (I thought of my friend who has a canvas business) and she guides the walks. When people finish the walk they are given a journal or clay or pastels so they can capture the experience.

It was the most compelling and exciting thing and I want to make a labyrinth when I go home.

www.labyrinthjourney.com

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tucson.jpgDecember 2007.  Retreat outside Tucson.  Beautiful soft rain falling off and on all day with the top of the Catalina Mountains in the mist. I walked around the grounds today. What a beautiful oasis they have created here with a stream and waterfalls and walking paths through a desert-scape.

I got to talk to Sarah Weddington today. I was thrilled. I spent an entire hour sitting one seat behind her two days ago on the shuttle from the airport but didn’t know who she was at the time because I don’t put myself out there and say, Hello, who are you, tell me about yourself.  I wouldn’t have, anyway, because I heard her say she was tired and was going to rest until we arrived. And I had my headache.

From the back she looked a little rumpled, and her long gray hair was falling out of a comb where it was loosely attached. She was kind when we checked in and offered to let me go ahead because she said she thought I was more tired than she was. I am so glad I refused.

Especially when they introduced a keynote speaker the next day and she came striding out dressed beautifully in power purple-blue with her white hair neatly coiffed and talked to us about her life and her experience with breast cancer.

In addition to her own huge accomplishments, she was also a personal friend of Ann Richards and Molly Ivins.  I wish I could even imagine what friendships — and conversations! –  between those powerful women were like. 

Richards died in 2006 from esophageal cancer. Ivins died in January 2007 at the age of 62 from breast cancer. 

Weddington says about her experience with her own cancer:

I’ve come to think of cancer cells as being like Osama bin Laden. We don’t know if he’s dead or alive and hiding in some cave. Similarly, I don’t know if the cancer is dead or alive and hiding in body caves and waiting to jump out and shout “boo!” I’m grateful to be NED, but I’d prefer to have a more permanent diagnosis.

…… My journey continues day by day. I am simultaneously acknowledging uncertainty and planning for the future. I am still searching for Osama but also finding more reasons to celebrate life.

I would have gone to Tucson just to get to meet Sarah Weddington. Her work and dedication and drive is astonishing. And I am humbled to meet someone who knew Ann and Molly. We all suffered with the loss of those two women. 

May there be no more Osama for Sarah.

Today I was making a cup of tea during a break when I saw Sarah in the hallway and I got to introduce myself and tell her how much I admire her. And I told her how much we miss Ann and Molly. 

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labyrinth.jpgDecember 2007. It is not a perfect world. I had stared at the photo of the labyrinth for months on my notebook desktop. When I finally arrived at the retreat for cancer survivors and oncology nurses and found my way along the paths to the labyrinth, there was a construction fence around it. Loud men and their machines dominated the atmosphere, just like in real life, and I had to decide whether to let them come between me and the meditative experience I had planned. Just like in real life.

The fence blocked the view of the Catalina mountains from the backdrop but I could see them overhead – craggy, mystical, foreboding, not green and lush and soothing like the pine forested Rockies. I thought how inhospitable the mountains would be to people walking over from Mexico.

I was disappointed – should I go ahead and try to walk the labyrinth the way I found it? It had taken every bit of energy I had and then some to make the trip. I was not coming all this way and not walking the labyrinth.

So I started the walk in spite of the loud men and their machines and the imperfect world.

I picked up a small rock to carry with me to begin a meditation with, as I did with all my walks. It represented my self-centeredness and my self-preoccupation, especially since my cancer diagnosis. It was broken on one side. It was rough to the touch. It had been broken traumatically, not worn smooth over time.  It hadn’t been aged in water, but was ground by sand in an arid place.

I noticed snake holes in the ground. This would be a place to be wary of rattlesnakes – cascavel – in warmer weather. Maybe even now. The holes looked new in the sand in some places.  I walked around them. I continued on in spite of them and knew I would have done so even if it had been warmer.

There was no one else around. The wind blew my hair. I wore my shawl around my waist in case I needed it around my shoulders before I was done.  The clouds were gathering at the top of the mountains. A golden thread of sun lit the edge of the clouds.

I was full of my dissatisfied self as I walked, my regrets and resentments and recriminations. I was angry and afraid because I had cancer. I had surgery and six weeks of radiation completed six weeks before the retreat. I was afraid I made the wrong decision about chemo.  I thought I would be glad to be back to my “normal” life at work but I still didn’t feel good.  Everything took an enormous amount of effort, including making this trip, and I acted like a baby when I got there, needing special attention even though I was in a large group of women who also had cancer and many were in worse health and had been through much more than I had.  What was wrong with me — could I go nowhere and just be a part of a group? Wasn’t there anywhere I fit in? Why was I here? Why couldn’t I just relax and enjoy this?  Me. . . . me. . . .me.  Whine. . .. whine. . .whine.  I was distracted by these thoughts more than the noise from the construction on the other side of the fence.

 The path became narrower and the turns sharper as I neared the middle of the labyrinth. I reached the center.  I took the rock that was my ego and selfishness and placed it on a pile of rocks of various sizes. I didn’t put it on the top – just to the side. As soon as I let go, I realized that each little pebble and stone represented a person who had entered here looking for something and found a memorial to the hope we held in our spirits. I saw them lay down their pain and lift up their prayers: a sisterhood. A community. Not individuals. There was healing here in this unity.

I turned around to walk the paths back out, to complete my counter-clockwise journey, an unwinding of what had been too tightly wound and as soon as I faced the other direction I was no longer thinking of my broken self, my baby-ness.

I picked up a rock for my sister, because she loved my picture of the labyrinth. I saw another little smooth stone that had lain under the feet of those who walked and meditated here and I picked that up for my friend _______, another breast cancer sister. And I picked up another one for ____ who has some trials but hasn’t told us what they are. I picked up another one for _______, the first of the Towandans to tell us she had cancer and has been through this for five years now.

I thought of the talk at the retreat today:  Get Strong. Stay Strong. Help Heal. I continue to hear that same message as in AA: turn your thoughts to others. Heal yourself by healing others.

It may not change the “prognosis,” the numbers, the survival rate, the chance of recurrence, and no one would study that because there is no profit to it in the business world.

But it probably changes our entire perspective on life, the way it does when it is practiced in AA.

When we begin to heal, we want to turn our thoughts to others and share our experiences in ways that help people through things we may not have had help with. To give a hand where we really wished we would have had one.  And that helps us.

  (An advocacy panel included a presentation by Janine Mariscotti, M.S.W., L.C.S.W. who has a web site called LabyrinthJourney.)

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