Posted 11/07/2006

Arnold School cancer survivor joins ranks
of "Livestrong Army"

EDITOR’S NOTE: Olga Ogoussan’s courage in the face of a five-year struggle with cancer is well known at the Arnold School of Public Health.  Her inspiring example was one reason she was invited to the first Livestrong Survivor Summit organized by the Lance Armstrong Foundation, Oct. 27-29, in Austin, TX. The purpose of the meeting was “to organize, inspire and direct the efforts of cancer survivors from across the country to change the face of cancer survivorship.”  We asked Olga to report on what she learned at the summit and share some of the news in this online report.

 By Olga Ogoussan
 Doctoral Candidate
 Arnold School of Public Health

The goal of the Livestrong Survivor Summit is to inspire and train the selected delegates to improve the face of cancer survivorship. If you ask me, this is what public health and health advocacy are about. It is about people sharing the same issues coming together to improve their lives and the lives of many others who will walk in their shoes.  At least this is what the Lance Armstrong Foundation (LAF) is hoping to achieve by creating what it calls the Livestrong Army to improve cancer survivorship in the United States and in the world. 

Although strides have been made since President Richard Nixon declared war on cancer in 1971, it still remains as one of the most challenging diseases our society faces. 

For patients and their caregivers, the diagnosis of cancer comes with a unique experience of emotional distress. It comes with exceptionally difficult challenges because it follows no rules.  The treatment itself can be debilitating, and anxiety often follows over what the future holds. 

Let me put it this way: Cancer reminds us of the uncertainty of tomorrow. Cancer is not only emotionally and physically draining; it can also exhaust the financial resources of patients and their families. In some cases, the financial aspect determines who survives.  

In spite of it all, the good news is that advances in medical care mean there are more cancer survivors than ever, and the number keeps increasing.  

It is important that our health care system makes sure that this growing population is not penalized by their particular medical history. Having or surviving cancer is becoming a health disparity issue where patients with fewer financial resources struggle more.  

Another issue is a decrease in the political will to press on for a cure to cancer.  Congress cut $33 million from the 2006 budget of the National Cancer Institute and the Bush administration is asking for another $40 million cut for 2007. That is a disturbing step, as cancer is on track to become the number one killer ahead of cardiovascular disease.  

In a joint publication with the LAF and the Department of Health and Human Services, the CDC drafted a national action plan for cancer survivorship. In that publication, it is acknowledged that “although many public health initiatives address early detection, prevention, and control of cancer, public health is new to the cancer survivorship arena.”  

And as a cancer survivor and public health practitioner, I agree with that statement and can see that so much needs to be done in this arena.  

The report defines cancer survivors as “those people who have been diagnosed with cancer and the people in their lives who are affected by their diagnosis, including family members, friends, and caregivers.” 

The group includes those undergoing treatment as well as those who have completed it.  

Responding to the survivorship issue, the Foundation, named for cancer survivor and champion cyclist, Lance Armstrong, invited delegates from across the country to the inaugural Livestrong Summit.  

The number included 700 delegates from 49 states, Canada and Costa Rica, representing 44 types of cancer. South Carolina was represented by 16 delegates, including survivors, family caregivers, and health care providers.  

The summit was opened by ordinary cancer survivors telling their stories and joined by Armstrong himself. He went on to set the tone: "We're a nation of 10 million cancer survivors, we believe in life — LIVESTRONG!"  

Former U.S. Surgeon General Antonia Novello was among several speakers. She pointed out the disparity issue associated with cancer and urged equal access to clinical trials regardless of race and/or socioeconomic status. She also urged additional research and improving communication between physicians and patients.  

She was followed by author Jim Collins who talked about strategies to advocate effectively. Among these strategies are unity, focus, and discipline. All of these strategies are embodied by the LAF.  

As the first day of the summit ended, more than 200 delegates were invited to the Austin City Limits Studio for a town hall meeting with Armstrong, CNN's Dr. Sanjay Gupta and six other experts on "The State of Cancer in America."  The show is scheduled to air on CNN Jan. 13-14, 2007. 

Dr. LaSalle Befall, chair of the President’s Cancer Panel, emphasized the need to find a cure. He was echoed by Mike Milken, former Wall Street financier and chairman of FasterCures, who urged the cooperation of other nations in the search for a cure for cancer. 

On the second day, delegates worked in small groups to identify unmet needs of cancer survivors. Hearing the stories of others was as powerful as any academic training. 

The delegates identified a list of unmet needs of cancer survivors:

 ·         Poor/incomplete patient information

 ·         Working with the health care team,

 ·         Insurance and financial issues,

 ·         Lack of appropriate support for the patient,

 ·         Patient ability to support his/her family,

 ·         Addressing emotional issues,

 ·         Empowering survivor to advocate for themselves.

 The group sessions were followed by brainstorming for possible solutions. One of the most significant was eliminating cancer as a pre-existing condition in insurance coverage. The proposal was received with a three-minute standing ovation.  

Sen. John Kerry and Elizabeth Edwards, cancer survivor, author, and wife of Kerry’s vice presidential running-mate John Edwards, spoke on the last day. 

Kerry, a prostate cancer survivor who lost his  father to the same disease, said one thing that cancer will do to people is to make them unwilling to play games or accept hypocrisy. “With our lives on the line, we want answers, and we want them now,” he said. 

Each delegate was asked to come up with a personal project to be implemented in his or her community. A copy of each project draft was returned to the LAF which will keep track of the delegates and help them to accomplish their projects. 

“We All Count,” a support and advocacy group for people living with advanced cancer in the Columbia area is my project. It will start with the recruitment of its first members and as a group we will define our goals, objectives, and activities.  

The inaugural Livestrong Summit was a complete success. Delegates left feeling part of the Livestrong Army and, as Lance Armstrong likes to say, “determined to make a difference in their own way, big or small.”  

We all embraced the LAF manifesto: “We believe in life…We believe in energy… We believe in focus … Unity is strength ... Knowledge is power … Attitude is everything … We’re about the fight.”