Legislative Watch
Texans to Vote on $3 Billion Cancer Research Initiative

A proposition on this November’s ballot in Texas will involve ear-marking $3 billion over the next 10 years to fund cancer research in Texas. The Texas Legislature passed the landmark bill in May that would create the Cancer Prevention and Research Institute of Texas to dole out dollars for cancer research throughout the state.

Austin resident and cancer advocate Lance Armstrong championed the bill and testified in front of lawmakers about his and his family’s experiences with cancer. “This is one of the proudest days of my life as a Texan,” Armstrong said in a statement. “I am confident that the people of Texas will overwhelmingly choose to make Texas a worldwide leader in cancer prevention and research.”

State-funded research is now becoming the norm as the national budget for cancer research has been shrinking in recent years. Some states, such as California with its Cancer Research Program, have already enacted legislation to provide cancer funds. North Carolina legislators stepped up their cancer efforts before adjourning in August with a vote to invest $50 million annually by 2009 for cancer research directed at the Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill.

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The Place to Be
Colorectal Cancer Conference

The Colon Cancer Alliance will host the 7th Annual Colorectal Cancer Conference in Baltimore on October 12-14. The program offers opportunities to learn about treatment, nutrition, side effects, new advances, and advocacy. Details at www.ccalliance.org/events, or call 954-341-0212.

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People Report
Presidential Candidates Talk Cancer

Photo by Paul Peterson, Courtesy of the Lance Armstrong Foundation

Lance Armstrong took a new step in his initiative to unite citizens, government officials, and cancer organizations to make cancer a national priority in the 2008 presidential election with the LIVESTRONG Presidential Cancer Forums (www.livestrong.org). Armstrong and Chris Matthews, host of MSNBC’s “Hardball with Chris Matthews,” co-moderated the Democratic and Republican forums, held August 27 and 28, respectively. Democratic candidates Hillary Clinton, John Edwards, Bill Richardson, and Dennis Kucinich, and Republican candidates Sam Brownback and Mike Huckabee gathered in Cedar Rapids, Iowa, to discuss their plans for fighting cancer. During a July appearance on “Hardball,” Armstrong told Matthews, “For me, this is the true meaning of war and terror. And something that claims nearly 600,000 Americans a year is something that we ought to discuss.”

ABC’s “Good Morning America” anchor Robin Roberts, 46, was diagnosed with early-stage breast cancer in July. Roberts said she discovered the lump the same day she reported on the death of film critic Joel Siegel, who died at age 63 after a 10-year battle with colon cancer. Siegel, whose first wife died of brain cancer, helped found Gilda’s Club in 1991 with Gene Wilder.

Two opera greats, Beverly Sills and Luciano Pavarotti, died of cancer in recent months. After a lung cancer diagnosis in May, Brooklyn-born soprano Beverly Sills died on July 2 at age 78. Legendary Italian tenor Pavarotti died of pancreatic cancer on September 6 at age 71. Pavarotti was in the middle of his farewell tour when he was diagnosed in July 2006.

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Prevention
Massive Research Study Under Way

Half a million is the number of people the American Cancer Society plans to enroll within the next five years in its third Cancer Prevention Study, or CPS-3. The goal of the Cancer Prevention Studies— the first of which dates back to 1959—is to examine lifestyle, behavioral, environmental, and genetic factors that may play a role in preventing or initiating cancer. Previous studies helped identify the link between tobacco smoke and lung cancer and the connection between physical activity and lower risk of some cancers, including breast and colon.

Participants must be between 30 and 65 years old with no history of cancer. Informed consent, waist measurements, a survey, and a blood sample are required at enrollment, which will take place at various Relay for Life events around the country. Participants will be tracked for at least the next two decades through mailed questionnaires. For more information on CPS-3, visit www.cancer.org.

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House Call
Q&A: Prostate Cancer Vaccine

Q: Why is Provenge still not available for terminally ill prostate cancer patients?

A: When the Food and Drug Administration withheld approval in May on a cancer vaccine for treating advanced prostate cancer, it highlighted once again the question of whether terminally ill patients should have access to medications that may be effective, but have not yet met the usual criteria for approval. The vaccine, Provenge (sipuleucel-T), is designed to treat advanced prostate cancer that is no longer responsive to hormonal therapy.

In a nutshell, a clinical trial intended to demonstrate Provenge’s usefulness in the treatment of advanced prostate cancer did not meet its goal of prolonging the time to tumor progression. Subsequently, on an unplanned re-analysis, Dendreon, maker of the vaccine, concluded there was some information in that “failed” trial that suggested the vaccine may have actually increased the lifespan of the men who received the vaccine.

Results of the clinical trial were presented to an FDA advisory committee in March, which voted to recommend approval of the vaccine, 13 to 4. Advisory committee members who voted against recommending approval contend the vaccine had not met the FDA standards for approval.

So now, the FDA awaits results from an ongoing, more definitive clinical trial that will hopefully determine if the vaccine improves the survival of men with advanced prostate cancer. Interim results of the trial will be available in 2008, with final results in 2010.

But prostate cancer advocates were outraged at the FDA’s decision, saying many advanced prostate cancer patients can’t wait that long, and questioned why the agency would prevent terminally ill patients from receiving a vaccine when many of them have no other treatment alternatives. Advocates have approached Congress and the FDA, asking them to reverse the decision, but to date, they have not.

The issue of providing drugs that have not yet adequately demonstrated safety and efficacy is controversial, and contention will likely continue for some time, but there are other methods for getting nonapproved drugs. In some cases, a drug that has cleared most of the hurdles in proving effectiveness in treating a particular cancer can be made available to patients directly through the drug company in a process called compassionate use. Patients can also ask their physicians about participating in a clinical trial, where many new drugs are evaluated for cancer treatment.

The question of access to investigational drugs is an important one, and one that is currently being debated in multiple forums. When it comes to drug (or vaccine) approval, we must have the best evidence possible that the drug is effective as well as a valid understanding of its risks.

—Len Lichtenfeld, MD, is deputy chief medical officer of the American Cancer Society.

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Childhood Cancer
Diagnosis Delay

Experts stress the importance of catching cancer early at its most treatable stage. But in the childhood population, cancer is usually so rare that it’s often overlooked when a child initially has symptoms. The delay in diagnosis can be costly since most childhood cancers are considered fast-growing.

Researchers examined 23 studies conducted between 1976 and 2006 to find any underlying patterns that may contribute to delayed diagnosis, which included the time it took parents to take the child to a physician after symptoms appeared, and from the first health care visit to cancer diagnosis.

Findings of the study, published in August in the journal Cancer, found physician delays to be longer than parent delays in the majority of studies. Factors influencing time to diagnosis included the child’s age, parents’ education level, symptoms, cancer stage, the initial medical specialty consulted, and most significantly, the type of cancer. How those factors relate to prognosis and outcome remains unknown.

The analysis, concluded the authors, is the first step in developing new strategies and programs to shor ten the delay in diagnosis for childhood cancer patients.

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Destination
Bloch Cancer Survivors Parks

After H&R Block co-founder and lung cancer survivor Richard Bloch was declared cancer-free, he and his wife, Annette, pledged to provide hope to other cancer patients. Through the R.A. Bloch Cancer Foundation, they built the first Bloch Cancer Survivors Park in Kansas City, Missouri. Today, 22 parks stand in the midst of bustling cities across Canada and the United States, including Baltimore, Chicago, and San Diego. Each park has three elements that tie them together. All parks include a symbolic sculpture of life-size figures in a maze representing treatments and success, the “Positive Mental Attitude Walk,” and the “Road to Recovery.” The parks include a series of inspirational and instructional plaques. For a full listing of park locations, visit www.blochcancer.org.

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On the Web
www.slrfl.org

Image courtesy of American Cancer Society

Users from around the world logged into Second Life, a multiplayer 3-D Internet community where people create animated characters called avatars, and participated in the American Cancer Society’s third annual Second Life Relay for Life. Nearly 2,000 avatars participated in the overnight fundraising walk in July, raising over $100,000. The ACS also opened a virtual office to serve as an interactive cancer information resource center, a meeting space for peer support groups, and headquarters for in-world event planning.

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Bookshelf
50 Spiritual Classics:

Timeless Wisdom from 50 Great Books on Inner Discovery, Enlightenment & Purpose
By Tom Butler-Bowdon

Nicholas Brealey Publishing, 2005

For most people, a diagnosis of cancer brings with it a plethora of books from friends and family— books meant to help us understand the bomb that just exploded in our lives.

But the books stack up on the bedside table, overwhelming in their complexity and requiring a level of concentration we cannot maintain. We need to understand the philosophers whose wisdom fills the pages, but the stress of surgery, chemo, and the entire cancer milieu has shortened our attention span to the length of a short story compared with the novel we could once devour in a few days.

To the rescue comes 50 Spiritual Classics, the condensed version of 50 books by spiritual leaders and philosophers representing writing from a wide range of people beginning with St. Augustine in A.D. 400 to recent works such as The Purpose Driven Life in 2003.

Tom Butler-Bowdon doesn’t pretend to give the final word on any of the books, all of which have been analyzed by experts. Rather, Butler-Bowdon, a graduate of the London School of Economics who has his own self-development website, wants to help those who need a primer on these issues that will lead to further study.

OK, some may call it cheating your way to understanding the philosophy of life, but when you’ve just been diagnosed with cancer and feel like you no longer understand life or your place in it, there’s a need to identify quickly what helps and what doesn’t, and which books you might want to expend the energy to read. This book gives it to you in a nutshell and gets to the point about each of these books quickly. It is cheating a little, but we deserve it. —Kathy LaTour

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The Advocate [web exclusive]
JoAn Niceley

In the three years after her 2002 breast cancer diagnosis, JoAn Niceley, a hair stylist and wig specialist from Long Beach, Mississippi, was named Breast Cancer Survivor of the Year by the Memorial Hospital of Gulfport, and President George W. Bush recognized her volunteer work with the American Cancer Society’s Look Good … Feel Better program. If a survivor entered her salon needing a wig, she would try to get one for them, sometimes for free and usually out of her own pocket.

But in 2005, Hurricane Katrina hit the Gulf Coast. Many coastal Mississippi residents lost close to everything. “As Hurricane Katrina devastated the Mississippi Gulf Coast, everything came to a screeching halt,” Niceley says. “The one thing it did not stop was cancer.”

By then, Niceley was unable to afford to help everyone who entered her salon needing a wig. “Not only did they lose their wigs, they lost everything they owned,” Niceley says. “It just broke my heart.”

She placed a pink heart-shaped box at her styling station asking for donations to help purchase wigs for cancer patients—the beginning of Pink Heart Funds.

To further raise money for survivor wigs, Niceley dedicated herself to writing a cookbook and her own personal survivor story. A few months after Katrina, just as Niceley completed her cookbook, she met Michele Hirata, who had lost her mother to breast cancer. Hirata, a designer of handmade head covers given free to cancer patients, joined Niceley to become co-founder of Pink Heart Funds. 

“She gave me a front page in her cookbook after knowing me one week,” Hirata says. “This lady’s got a huge heart.” The cookbook, Appetite for Living: Pink Ribbon Recipes, sold more than 2,300 copies in four months.

Niceley and Hirata held a Hearts with Hope festival in May, which raised more than $6,000 and inspired 18 people to donate their hair to a popular organization providing wigs to children. After the festival three children with cancer approached Niceley needing a wig because the other organization had turned them down because their hair loss was not considered long-term or permanent.

In response, Niceley and Hirata created their own hair donation program, the Pony Tail Club, as another branch of Pink Heart Funds. The organization provides free wigs for children without insurance regardless of what caused the hair loss. If insurance covers a wig, Pink Heart Funds will help fill out the paperwork.

“It is most devastating to lose your hair,” Niceley says. “I know from my own experience from cancer, and having hair as soon as you lose it is an important factor in your recovery. Hair is part of your well-being and self-esteem.”

The first official Pink Heart Funds fundraiser was held on the second anniversary of Hurricane Katrina, raising more than $14,000. Coastal native Robin Roberts, 46, a host of “Good Morning America,” spoke at the August 29 event. “You’ve met JoAn, you don’t say ‘no’ to JoAn,” Roberts told the sold-out crowd, speaking for the first time about her recent breast cancer diagnosis.

“Her passion and her heart is so much a part of the Pink Heart Funds,” Roberts said. “And when I first met her and she told me of this group and I felt her passion, I wanted to very much be a part of something and to do something to help because I am also someone who lives by the heart.”

The organization (www.pinkheartfunds.com) provides wigs and breast prostheses, as well as resources and a hotline for callers seeking support or advice. —Lacey Meyer

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