Legislative Watch
One Fewer Excuse To Not Have Genetic Testing

People who inherit a genetic mutation, such as BRCA1 and BRCA2 for breast and ovarian cancers, or other familial syndromes, such as hereditary nonpolyposis colorectal cancer, that predispose them to cancer are now protected from genetic discrimination regarding health insurance coverage and employment. The Genetic Information Nondiscrimination Act (GINA) of 2007 passed the House in April by a 420-3 vote and will likely be passed by the Senate later this year.

Protection against genetic discrimination exists in a number of laws, including HIPAA and the Americans with Disabilities Act, but GINA clarifies and extends those rights.

Reports of genetic discrimination are rare, but Republican Senator Olympia Snowe of Maine, who has led efforts to protect people from genetic discrimination for more than a decade, calls the bill a proactive measure to prevent widespread discrimination in the future. GINA prohibits health insurance companies from denying coverage or charging higher premiums to someone who is healthy but may have a genetic mutation that makes them susceptible to a disease. It also prohibits an employer from using that information in hiring, firing, or promotion decisions.

While genetic tests are currently available to determine susceptibility to breast, colorectal, or kidney cancer, surveys suggest some people don’t take advantage of them for fear of genetic discrimination regarding health insurance and employment. Lawmakers hope the legislation will remove that fear and encourage genetic testing among those who want it.

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The Place to Be
Living Fully with and Beyond Cancer

The Anderson Network at M.D. Anderson Cancer Center in Houston hosts Living Fully with and Beyond Cancer, its annual conference for cancer patients and caregivers. The weekend program, to be held September 6-8, will feature sessions on exercise, treatment side effects, caregiving issues, and many other topics. For details, visit www.mdanderson.org/departments/andersonnet.

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People Report
Politics & Cancer

Photo by Kreutz Photography

As the 2008 presidential race gears up, a number of survivors in the political limelight have gone public. Elizabeth Edwards, 57, wife of Democratic presidential candidate John Edwards, first revealed her breast cancer diagnosis shortly after the 2004 presidential election. Less than four years later, the Edwardses held a press conference in March to announce her cancer was back, and had spread to her bones. The couple announced John would continue the presidential race, a decision that sparked debate among survivors, as well as the general public and political pundits.

Less than a week after the Edwardses’ disclosure, White House press secretary Tony Snow announced his colon cancer had returned and spread to his liver. Five weeks after surgery, the 51-year-old returned to his job and is now undergoing chemotherapy. Snow, who was a teenager when his 38-year-old mother died of colon cancer, was first diagnosed in 2005.

Also on the political front, Republican presidential candidates Rudy Giuliani and John McCain are survivors of prostate cancer and melanoma, respectively. And former Republican Senator and Law and Order actor Fred Thompson, who is now considering entering the presidential race, disclosed in April that he’s a two-year lymphoma survivor.

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Prevention
More Data on HPV Vaccines

Cervarix^® joins Gardasil^® to become the second vaccine to show protection against two types of cervical cancer-causing human papillomavirus. HPV types 16 and 18 are responsible for about 70 percent of all cervical cancers, and Cervarix may also protect against types 31 and 45, which account for another 10 percent of all cervical cancers. About 10 other strains of the virus can also cause the disease, which affects 11,000 American women each year.

For the 1,113 women ages 15 to 25 who were vaccinated in a phase II study with either three doses of Cervarix or placebo, the vaccine offered protection for more than five years and demonstrated 100 percent efficacy in precancers caused by types 16 and 18 as well as 68 percent efficacy against cervical precancerous lesions and 38 percent benefit against abnormal Pap tests, regardless of HPV type. The Food and Drug Administration is currently reviewing GlaxoSmithKline’s Cervarix for approval.

Merck, maker of Gardasil (the only vaccine currently approved to prevent cervical cancer), is now seeking an additional approval from the FDA for its vaccine based on new data that show it is effective in preventing vaginal and vulvar cancers. Two phase II studies published in the May 10 issue of the New England Journal of Medicine report Gardasil is 100 percent effective in preventing vulvar and vaginal precancer and genital warts caused by HPV types 6, 11, 16, and 18.

The trials found near-perfect efficacy (98 to 100 percent) for at least three years against cervical precancerous lesions related to HPV types 16 and 18 in women with no prior exposure to those two strains. Gardasil provided only slight protection in women infected with at least one cancer-causing strain of HPV, which led some researchers to theorize other cancer-causing strains of the virus may be filling the gap left open by types 16 and 18. These results stress the importance of vaccination before HPV exposure.

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House Call
Q&A: Anemia Drugs

Q: Should I be concerned about the recent news regarding serious side effects resulting from chemotherapy-related anemia drugs?

A: During active cancer treatment, the primary use of erythropoietin drugs, or EPO—namely Procrit^® (epoetin alfa) and Aranesp^® (darbepoetin alfa)—is to increase red blood cells in anemic patients, resulting in fewer blood transfusions, less fatigue, and improved quality of life for some patients. More recently, oncologists use EPO drugs to raise red blood cell counts in patients who have chronic anemia related to their cancers, but who are not in active treatment.

The critical difference in these two situations is reason for concern. For patients receiving active chemotherapy, EPO drugs have proven benefit based on research studies. The other use—treating anemic cancer patients who are not on chemotherapy—has not been supported by similar extensive research. Their use in this circumstance is considered off-label, meaning the use is not firmly supported by scientific evidence.

Several studies recently called into question the value of these drugs in the off-label situation. Not only did the drugs not help these patients, some studies showed they resulted in increased harm, particularly blood clots, and decreased survival in certain groups. As a result, the Food and Drug Administration, in consultation with each drug’s maker, determined a “black box” warning should be placed on the drugs’ labels, signifying serious side effects, and doctors should be cautious when prescribing them. (See “The End Is Just the Beginning”.)

Amgen and Johnson & Johnson agreed to halt their direct-to-consumer advertising until more is known after a request was made by a congressional committee in March. The FDA held a hearing in May to review data and recommended further restrictions on these drugs, including possible bans on use in certain patient populations.

Previously the most popular and most costly cancer-related supportive care drugs, 2006 sales for Aranesp reached $4.1 billion plus $3.2 billion for Procrit. Since doctors became aware of the problems, the use of EPO drugs in treating cancer-related anemia has decreased considerably.

Doctors still use EPO drugs to boost red blood cell counts in patients receiving chemotherapy, since the drugs are effective in this population. However, it’s now recommended that the target blood count be lower with a goal of avoiding transfusions or severe anemia, not to get counts to a normal level. The excessive use of these drugs should not overshadow the real value they provide patients when used appropriately.

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

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Childhood Cancer [web exclusive]
Laying the Foundation for Better Bone Health

Typical in patients with metastatic disease or bone cancer, reduced bone health because of cancer or its treatment is a well-known side effect. Now researchers are discovering childhood cancer patients may also have a higher risk of weakened bones and osteoporosis later on in life. A report published in the April 1 issue of Cancer described how treatments such as radiation and certain types of chemotherapy increase these risks for young cancer patients.

Because bone tissue is in constant flux with cells that build up bone tissue, called osteoblasts, and cells that tear it down, called osteoclasts, this delicate balance can be easily disrupted. Much of a person’s bone mass accumulates in adolescence and lays the foundation for future bone health. If the body can’t reach its peak bone mass during this time, it can lead to greater health problems later in life.

Previous studies have found that childhood cancer survivors have a greater risk of reduced bone mineral density. One small study published last year found that osteopenia, a precursor to osteoporosis, was found in two-thirds of brain tumor and acute lymphoblastic leukemia patients treated with radiation to the head compared with 27 percent of patients who did not have radiation. The latest results of the Childhood Cancer Survivor Study, which followed 10,000 childhood cancer survivors treated in the 1970s and 1980s, show many survivors are at risk for chronic illnesses, but osteoporosis may be an under-reported late effect.

Therapies proven to impact bone tissue include corticosteroids and methotrexate, as well as radiation to the head, which can cause reduced growth hormone secretion. Reduced physical activity, which is common in survivors undergoing active treatment, further contributes to bone loss as well as nutritional deficiencies. Certain cancers, such as acute lymphoblastic leukemia, brain cancer, bone cancer, and lymphomas also cause bone loss.

Authors of the Cancer report, Alessandra Sala, MD, PhD, and Ronald D. Barr, MD, both of McMaster University in Hamilton, Ontario, call for greater importance to be placed on physical exercise in these patients to help build bone mineral density, as well as meeting dietary intake of vitamin D and calcium. Drs. Sala and Barr also recommend using bisphosphonates, a class of drugs that strengthen bone by inhibiting the ability of osteoclasts to break down bone tissue, while increasing osteoblast activity. Bisphosphonates are used to prevent osteoporosis and are commonly given to patients with multiple myeloma and metastatic breast cancer to increase bone density and help protect against fractures and breaks.

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Destination [web exclusive]
Sunstone Cancer Support Centers

Outside Tucson, Arizona, lies Sunstone Cancer Support Centers, a 14-acre self-proclaimed “oasis in the desert.” Sunstone is home to year-round retreats for patients and survivors, including The Healing Power of Forgiveness on September 13-16. The retreats range in length, from one day to one week, and age group, from teens to adults. Known for its emphasis on integrative healing, Sunstone offers acupuncture, yoga, and tai chi. Free to participants, Sunstone asks for a $150 fee to reserve space in a program, but participants can either request a refund or donate back to the organization at the end of the program. For details, go to www.sunstonehealing.org.

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On the Web
www.re-mission.net

Teens and young adults fighting cancer can now really battle the disease with Re-Mission, a video game that pits a robot called Roxxi against cancer cells and bacterial infections, while dealing with side effects at a microscopic level within the bodies of fictional patients. HopeLab, a nonprofit focused on children with chronic illnesses, developed the video game with game developers, animators, psychologists, and scientists. Re-Mission is available free at www.re-mission.net. The website also offers an online community for teens and young adults with cancer.

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Bookshelf
Slapped Awake:

Living With Breast Cancer: A Journey in Poetry and Prose
By Deborah Lang Hampton

Westview Book Publishing, Inc., 2007

Deborah Lang Hampton says her book conveys the emotional landscape of living the mets and tests and blessings as she settled into the first generation of survivors living with metastatic disease who have a lot to share about the process of “being aware of dying and fully engaged in living.”

Hampton, the daughter of a cancer survivor, followed her breasts carefully with mammography and self-exams. She wasn’t supposed to get breast cancer, she says. But there it was at age 42 in 1994.

After chemotherapy and surgery she became involved with Y-ME National Breast Cancer Organization as a staff member. Reconstruction in 1997 was followed by an invitation to serve on the Scientific Peer Review Panel for Department of Defense funds earmarked for breast cancer. Then, in 1999, a mass found under her newly reconstructed right breast was removed. She began chemotherapy again.

From this point forward, Hampton talks about living with cancer and making it a part of her life as she tries to be a mother and partner while going through multiple remissions and treatments. Hampton captures difficult subjects with honest, forthright talk. She talks about facing death, which some days she thinks will be from breast cancer, while other days she doesn’t.

For women living with cancer, this book helps. It answers the question: How will I go on if it comes back? You will do it like Hampton has—one day at a time with poetry and love and goodwill. —Kathy LaTour

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The Advocate
Jimmy Fowkes: Bald and Biking

	Left to Right: Jackson Maynes, Jimmy Fowkes, Calvin Bump, Alex Junquera, and Willie Milam show off their bald heads.

When 14-year-old Jimmy Fowkes was diagnosed in January 2006 with medulloblastoma, a type of brain tumor, the weeks of headaches and vomiting finally made sense. The doctor told Jimmy’s father to pack a bag and take Jimmy to the hospital immediately, where he would have surgery the next morning. Several months of chemotherapy and radiation awaited Jimmy.

To give him a goal through treatment, Jimmy’s father, Dan, signed them both up for the Lance Armstrong Foundation’s LIVESTRONG Challenge in Portland. To help raise the minimum donation to participate, Jimmy sent out e-mails and donation forms to friends, family, and his medical team. More than 200 people helped Jimmy surpass his goal, raising more than $31,000 to become Portland’s top fundraiser. “I was really surprised,” he says. “I thought I might not even raise the $500 minimum, and my dad would just pay for both of us to ride it.”

While fundraising took a lot of work, getting on his dad’s bike and training for the 40-mile ride after surgery was more challenging. Margo, Jimmy’s mother, recalls that after more than a week in intensive care after brain surgery, Jimmy was barely able to walk down the hall. His first time back on a bike after surgery, he crashed within 100 yards because his equilibrium was still impaired.

Seven months after his diagnosis and between chemotherapy rounds, Jimmy completed the 40-mile ride in July 2006.

Jimmy also involved his friends and classmates in his cancer journey and philanthropy. When his hair began falling out because of radiation, Jimmy invited friends over to his house for a headshaving party. He asked them to each make a donation or bring a new toy to give to the Child Life program at Jimmy’s hospital.

In the end, Jimmy’s friends donated about $2,500 in cash and toys, and 30 went bald. “We had pizza, hung out, got our heads shaved, and played basketball,” Jimmy says. “None of my friends that are girls would shave their heads, though.”

Jimmy finished treatment in March and has set a goal of 70 miles and $50,000 for the 2007 LIVESTRONG Challenge. He also inspired a team called Friends of Jimmy Fowkes to raise money and ride in the Challenge.

“It shows people who don’t have cancer that they can still make a difference and help,” he says. “And people with cancer, it shows them that it’s possible to get back into shape and do all the things you want to do.”

Do you know a patient, survivor or caregiver we should highlight in The Advocate? If so, e-mail your nomination to editor@curetoday.com.

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