Disease activists come in all shapes, sizes… and temperaments. There are genial fund-raising walkers, chained-to-the-courthouse protestors and every passion in between. The Spring 2012 edition (.pdf) of the Stanford Cancer Institute News features an interview with two activists: breast cancer survivors whose brand of advocacy is helping shape the search for a cure.

Susie Brain and Joan Venticinque are trained research advocates who partner with – and occasionally prod – the scientists and physicians developing new breast cancer treatments. Among the thoughts they shared during our Q&A:

Q: In what ways can advocates influence research?

Susie: Simply stated, we help provide a “face” to the disease and remind researchers of the human element. We provide input and strengthen research projects, assist in clinical trial design – including development of patient materials – and we facilitate community outreach and education.

Joan: As patient advocates we bring a sense of urgency and context to the work of the researchers. We are the voice of the patient in studies and in clinical trial design. We have firsthand experience living with cancer and its treatments, so we are able to offer them perspectives they may not otherwise hear.

My surgical scars remind me everyday why I am an advocate and why working in research is important.

Previously: Surviving is just half the battle: More on Stanford’s new survivorship clinic and Wellness after cancer: Stanford opens clinic to address survivors’ needs
Photo by Steve Gladfelter

Last week, Governor Jerry Brown signed legislation that will make California the first state to prohibit all minors from using commercial ultraviolet tanning beds. The anti-skin cancer bill was championed by California State Senator Ted Lieu (D-Torrance), who recently answered a few questions for Scope.

How did you become involved in the indoor tanning issue?

I have always been concerned about public health. My brother-in-law is a doctor and my brother is a radiologist (he did his residency at Stanford). The correlation between tanning and skin cancer rates motivated me to introduce the same bill in 2007, but it failed. Since 2007, however, the number of studies showing the lethality of indoor tanning beds has continued to grow, even supporting direct causation between indoor UV tanning and cancer. That’s why numerous health organizations, including the American Academy of Pediatrics, recommended that government ban tanning beds for everyone under 18.

Did any Stanford studies or other medical research aid in the enactment of this law?

Absolutely! The recent study on rising skin cancer incidence among young Californian women was very helpful, as were the letters that Stanford researchers wrote to Governor Brown. The study from Stanford researchers and collaborators helped show that skin cancer was not just an abstract problem, but a real and rising health concern in California.

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Tanning beds will soon be for adults only in California. On Sunday, Governor Jerry Brown signed SB 746, a bill that makes our state the first in the nation to ban all minors from using indoor UV tanning beds. The new law, originally sponsored by State Senator Ted Lieu (D-Torrance), takes effect on January 1, 2012.

The World Health Organization classifies tanning beds as a “level 1 carcinogen,” the same as cigarettes… and plutonium. Several European countries, including England and France, currently restrict tanning beds to adults, and Brazil has banned them entirely.

SB 746 was supported by numerous medical societies and health groups, including the California Society of Dermatology & Dermatological Surgery, the California Medical Association, the American Academy of Pediatrics, Anthem Blue Cross and Kaiser Permanente. The bill also received scientific support from researchers at Stanford, the Cancer Prevention Institute of California, and UCSF, whose recent study found the rate of melanoma has more than doubled among Californian girls and women aged 15 to 39 in high socioeconomic areas.

“Indoor tanning is especially harmful because of the intense and dangerous type of UV rays emitted from the tanning beds,” Lieu recently commented in a release. “Moreover the skin damage is cumulative, so the more exposure one gets younger in life, the worse the harmful effects will be.”

Previously: A push to keep minors away from tanning beds
Photo by Travel Salem

Michael Claeys is a writer in the Stanford Cancer Institute.

Are indoor tanning beds contributing to increasing rates of melanoma? Some experts and policy-makers believe so, and California State Senator Ted Lieu (D-Torrance) held a press conference in Los Angeles today to promote legislation that would ban minors in the state from using tanning booths. Lieu cites strong scientific support for his bill, including a recent study from researchers at Stanford, the Cancer Prevention Institute of California, and UCSF that shows the rate of melanoma has more than doubled among Californian girls and women aged 15 to 39 in high socioeconomic areas.

“This important study illustrates the dramatic rise in deadly melanoma among young Californian women,” Lieu said yesterday in a release. “Other scientific research has shown conclusively that use of tanning beds causes skin cancer, and the younger kids are when they start using tanning beds, the greater the cumulative damage to their skin and the more likely they are to die of skin cancer.” 

The legislation, Senate Bill 746, was approved by the California legislature and has moved to Governor Jerry Brown’s office for final consideration. Susan Swetter, MD, a Stanford professor of dermatology and study co-author, is a strong supporter of the bill and shared with me a letter she wrote to the governor:

I urge you to sign California SB 746 into law to ban the use of indoor tanning devices by minors. I have directed Stanford’s melanoma program since 1996 and have seen an increasing number of young adults diagnosed with melanoma, many with a history of excessive ultraviolet (UV) exposure via natural sunlight and indoor tanning bed use (“artificial” UV radiation). A multitude of epidemiologic studies worldwide have confirmed that tanning bed use is directly linked to melanoma development, and a Food and Drug Administration review of the safety of indoor tanning conducted in March 2010 concluded that as much a 25% of all melanoma in the world may be caused by tanning bed exposure.

The indoor tanning industry preys on young women, and adolescent girls between the ages of 14-18 are the primary target of advertising campaigns. It is imperative that California join other states in restricting access to indoor tanning devices for minors as a key step in reducing skin cancer incidence and mortality. Please sign this critical public health legislation into law, to make California the first state in the nation to enact a ban on tanning for minors.

Governor Brown has until October 9 to act on SB 746.

Previously: Intense, rapid sun tanning may increase skin cancer risk
Photo by Evil Erin

Michael Claeys is a writer in the Stanford Cancer Institute.