Research can be slow and purposely deliberate. Investigating cancer can take many years to gather data, prove hypotheses, develop treatments and find cures.

But while many scientists tackle that important work, UC-run programs — funded by donations from California taxpayers — are making sure that cancer research involves and informs the community, especially groups vulnerable to a hard-hitting disease that won’t quickly go away.

Yearly contributions from tax filers — many in modest dollar amounts — benefit the UC-administered Tobacco-Related Disease Research Program (TRDRP) and the California Breast Cancer Research Program (CBRP).

Line 413 for tobacco-related cancer awareness, prevention

Last year, more than 31,000 people checked line 413 at the end of their state income tax forms and donated an average of nearly $14 to the California Cancer Research Fund. Those contributions now fund a statewide project to deliver culturally-sensitive cancer awareness and prevention information to groups that are constantly bombarded by tobacco industry marketing. The project was conceived and is administered by UC’s Tobacco-Related Disease Research Program.

“Many people are still shocked to hear that tobacco-related illnesses and cancer are the No.1 killer of African Americans,” said Carol McGruder, who is co-chair of the African American Tobacco Control Leadership Council (AATCLC), a researcher and San Francisco activist fighting the pervasive effects of tobacco in the community.

She notes that while smoking in California has plummeted to under 12 percent — the second lowest rate in the nation only to Utah — the rate among African Americans may be as high as 30 percent, according to some community-based studies. McGruder also points out that billboards for tobacco products are placed in African American communities at a rate four to five times greater than in white neighborhoods, and products such as menthol cigarettes are targeted specifically at African Americans, especially young people.

McGruder is part of a collaborative project, Alliance for Data dissemination to achieve Equity for Priority Populations on Tobacco (ADEPT). ADEPT is one of many projects funded by the Tobacco Related Disease Research Program, which administers a variety of innovative research grants in biomedical science, addiction, policy, regulatory and environmental science and health disparities in California, ADEPT is funded exclusively and solely from the cancer research fund from taxpayers’ line 413 contributions.

The LGBT community is another that suffers from high rates of smoking — more than double the general population, and lesbians smoke at a rate triple of that of all women, according to studies. “Tobacco is one of the leading preventable causes of death among LGBTs, if not the leading cause,” said Naphtali Offen, a UCSF research associate and co-founder of the Coalition of Lavender Americans on Smoking and Health (CLASH), an ADEPT partner.

Offen’s research at UCSF has documented how the tobacco industry has targeted LGBTs since the early 1990s with ads in gay media glamorizing smoking and sponsorship of events, especially those that provided AIDS and health-related services to the community. CLASH has worked to undo ties between the tobacco industry and LGBT community leaders and event organizers. And now that it is part of the tax-funded collaborative, it will expand its efforts as one of California’s leading resources for smoking cessation support, provider training and multifaceted education around LGBT tobacco use.

Other community partners in ADEPT will address tobacco-related health disparities including cancer disparities and reach out to American Indian/Alaskan natives, Asian Americans, native Hawaiians and Pacific Islanders, Hispanics and Latinos and low socioeconomic status populations.

While each partner will develop culture-specific programs and materials aimed at their groups, all will learn from each other about effective means of delivering cancer and health awareness information, whether its via social media, ads in ethnic newspapers or neighborhood forums, said Rod Lew, principal investigator for ADEPT and executive director of the Asian Partners for Empowerment, Advocacy and Leadership.

A key part of the effort will be training community and tobacco control leaders throughout the state to disseminate key health and research information to these various populations, said Lew.

Line 405 for breast cancer

Donations from line 405 of the state tax forms have funded nearly $10 million in research grants aimed at identifying environmental factors that may cause breast cancer, developing therapies to block the cancer from spreading, exploring natural products that may thwart the disease, and improving support networks to help patients and families navigate a sometimes daunting health care system.

CBCRP is renowned not only for its innovative research, but also for engaging community organizations in its studies. One project funded by 405 tax check-off contributions teamed researchers and the Asian Health Services in Oakland to look at breast cancer risks in nail salon workers, mostly Vietnamese women, who are overly exposed to chemicals in the polish and products that they breathe and touch. (See above video).

“I’m impressed by CBCRP’s research strategy  that requires a balanced partnership between researchers and community representatives so that the community can see the direct benefits of the research sooner than later,” said Thu Quach, a scientist at the Cancer Prevention Institute of California and a leader in the study of nail salon workers.

Research guides policymakers, too

Advocates and researchers in the ADEPT collaborative extend their education efforts beyond their communities. The African American Tobacco Control Leadership Council, for example, has been urging the FDA to ban menthol-flavored cigarettes. The group has presented research to the FDA’s Tobacco Products Scientific Advisory Committee showing that as many as 80 percent of African American smokers use menthol cigarettes and those cigarettes tend to hook youth into the unhealthy habit.

Other ADEPT groups have targeted cigarillos, little cigars whose popularity and sales have increased in recent years. The product is not regulated by the FDA and not subject to the same taxes as cigarettes.

On the breast cancer side, research results of the check-off-funded nail salon worker study have helped inform public policy, said Quach. This includes reintroduction of the Federal Safe Cosmetic Act of 2011 to ban toxic compounds, require premarket safety testing and provide greater regulatory authority to the FDA to oversee cosmetic manufacturers.

Some CBCRP and state tax check-off studies are designed specifically to inform policymakers. Joy Melnikow, a family and community medicine professor and director of the Center for Healthcare Policy and Research at UC Davis, received a grant last year to analyze a tool that policymakers and others can use to consider impacts of various options on future health program benefits and costs. Such a tool — a user-friendly computer interface — is important as breast cancer screening and health programs for underserved women in California are faced with increasing need for services and shrinking budgets.

“While this project is specific to a breast cancer screening program for underserved women in California, if it is successful, a similar approach could be used for other breast cancer screening programs and policy decisions,” said Melnikow. “We hope that policy decisions informed by evidence will lead to better outcomes for women.

“The California Breast Cancer Research Program, funded through tax check-off contributions, supports our project and other research, all of which have as their ultimate goal better care and outcomes for women with breast cancer,” she said.