New report offers proposals to reform nation’s financial safety net for senior citizens.

Carroll Estes, UC San Francisco

After a lifetime of lower wages and time out of the labor market for caregiving, women typically receive less from Social Security than men, with millions of widows and women of color falling into poverty in old age.

Now, in a significant new report led by a UC San Francisco social scientist, a team of leading advocates for women and senior citizens seeks to correct the inequities through sweeping proposals to reform the nation’s financial safety net for senior citizens.

The report will be unveiled at a Congressional briefing Friday, May 11, at 9:30 a.m. (ET) in Washington, D.C.

The authors represent three national organizations for seniors and women: the National Committee to Preserve Social Security & Medicare Foundation, the National Organization for Women Foundation (NOW), and the Institute for Women’s Policy Research.

“This is an urgent call for our retirement system to catch up with the changing needs of women,’’ said the lead author of the report, Carroll L. Estes, Ph.D., founder and former director of the UCSF Institute for Health & Aging. She is the chair of the board of directors of the National Committee to Preserve Social Security & Medicare and its foundation.

“Social Security is crucial to the future of our children and grandchildren,’’ Estes said. “It is there for Americans when catastrophic events befall them, such as 9/11 when about 2,600 children lost a working parent. We must keep the social contract that it represents, and improve the lives of women and other workers who have paid into Social Security for decades.’’

The report, “Breaking the Social Security Glass Ceiling: A Proposal to Modernize Women’s Benefits,’’ examines the changing role of women in the workforce as well as the smaller incomes women receive in retirement as a result of lower wages on average and time spent out of the labor market for unpaid caregiving of children and aging parents. Retired women of color are particularly vulnerable, experiencing two to three times the poverty rates of whites.

Along with a slate of reforms earmarked at women, the report calls for dramatic changes in Social Security benefits for children and for same sex couples.

The proposals include:

• Improve survivor benefits to be 75 percent of a couple’s combined benefits;
• Provide Social Security credits for caregivers;
• Restore student benefits for children up to age 22;
• Equalize rules for disabled widows;
• Provide Social Security benefits to domestic partners and members of same-sex marriages, including the children of these relationships.

In the decades since the establishment of Social Security in 1935, women transformed the American workforce. Some broke through the rungs to reach the corporate board room, but far more found themselves in part-time positions, lower-levels jobs or entirely out of the workforce for periods as they juggled job and family.

On average, federal statistics show that women earn 19 percent less than men, leaving them with lower lifetime earnings and lower Social Security payments — $12,155 annually compared to $15,620 for men, according to 2009 data from the U.S. Social Security Administration. Additionally women – with longer life expectancies – are less likely to have employer pensions and more likely to outlive their retirement savings.

Even with monthly Social Security payments, 12 percent of older women and 15 percent of widows live in poverty, according to federal poverty statistics. The problem is even more acute for women of color: 26 percent of African American women 75 or older and on Social Security were living in poverty in 2009, while 21 percent of Hispanic women the same age were in the same plight, according to the Institute for Women’s Policy Research.

“For too many women, retirement is the culmination of an entire career…of pay and income inequality,’’ said the authors.

Noting their opposition to privatizing Social Security and to raising the retirement age, the authors said that for more than 20 million women aged 65 and older, Social Security represents “a critical source of income, and is often their only hedge against inflation.’’

To pay for the proposed overhaul, the authors recommend that the earnings cap on contributions to Social Security – currently set at $110,100 and affecting approximately 6 percent of working Americans – be permanently lifted.

“This option by itself would eliminate most of Social Security’s solvency issues in perpetuity,’’ said Estes, a professor in the UCSF School of Nursing and in the Department of Social & Behavioral Sciences.

The authors also suggest that salary reduction plans such as flexible spending accounts become subject to Social Security taxes, and that the Social Security contribution rate be slowly increased by 1/40th of one percent over 20 years.

“Social Security is earned through hard work and contributions,’’ Estes said. “It is insurance against the loss of wages in retirement, loss of the ability to work through disability, death of parents for surviving children and spouses. Every generation and every family with a worker is covered. The private sector is unable to ensure economic security in old age through private pensions, 401(k)s, home equity and interest on savings. This universal, secure source of retirement income for all working Americans and their families has never been more important.’’

Co-authors of the report are NOW president Terry O’Neill and Heidi Hartman, president of the Institute for Women’s Policy Research.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. For further information, visit www.ucsf.edu.

UC Irvine doctor finds disparities in access to the top-quality care that boosts survival.

Robert Bristow, UC Irvine

Dr. Robert Bristow believes a decidedly low-tech approach could significantly enhance the survival rate for ovarian cancer, even though it’s the deadliest women’s reproductive cancer, claiming 15,000 lives each year; it has no reliable screening or prevention methods; and its research funding is about one-sixth the amount for breast cancer.

“We don’t have to redesign a molecule to improve the outcome for women with ovarian cancer,” says Bristow, the Philip J. DiSaia Chair in Gynecologic Oncology and director of UC Irvine’s Division of Gynecologic Oncology. “Recent research has shown that the most profound impact on survivorship occurs when women get proper care from surgeons trained in the latest techniques for treating ovarian cancer.”

In March, he presented to the Society of Gynecologic Oncology a study of 50,000 ovarian cancer patients finding that poor women and African Americans were less likely to receive the highest standards of care, leading to worse outcomes than for white and affluent patients.

[Related: UC Irvine study finds racial, economic disparities in ovarian cancer care, survival]

“Not all women are benefiting equally from improvements in ovarian cancer care,” Bristow says. “The reasons behind these disparities are not entirely clear, which is why we need additional research.”

The study’s goal was to quantify differences related to race and socioeconomic status among women being treated for epithelial ovarian carcinomas – cancer that forms on the surface of an ovary. It also aimed to determine whether their care adhered to National Comprehensive Cancer Network treatment guidelines.

Bristow and colleagues found that five-year survival rates varied significantly. (Improvement in ovarian cancer care is measured in length of survival after diagnosis rather than a “cure” rate.)

Among those whose care met NCCN standards, the rate for white women was 41.4 percent, compared with 33.3 percent for African American women. Among those whose care did not meet NCCN standards, the rate for white women was 37.8 percent, compared with 22.5 percent for African American women. Those on Medicaid or without insurance faced a 30 percent increased risk of death. Poor women – defined as having an annual household income of less than $35,000 – had worse survival rates regardless of race.

Bristow’s study was part of an effort by the Society of Gynecologic Oncology and colleagues at the Mayo Clinic and Washington University in St. Louis to assess the quality and outcomes of ovarian cancer care in the U.S.

In November, Bristow led a symposium at UC Irvine that attracted gynecologic surgeons from 10 countries – including Australia, Poland and Denmark – to learn the latest surgical and chemotherapy techniques for treating ovarian cancer.

“This is helping us understand the kind of advanced expertise we need to bring to women in Denmark,” said Dr. Pernille Jensen of Odense University Hospital. Her nation is planning to consolidate ovarian cancer treatment from five sites to one in order to concentrate surgical expertise and improve the level of care women receive.

“There is a great need to raise the education level of fellowship-trained surgeons,” Bristow says. “Under the best circumstances, treating ovarian cancer is challenging, because there’s no screening tool available to detect the disease in its early stages.”

Since only 20 to 30 percent of ovarian cancers are diagnosed while still confined to the primary site, it’s critical that surgeons can effectively treat it in advanced stages after the cancer has spread to areas such as the liver, the lungs and nearby lymph nodes.

Even women with late-stage ovarian cancer can see survival rates significantly higher than those treated with traditional approaches.

“For example, we’ve known for several years that the combination of intravenous chemotherapy and intraperitoneal chemo – in which the drugs are injected directly into the abdominal cavity – greatly improves survival,” Bristow says. “Yet too many cancer centers rely solely on IV chemo.”

He says the symposium will become an annual event, with UC Irvine and colleagues at Washington University in St. Louis hosting in alternate years.

UC Irvine has a legacy of leadership in treating reproductive cancers.

DiSaia, the founding director of the Division of Gynecologic Oncology and Bristow’s predecessor, is legendary, having written the first comprehensive book on treating gynecologic cancers. DiSaia recently published the eighth edition of Clinical Gynecologic Oncology. He is also chairman of the Gynecologic Oncology Group, a national collaboration of universities and cancer centers that directs studies funded by the National Cancer Institute.

UC Davis researchers urge more patient-centered care.

Marlene von Friedrichs-Fitzwater, UC Davis

African-American breast cancer survivors were satisfied with their cancer treatment, but most were never offered clinical trials opportunities or support services during or after their treatment, according to a study by a UC Davis Comprehensive Cancer Center researcher and her community partner, the Rev. Tammie Dynse.

The study, “The Unmet Needs of African-American Women with Breast Cancer,” involved interviews with 137 African-American women who survived breast cancer. Researchers sought to assess patients’ clinical experiences, concerns and needs, asking participants questions about their treatment, access to information, support services and clinical trials, insurance and employment status, general health and lingering effects of cancer treatment.

“Anyone who takes care of people with cancer should be aware of these concerns,” said Marlene M. von Friederichs-Fitzwater, director of the UC Davis Comprehensive Cancer Center’s Outreach Research and Education Program,  principal investigator and lead author of the study, which was published online in Advances in Breast Cancer Research in April. “We know that one powerful factor in cancer outcomes is the extent to which patients obtain information and participate in their treatment decision-making.”

African American women have the highest incidence of breast cancer of any population group in the United States, and the highest mortality rates, according to the National Cancer Institute. The death rate – 33 per 100,000 – is more than twice that of Asian-American women and Hispanic women.

But while many studies have documented African American disparities in breast cancer screening, detection, mortality and disease staging, few have looked at the experiences from a patient’s post-treatment and survivorship perspective.

For the study, von Friederichs-Fitzwater telephoned African-American women throughout the Sacramento region  known to have been treated for breast cancer. The women were identified through support groups and  advocacy organizations, survivorship events and other agencies.

A majority (90 percent) of participants reported that they were satisfied with their treatment, but nearly one-fourth of them were not satisfied with the information they received about breast cancer and  treatment options from their doctors.

For example, more than 80 percent of respondents would have liked to have received information about complementary medicine options but did not, and 60 percent reported that they sought treatment information on their own. Seventy-eight percent of interviewees said their doctors did not talk to them about clinical trials, but the same percentage said they would have enrolled, if eligible.

Additionally, nearly half of the women (43 percent) said their doctor or other health care provider did not provide information about support services, but 62 percent said they wanted such services.

Of the minority of women who did access support programs, about one-fourth of them said they were not at all satisfied. One respondent said she felt out of place at a support group meeting where she was the only African-American woman, and never returned after her first visit.

The study also underscored the fact that many African-American women diagnosed with breast cancer perceive discrimination in the delivery of their care. Concerns included perceptions that information or certain types of treatment were being withheld because of their race or socioeconomic circumstances.

Study co-author Denyse, president and founder of Carrie’s Touch, a Sacramento-area nonprofit community organization for African-American women with breast and other cancers, said the findings confirmed many of the concerns that she had heard from individuals in the community.

“The experiences that these women encounter have a lot to do with a lack of trust of the medical professional community,” said Denyse, herself a breast cancer survivor. “Our culture as a whole is very silent about breast cancer. When you find out a woman in the African-American community has had cancer, it’s usually at her funeral.”

Von Friederichs-Fitzwater said such perceptions – whether based in reality or not – can affect a patient’s satisfaction and overall outcome. “This study points to the need to develop more patient-centered care that is culturally sensitive and to deliver comprehensive care that addresses the physical, mental, psychosocial and spiritual needs of patients,” she said.

For example, von Friederichs-Fitzwater said African-American women could benefit greatly from a peer navigator program, in which specially trained breast cancer survivors would work one-on-one with newly diagnosed women, guiding them through the earliest, most difficult phases of diagnosis and treatment.

“If you don’t have someone continually educating and supporting you and reminding you of the symptoms that can come along with chemotherapy and radiation, you will think you are dying, and then stop your treatment,” added Denyse. “I hope this research is a stepping stone to a more in-depth study so that we can really learn some of the challenges African-American women are facing in an effort to save their lives.”

The current study was funded with a grant to Carrie’s Touch from the Sutter Medical Foundation.

UCSF study indicates effective treatment should be far more common.

Edward Chang, UC San Francisco

Ten years ago, a landmark clinical trial in Canada demonstrated the unequivocal effectiveness of brain surgeries for treating uncontrolled epilepsy, but since then the procedure has not been widely adopted — in fact, it is dramatically underutilized according to a new study from the University of California, San Francisco.

The study, published this month in the journal Neurology, showed that the number of Americans having the surgery has not changed in the decade since release of the effectiveness study, though surgical treatment is now uniformly encouraged by neurology and neurosurgery professional societies.

The U.S. Centers for Disease Control and Prevention estimates that 2 million Americans have epilepsy. Hundreds of thousands of these men, women and children suffer from uncontrolled seizures, but nationally only a few hundred are treated surgically each year with UCSF performing about 50 of the operations.

Among people who do have the operation, the study found, there are significant disparities by race and insurance status. White patients were more likely to have surgery than racial minorities, and privately insured patients were more likely to undergo surgery than those with Medicaid or Medicare.

“As a medical community, we are not practicing evidence-based medicine with regard to the treatment of patients who have epilepsy,” said Edward Chang, M.D., chief of adult epilepsy surgery in the UCSF Department of Neurological Surgery and the UCSF Epilepsy Center. “There are a lot of people who are taking medications and continuing to have seizures even though they can potentially be seizure-free.”

Epilepsy has been recognized as an important neurological condition since ancient times and its name means “seizures” in Greek. It can be inherited or it can be caused by anything that injures or irritates the brain. Hippocrates, the father of western medicine, described it in detail in his writings some 2,500 years ago, and it is believed to have afflicted many famous people throughout history, including Julius Caesar.

UCSF is one of the world’s leading institutions involved in epilepsy research, with one of the few medical centers that has top-ranking departments in relevant areas: neurology, biomedical imaging and neurosurgery.

Paul Garcia, M.D., director of the clinical epilepsy program and a study co-author, said that most patients referred to UCSF for surgical evaluation have had uncontrolled seizures for many years despite trying several medications. Research has shown that after the first two medicines fail, it is uncommon for patients to gain complete seizure control with medical treatment alone. Without control over their seizures, patients are at risk for physical injuries or even dying. Furthermore, the seizures often interfere with normal life activities such as driving, studying and working.

To see how widely this type of surgery has been used, Chang and neurosurgery resident Dario Englot, M.D., Ph.D., accessed a national database of all of the surgeries across the United States for the last 20 years — a timeline centered on the Canadian study. They found that there has been no increase in the 10 years, even as diagnoses of epilepsy have increased along with the number of hospitalizations for seizures.

Part of the problem is awareness, both among patients and care providers, Chang said. New anticonvulsant drugs appear on the market often enough to provide physicians with new drug combinations for their patients to try. Brain surgery can be more daunting than having to swallow fistfuls of pills, even though surgery is much more effective for many people. The problem though is that new medications are not very effective if previous ones already failed, according to Chang. Epilepsy surgery in the modern era has been repeatedly shown to be safe and effective.

Also, many people with epilepsy are not getting the specialty care needed to properly identify the source of the seizures. The study found a significant trend that patients are being evaluated less at epilepsy centers and more at community hospitals often without dedicated epilepsy expertise. The result is that some patients may not receive an adequate workup, and in many cases, the source of the seizures can be very difficult to find without special expertise. “The success of epilepsy surgery totally depends upon the accurate localization of seizure onset region,” Chang said.

The decade-old Canadian study showed that more than nearly two-thirds of all people who underwent surgery as part of the study in the 1990s were seizure-free.  Fewer than 10 percent of patients in the study who relied on drugs alone achieved the same degree of freedom from seizures.

“Even though this important evidence was published 10 years ago now, we have not seen increases in the number of patients,” Chang said. “We need to do better.”

The article, “Epilepsy surgery trends in the United States, 1990-2008” is authored by Dario J. Englot, David Ouyang, Paul A. Garcia, Nicholas M. Barbaro, and Edward F. Chang and appears in the journal Neurology. See www.neurology.org/content/78/16/1200.abstract.

This work was supported in part by the Clinical and Translational Science Institute (CTSI) at UCSF.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.

UC Berkeley study finds upside to texting.

Adrian Aguilera, UC Berkeley

Text messaging often gets a bad rap for contributing to illiteracy and high-risk behavior such as reckless driving. But a social welfare professor at the University of California, Berkeley, has found an upside to texting, especially for people who feel stressed out, isolated and alone.

Adrian Aguilera, a clinical psychologist who treats many low-income Latinos for depression and other mental disorders, said his patients report feeling more connected and cared for when they receive text messages asking them to track their moods, reflect on positive interactions, and take their prescribed medications.

“When I was in a difficult situation and I received a message, I felt much better. I felt cared for and supported. My mood even improved,” reported one Spanish-speaking patient in Aguilera’s cognitive behavior therapy group at San Francisco General Hospital.

The project began in 2010 when Aguilera developed a customized “Short Message Service (SMS)” intervention program, with the help of UC San Francisco psychologist Ricardo Munoz,  in which Aguilera’s patients were sent automated text messages prompting them to think and reply about their moods and responses to positive and negative daily interactions.

The psychologists published the results of the project last year in the journal, Professional Psychology: Research and Practice. Aguilera has since been awarded a $75,000 grant from the Robert Wood Johnson Foundation.

“We are harnessing a technology that people use in their everyday lives to improve mental health in low-income, under-served communities,” said Aguilera, whose passion for addressing mental health issues among the poor was sparked while growing up in a Mexican immigrant community in Chicago.

Recent statistics bear out Aguilera’s outreach strategy. The 2011 Pew Research Center’s Internet & American Life Project survey found that African American and Latino mobile phone owners send and receive more text messages than do Caucasians.

Of the 2,277 adult cell phone users surveyed by the Pew Foundation, the most active senders and receivers of text messages (at least 50 messages a day) were non-whites, earned incomes below $30,000 and did not graduate from high school.

Aguilera came up with the texting idea when he realized that many of his patients had difficulty applying the skills they learned in therapy to their daily lives, possibly because of the many stressors they routinely faced. They could not afford laptops, electronic tablets or smart phones, but most had a basic cellular phone and a prepaid monthly plan.

“The people I wanted to impact directly didn’t have as much access to computers and the Internet,” Aguilera said. “So I thought about using mobile phones to send text messages to remind them to practice the skills covered in therapy sessions.”

The feedback from patients offers new insight into the human need for regular contact or check-ins for mental health professionals, even if only through automated technology, Aguilera said.

While the text-messaging sessions are designed to last only a certain number of weeks, about 75 percent of the patients requested that they continue receiving the messages. When the program stopped for a week due to technical problems, some really noticed the difference.

“When it stopped, I missed it,” the patient reported. “My life is so crazy, I need a reminder to think about how I feel.”

Dollars donated by California tax filers support innovative research to fight breast cancer, tobacco-related diseases.

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 (CBCRP).

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.

UCSF’s annual forum focuses on health concerns.

Student organizers helped ensure the success of UCSF's fourth annual LGBT health forum.

For the fourth consecutive year, the UC San Francisco Center for LGBT Health & Equity convened a health forum, attracting 200 interprofessional health students for two days of education about the long-overlooked health concerns of lesbian, gay, bisexual, transgender, queer and intersex (LGTBQI) people.

The 2012 forum held earlier this month highlighted two major developments in LGBT health since the 2011 meeting: the publication of an Institute of Medicine report on LGBT health concerns and the release of a groundbreaking “Field Guide” to best practices in LGBT patient-centered care by the Joint Commission, the accrediting body for the nation’s hospitals.

“Attention to LGBT health has skyrocketed since we held the first forum in 2009,” said Shane Snowdon, director of the UCSF Center for LGBT Health & Equity, which has convened the forum annually and served as project adviser for the Joint Commission’s LGBT Field Guide. “That’s no coincidence: UCSF has been a national leader in highlighting LGBT health needs and educating health professionals about them.”

This year’s forum, planned in conjunction with the UCSF LGBTQ Student Association, featured the UC premiere of “Gen Silent,” a powerful film about the challenges faced by LGBT elders. “The generation that fought hardest to come out is going back in . . . to survive,”  the film states.

A screening of the film, which moved many viewers to tears, was followed by a question-and-answer sessions with Seth Kilbourn, director of Openhouse, the non-profit that serves LGBT seniors in San Francisco.

The forum featured multiple workshops on LGBT health topics, a panel of LGBTQI patients speaking candidly about their health care experiences, and keynotes by Snowdon, noted sex educator Carol Queen and Darin Latimore, M.D., assistant dean for student and resident diversity at UC Davis School of Medicine.

Latimore also participated in a well-attended panel of health professionals discussing their individual journeys as “out” practitioners.

Students from UCSF’s schools of dentistry, medicine, nursing and pharmacy and physical therapy were joined by students from other institutions at the sold-out event, which offered elective credit. Evaluations of the forum were overwhelmingly positive, with many attendees indicating that it had significantly heightened their awareness of LGBT concerns in health care and beyond.

Many attendees shared the sentiments of a student who said, “I never really thought about whether my friends’ sexual orientation was important with respect to run-of-the-mill conversations, and I didn’t realize there were significant health implications associated with their sexuality. I think I’ll be asking more questions to encourage disclosure when I’m providing health care. Additionally, I think I’ll make fewer assumptions about other people, including my friend and family.”

Attendees also expressed appreciation for the attention paid to transgender health needs at the forum. “I feel more comfortable working with LGBTQI patients now, and have greatly improved knowledge about transgender health issues,” said an attendee. “I wish this forum was required for all students!”

Snowdon, who lectures on LGBTQI health in all of UCSF’s schools, notes that forum attendance has quadrupled since 2009, reflecting students’ intensifying interest in the subject. “When I became LGBT director in 1999, we could only dream of selling out a 200-student forum. I give our busy students tremendous credit for spending a weekend learning about LGBT health needs — their interest means a lot.”

UCSF and SF General are both major training grounds for doctors who specialize in HIV/AIDS, and numerous research collaborations exist across the Bay Bridge.

At two of the largest hospitals near downtown Oakland, doctors have heard the same story so many times from young African-American men undergoing treatment for HIV/AIDS that they practically know it by heart.

They felt ostracized during their teen years. They first explored their sexual identities in secret. Their earliest encounters were covert trysts. But after a while, they found what they thought to be true love and acceptance in the arms of a much older man—whom they later discovered exposed them to HIV.

All these stories point to one thing, said Kathleen Clanon, M.D., ACMC, an attending physician and the former chief of HIV services at Highland Hospital, part of the county medical center and one of the main facilities treating people with HIV/AIDS in Oakland. If the medical community is to effectively confront the HIV/AIDS epidemic in Oakland, she said, it needs to connect with communities like the one these young men belong to: a loose-knit, insular, hidden and particularly vulnerable group made up of individuals who may not know they are at high risk and may not be receiving the information they need to protect themselves.

“If we could really reach out to them effectively, we wouldn’t see new cases in Alameda County,” Clanon said.

The epidemic across the bay

In the Bay Area and the United States as a whole, the HIV/AIDS epidemic continues to spread, particularly in urban areas and within certain populations such as young African-American men.

With changes and cutbacks in health care funding looming, Oakland doctors are concerned they may not be able to adequately address their community’s needs.

For decades, the University of California, San Francisco, and the San Francisco General Hospital and Trauma Center (SFGH) have led the medical establishment worldwide in patient care, professional training and research related to HIV/AIDS. Along with the San Francisco Department of Public Health and the greater medical community in the city, UCSF has helped set the standard for care for this disease since the earliest days of the epidemic. UCSF and SFGH are both places where people with HIV/AIDS get some of the best care in the world.

[Related: In focus: HIV/AIDS in 2012, Trauma drives HIV epidemic in women, Video depicts women with HIV]

Just 10 miles away, across the Bay Bridge in Oakland, patients also receive excellent care – assuming they are diagnosed and linked to care. Many of them are not.

Doctors in Oakland describe a smoldering epidemic, growing larger every year, that is in some ways more hidden than the epidemic in San Francisco. Providing world-class care to patients there is only one part of the challenge. Finding people at high risk, getting them tested, helping them avoid the virus or linking them to care if they are already infected are also huge issues that contribute to the overall nature of AIDS in Oakland.

The city of Oakland is part of Alameda County, where an estimated 6,000 to 7,000 or more people live with HIV/AIDS, said Damon Francis, M.D., of the East Bay AIDS Center, one of the county’s major providers for people with HIV/AIDS. Francis was a chief resident at SFGH before doing a one-year fellowship at the East Bay AIDS Center and has been compiling statistics on the HIV/AIDS epidemic in the East Bay.

His statistics show that the epidemic in Oakland closely follows national trends, with more infections appearing among women, people of color, and young people. Other urban centers in California face very different epidemics. San Francisco has a much larger gay population affected by the disease and Los Angeles has many more Latinos.

That only includes those diagnosed and counted. Francis adds that the lack of a centralized approach, added to the covert nature of homosexuality among some urban African-American men, makes it particularly difficult to know how many undiagnosed infections exist in Alameda County, which includes Oakland. “We know we’re undercounting, and we know the epidemic is getting worse,” he said.

Clanon estimates the actual number is closer to 9,000 people, with about 5,000 -6,000 in care at Highland Hospital, the East Bay AIDS Clinic Kaiser Permanente sites,  and at smaller clinics and private practices scattered across the county. The city and county of San Francisco, by comparison, has more than 15,000 people living with HIV/AIDS in a population about half the size of Alameda County.

Identifying the people who are not yet diagnosed is one of the keys to turning the tables on the epidemic. Yet, when these people are hard to identify, it is also one of the core challenges, especially when it comes to young men having sex with other men.

Traditional HIV prevention messages revolve around safe sex and are usually spread via health care providers. But healthy young men may not see themselves in need of health care unless they break a leg or have some other acute injury. As such, they may not access the system and are not likely to encounter traditional prevention messages in their daily lives.

Doctors in Oakland worry that their inability to reach such at-risk populations before they are exposed to the virus keeps the epidemic moving upward.

“We worry that not only do we not have the right preventive messages but we’re not giving them in the right places either,” said Jeff Burack, co-medical director of the East Bay AIDS Center.

According to Howard Edelstein, M.D., a doctor at the Alameda County Medical Center in Oakland who also specializes in HIV/AIDS care, somewhere between a third to half of the patients they see already have advanced AIDS when they come in for the first time. This makes their treatment more complicated because people with advanced AIDS are generally sicker and may have more co-infections and other complications.

Finding money for new prevention efforts is complicated by limited funds already split among organizations that represent the various affected populations.

HIV/AIDS funding: The question of Ryan White and Medi-Cal

The impending crisis over funding for HIV/AIDS in general creates a sense of urgency. Like many parts of the country, Oakland may be facing thinning resources just as its patient pool expands. For now, though, a major amount of financial support pours into the city from federal and state programs that help to pay for antiretroviral drugs and other services for people with HIV/AIDS.

The federal Ryan White Care Act alone provides about $7 million a year for the care of low-income people with the disease in Oakland, Clanon said. That money pays for doctors, social workers, nurses, support staff and numerous clinic programs. But most of all, it pays for drugs. The law enables people to begin taking drugs right away, often the same day they are diagnosed and even before they can document their income and residency requirements.

“It has been the cornerstone of care for poor people with HIV,” Clanon said. She estimates that two-thirds of the 1,200 patients undergoing treatment for HIV/AIDS at the county hospital are supported by this federal funding mechanism.

At the East Bay AIDS Center, which currently sees about 1,400 patients, Ryan White funding is the sole source of support for nearly 200 patients, including most of the 110 HIV-positive youth in care (ages 15-24).

Nationally, the Ryan White Act provides about $2 billion a year to hospitals and clinics across the United States. It is unclear what will happen to this funding after 2013, when the current authorization is due to expire. When this expiration loomed in the past, the Congress reauthorized the funding.  But in the current political and economic climate, no one is counting on that.

“The smart money, at the moment, is that it will either be greatly changed or will go away in 2013,” Clanon said.

Meanwhile, the patient population in Oakland continues to grow. In addition to the large caseload of existing patients, doctors at the East Bay AIDS Center added three or four additional patients per week last year. The county hospital is also adding hundreds of new cases annually.

Many of the patients in Oakland rely on state Medi-Cal funds, a health insurance program for low-income Californians that also faces an uncertain future. State cutbacks to Medi-Cal already have made it difficult for some patients to find specialized treatment because fewer and fewer doctors are accepting the public insurance.

“Try to find a urologist in the East Bay who takes Medi-Cal — there aren’t any,” Edelstein said. “Try to find an orthopedist who takes Medi-Cal – again, zero.”

A shared separation

Many of the people with HIV/AIDS in San Francisco are in the same situation as people in Oakland with respect to federal Ryan White funding and state Medi-Cal issues. Many also face the same complicating societal issues — homelessness, unemployment, poverty, food insecurity, drug addiction and so on.

“It is very heavily an epidemic of the disenfranchised,” Francis said.

In part because of such similarities, medical collaborations and other exchanges long have occurred on both sides of the Bay. UCSF and SFGH are both major training grounds for doctors who specialize in HIV/AIDS, and numerous research collaborations exist across the Bay Bridge as well.

Edelstein has participated in collaborations with UCSF researchers on a number of studies, including an ongoing trial called Intervention for those Recently Informed of Seropositive Status (IRISS), which looks at the effect of early psychiatric interventions for people with HIV and depression, a common reason why people with HIV/AIDS fail to adhere to their drug regimens.

Still, even if there is a strong sense of shared mission among doctors in San Francisco and in Oakland, differences remain. “We really don’t have anything close to what San Francisco has in terms of money and manpower to address HIV,” Francis said.

Clanon summed up the difference with a statement attributed to the Mexican politician Porfirio Diaz. President of Mexico for 40 years beginning in the 1870s, Diaz allegedly described his country using the phrase, “So far from God, so close to the United States.”

“That’s how I feel,” Clanon said.

Limited English proficiency could limit those who enroll for coverage, UC Berkeley-UCLA study finds.

Language barriers could deter more than 100,000 Californians from enrolling in the Health Benefit Exchange, according to a study released today by the California Pan-Ethnic Health Network, the UCLA Center for Health Policy Research, and the UC Berkeley Center for Labor Research and Education.

The study presents findings from a UC Berkeley-UCLA micro-simulation that estimates the likely enrollment in health care reform programs in California. Specifically, the study projects that more than 1 million limited-English proficient (LEP) adults will be eligible to receive tax credits to purchase affordable coverage in the state’s Health Benefit Exchange, which expands access to affordable health coverage as part of the Patient Protection and Affordable Care Act.

However, only 42 percent of eligible LEP adults are expected to enroll in the program.

“The evidence suggests that Californians who do not speak English very well are at a disadvantage in terms of accessing health care reform programs,” said Daphna Gans, a research scientist at the UCLA Center for Health Policy Research and the lead author of the study.

The UC model shows that if language is not a barrier, participation by LEP adults could increase to 53 percent, a difference of approximately 110,000 individuals.

“These are difficult times for California families, and ensuring every Californian has access to quality, affordable health care is vital for our economic recovery,” said California Assembly Speaker John A. Pérez, who authored legislation (AB 1602) in 2010 establishing the exchange. “The Health Benefit Exchange will help lower the cost of health insurance for every Californian, but it’s vital for every eligible Californian to enroll to ensure we bring health care costs down as much as possible for California’s working families.”

In California, more than 15 million residents speak a language other than English at home and nearly half (7 million) of them have limited proficiency in English. The study shows the importance of adopting a diverse strategy for outreach and education.

“The exchange is a key opportunity to make Californians healthier,” said Ellen Wu, executive director of the California Pan-Ethnic Health Network. “We have to do this right. Our success in implementing this new program will be measured not just by the number of people enrolled but by the state’s ability to reach those who are most often left behind. We have to target resources through multicultural and multilingual outreach to ensure that communities of color who are eligible, particularly people who speak English less than very well, enroll in coverage.”

The study was conducted based on analyses using the California Simulation of Insurance Markets model, a micro-simulation developed by UCLA and UC Berkeley researchers, which uses a range of official data sources (including the California Health Interview Survey) to estimate the impact of various elements of the Patient Protection and Affordable Care Act on employer decisions to offer insurance coverage and on individual decisions to obtain coverage in California.

The development of the model was supported through funding by The California Endowment, the California Health Benefit Exchange and the California Pan-Ethnic Health Network.

Read the study, “Achieving Equity by Building a Bridge From Eligible to Insured.”

The California Pan-Ethnic Network (CPEHN), celebrating 20 years as a champion for health equity, works to eliminate health disparities by advocating for public policies and sufficient resources to address the health needs of communities of color.

The UC Berkeley Center for Labor Research and Education is a public service and outreach program of the UC Berkeley Institute for Research on Labor and Employment that conducts research and education on issues related to labor and employment.

The UCLA Center for Health Policy Research is one of the nation’s leading health policy research centers and the premier source of health policy information for California.

Smaller disparities often due to whites being shorter-lived than average.

A UCLA-led group of researchers tracing disparities in life expectancy between blacks and whites in the U.S. has found that white males live about seven years longer on average than African American men and that white women live more than five years longer than their black counterparts.

But when comparing life expectancy on a state-by-state basis, the researchers made a surprising discovery: In those states in which the disparities were smallest, the differences often were not the result of African Americans living longer but of whites dying younger than the national average. And, interestingly, the area with the largest disparities wasn’t a state at all but the nation’s capital, Washington, D.C.

The findings are published in the February issue of the peer-reviewed journal Health Services Research.

“In health-disparities research, there is an assumption that large disparities are bad because vulnerable populations are not doing as well as they should, while areas with small disparities are doing a better job at health equity,” said Dr. Nazleen Bharmal, the study’s lead researcher and a clinical instructor in the division of general internal medicine and health services research at the David Geffen School of Medicine at UCLA. “In our study, we show that the reason there are small disparities in life expectancy is because white populations are doing as poorly as black populations, and the goal in these states should be to raise health equity for all groups.”

The research team studied death-certificate data from the U.S. Multiple Cause of Death for the years 1997–2004. The data covered 17,834,236 individuals in all 50 states and the District of Columbia. The researchers noted race/ethnicity, sex, the age at death and the state where each subject was born, lived and died.

Overall, the national life expectancy was 74.79 years for white men and 67.66 years for black men. Among women, the average life span was 79.84 years for whites and 74.64 for blacks. In every state, gaps were narrower between women than men.

New Mexico had the smallest disparities between blacks and whites (3.76 years for men and 2.45 years for women), while the District of Columbia had the largest (13.77 years for men and 8.55 years for women).

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UCLA study finds program effective with low-income, preschool-age Latinos.

Wendy Slusser, UCLA (Click image for larger view)

A UCLA study has found that a new parent-training program is effective in reducing the risk of low-income, preschool-age Latino children being overweight.

Researchers found that after one year, there was a 9 percent reduction in overweight and obese children in the parent-training intervention group, while a control group that did not receive the parent training had a 16 percent increase in overweight and obese children.

“This is the first pilot intervention study that reversed the weight gain seen in preschool Latino children living in low-income families,” said lead author Dr. Wendy Slusser, an associate professor of pediatrics and public health at the David Geffen School of Medicine at UCLA and the UCLA School of Public Health and director of the Fit for Healthy Weight program at Mattel Children’s Hospital UCLA. “The intervention was unique because it blended nutrition, physical activity and parenting topics that were delivered in a participatory manner and where mothers learned from each other and practiced the skills at home.”

The findings are reported in the February issue of the journal Childhood Obesity, a special issue celebrating the second anniversary of first lady Michelle Obama’s Let’s Move initiative and highlighting original research focused on advancements in childhood obesity.

Overweight and obesity rates among preschoolers aged 2 to 5 are high, with disparities evident among racial and ethnic groups: 28 percent of Mexican American preschoolers are obsese or overweight, as are 26 percent of African Americans and 17 percent of Caucasians. Preventing obesity in Latino children can have major public health benefits, given that Latinos are among the groups with the highest risk of developing obesity and its associated conditions, such as diabetes and hypertension.

The randomized, controlled study evaluated the culturally sensitive parent-training intervention, which consisted of one-and-a-half–hour classes once a week for seven weeks, along with two booster sessions, given one month apart. The control group was wait-listed and given a standard informational nutritional pamphlet. The control group was offered the parent-training classes after the one-year follow-up.

The study addressed the risks and causes of obesity in low-income Latino children and included participants from the Venice Family Clinic’s Simms/Mann Health and Wellness Center and community sites including Los Angeles Unified School District preschools, the Santa Monica Headstart program, the Mar Vista Family Center and the Children’s Bureau.

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UC Davis cancer center among five nationwide sites focused on recruitment, retention of minorities in clinical trials.

Moon Chen, UC Davis

Researchers from the UC Davis Cancer Center are part of a national effort that has just received a five-year round of funding to better understand and address barriers that limit the participation of minority populations in cancer therapeutic trials.

The National Institute of Minority Health and Health Disparities (NIMHD), the newest of the National Institutes of Health institutes, has awarded a $5.1 million grant over five years to Enhancing Minority Participation in Clinical Trials (EMPaCT), a consortium of five institutions seeking to increase representation of multiple minority groups in cancer trials. The Phase II funding follows up on an earlier 18-month start-up Phase I grant.

EMPaCT consists of five National Cancer Institute-designated cancer centers and NIMHD disparities research program sites selected for their commitment to cancer and health disparities research, as well as cancer clinical trial development and implementation. In addition to UC Davis, which is representing the West region and focusing on Asian American accrual, participating institutions are:

• University of Minnesota, Minneapolis, lead institution (Midwest — Native American and African American accrual)
• University of Alabama, Birmingham, co-lead institution (Southeast — African American accrual)
• Johns Hopkins University (East — African American accrual)
• University of Texas M.D. Anderson in Houston (Southwest — Latino/Hispanic accrual)

The consortium’s Phase II goal is increasing the recruitment and retention of racial/ethnic minorities into therapeutic clinical trials to reduce cancer-related health disparities. The objective is to realize a 5 percent increase in participants over the next five years.

A key initial strategy is education and training through online courses, or modules. The consortium will establish a Web portal that includes training modules that have been customized for investigators, research staff, referring physicians and patient navigators. It will be custom-designed to provide resources for recruitment and retention while also serving as an information hub. Each institution will make a different contribution to the site, with the UC Davis team providing cultural-competency expertise.

Clinical trials, which are vital to developing new cancer therapies, evaluate the effectiveness and safety of medications or medical devices by monitoring their effects on large groups of people. Having adequate and meaningful numbers of individuals from all racial/ethnic populations and both genders is needed to assure that the therapies being developed for cancer will be based on the specific characteristics of these populations. Thus, inclusion is necessary, especially as the U.S. is increasingly diverse.

“While racial/ethnic minorities make up nearly half of the U.S. population — and, in some states, like California, Texas and Hawaii already constitute the majority — relatively few participate in clinical trials for various reasons, including cultural or religious factors, lack of awareness and a historical mistrust of the medical system,” said UC Davis professor Moon Chen, head of the UC Davis EMPaCT team.

“The fact that only 3 percent of adults are enrolled in clinical trials, and only 10 percent of those are minorities, shows how important it is for more minorities to participate in trials,” added Chen, who serves as associate director for cancer control at the UC Davis Cancer Center. “EMPaCT’s efforts are designed to aggressively increase participation of minorities in these all-important trials.”

UC Davis Cancer Center is the only National Cancer Institute- designated center serving the Central Valley and inland Northern California, a region of more than 6 million people. Its top specialists provide compassionate, comprehensive care for more than 9,000 adults and children every year, and offer patients access to more than 150 clinical trials at any given time. Its innovative research program includes more than 280 scientists at UC Davis and Lawrence Livermore National Laboratory. The unique partnership, the first between a major cancer center and national laboratory, has resulted in the discovery of new tools to diagnose and treat cancer. Through the Cancer Care Network, UC Davis is collaborating with a number of hospitals and clinical centers throughout the Central Valley and Northern California regions to offer the latest cancer care services. For more information, visit cancer.ucdavis.edu.