Health Disparities

Last week’s C-IDEA global health symposium here at Stanford featured 20 presentations on low-cost ideas for preventing disease in developing nations. As I wrote in an Inside Stanford Medicine article on the event, one of the more clever ideas was “EZPZ,” a method for treating latrine waste with alkalizing lime so that pathogens that might leak into the water supply can be eliminated and the waste can be recycled as crop fertilizer. Developed by a Stanford team from the “Design for Extreme Affordability” course offered at the Hasso Plattner Institute of Design, this solution not only reduces diarrheal diseases, but it also provides Cambodian farming households with about $40 of fertilizer each year.

Another highlight of the conference was the keynote speech delivered by Jeffrey Sachs, PhD, director of The Earth Institute at Columbia University and author of the bestselling book The End of Poverty. Sachs’ call to action for the packed hall of global health innovators was this: The developing world needs you to create smart phone apps that connect people in isolated rural villages to good medical care, clean water and medicine.

Previously: What I did this summer: Stanford medical student helps India nonprofit create community-health maps and A story of how children from Calcutta’s poorest neighborhood became leaders in improving health

Medicaid, the federal health-insurance program for low-income individuals, is set to undergo a big expansion in 2014 as part of the implementation of the Affordable Care Act. That expansion is good news for the children of low-income adults who will be newly eligible for health insurance, according to an opinion piece published online yesterday in JAMA Pediatrics.

Under the current system, Medicaid and SCHIP health insurance cover a much larger proportion of low-income children than adults, with the result that many insured children have uninsured parents. While insuring kids is important, it isn’t always enough, say the authors of the new piece, who are from Indiana University and Boston University.

“Children with uninsured parents are significantly less likely to receive recommended health services, even if they themselves are covered,” they write.

However, because of the U.S. Supreme Court’s 2012 decision on the Affordable Care Act, states get to choose whether or not to expand Medicaid. (The Supreme Court ruled that the ACA’s Medicaid-expansion mandate was coercive.) This is where the story gets really interesting. The piece describes states’ financial concerns about Medicaid expansion - essentially, that it will be expensive to add people to the Medicaid rolls - but then elaborates on some of the financial factors that states turning down Medicaid expansion may not be considering:

…[O]verall, the cost of the Medicaid expansion to states would be less than 1% of their local gross state product. Others have illustrated that, because uncompensated care reimbursements will decrease under the ACA and because some individuals will shift from Medicaid coverage to coverage through the private exchanges, many states might actuallywind up saving money by accepting the expansion. Medicaid can also have a stimulative effect on the economy, leading to increased employment and revenues, and, once again, can increase the potential for overall savings for many states.

Refusing the expansion will also come at a cost to clinicians, offices, and hospitals. Disproportionate hospital share payments will be trimmed by the ACA, reducing a source of income to hospitals. If many citizens are denied Medicaid, then it is likely that they will remain uninsured. Providers that continue to care for them will do so at a significant loss. Although many complain that Medicaid reimbursements are too low, they are still better than nothing. Such a complaint also ignores the fact that reimbursements for primary care services (even those provided by subspecialists) will go up significantly under the ACA, starting this year.

The authors hope that some or all of the states that have announced they will not expand Medicaid will eventually decide the expansion would be beneficial for their low-income citizens, including parents and children, and for their overall financial picture.

Previously: Stanford economist Victor Fuchs: Affordable Care Act “just a start”, Roundtable of doctors discuss Affordable Care Act and Analysis: The Supreme Court upholds the health reform act (really)

Statistics often don’t tell the whole story. In the case of the Rosebud Indian Reservation in South Dakota, where I traveled last month to write an article for today’s issue of Inside Stanford Medicine, statistics tell a horrifying story. The average life expectancy among the 9,000 residents of the Lakota Sioux tribe is 47 years for the average male, compared to 77 years nationwide. That’s one year younger than Haiti’s 48. Unemployment rates range from 65-80 percent; diabetes, alcoholism and suicide are at epidemic levels.

A group of Stanford students traveled there to spend the week building homes for Habitat for Humanity, volunteering in the Indian Health Service hospital on the reservation, and meeting community leaders in one of the poorest places in the nation. My story describes their experiences:

Each morning, students sat in on the hospital meetings, hearing firsthand the daily struggles of the staff. They heard about the pregnant patient with diabetes who lost her baby the night before, her wails echoing down the hospital halls; they heard about yet another suicide victim, a 25-year-old man who hanged himself two days before. They listened to the staff triaging what levels of care they could afford to provide.

But my article doesn’t nearly tell the whole story. It doesn’t describe the close-knit community on a reservation that has survived a tragic history, the sense of pride and determination among those struggling against the hopelessness that has taken so many young peoples’ lives. One of those Native Americans, Rebecca Foster, PhD, a psychologist at the Rosebud Indian Health Service Hospital, told me about her determination to get an education so that she could return to the reservation to give back. She and her husband are parents to 14 children, seven of them with special needs whom the couple adopted from relatives on the reservation. She talked to me in her office while holding her newborn grandson:

What I tell the young people here is, there is a difference between having to stay here because you are trapped. And choosing to be here because you have something to give. One is a prison, the other is a home… I see a lot of kids who are depressed, who talk about suicide, but they are still resilient. They still have a desire to have a good life, to be happy, to accomplish things. You can never destroy that. There are still a lot of wonderful things on the reservation.

I hope to tell more of these stories in the fall edition of Stanford Medicine magazine.

Previously: Getting back to the basics: A student’s experience working with the Indian Health Service, Lessons from a reservation: Clinic provides insight on women’s health issues, Lessons from a reservation: South Dakota trip sheds light on a life in rural medicine and Lessons from a reservation: Visit to emergency department shows patient care challenges
Photo by Layton Lamsam

Obtaining appropriate health care - including adequate medical insurance coverage - has often proved challenging for patients who may identify with one gender, yet still have body parts of another gender. A trans man who still has breasts may not get coverage for a mammogram, for example.

But that may now change: The Department of Health and Human Services has confirmed that the Affordable Care Act prohibits federally funded health-care programs from discriminating against transgender people. ABC News reports on this today and highlights the case of Jay Kallio, who faced discrimination when he sought treatment for breast cancer:

At the age of 50, Kallio transitioned from female to male, but never had gender reassignment surgery, only hormone treatment. ‘I accept my body as I was born,’ he said. But when a suspicious lump was found in his breast and tested positive for cancer, the surgeon was so shocked that Kallio’s body didn’t match his gender identification — not knowing whether to address him as ‘he’ or ‘she’ — that he couldn’t bring himself to tell his patient the grim biopsy results.

Due to the doctor’s mistake, Kallio was late in receiving treatment.

In a story on transgender health care for the recent issue of Stanford Medicine, I highlight the barriers facing the patients and the importance of doctors providing prejudice-free care. A Stanford physician also emphasizes the unique needs of transgender patients:

Physicians should be cognizant that sex-change surgery patients often still carry reproductive organs from before, and these may need continuing medical attention. That’s something that can be easily missed, says Nelson Teng, MD, associate professor of obstetrics and gynecology at Stanford, who has treated several female-to-male transsexuals for endometrial cancer — cancer of the lining of the uterus. “Many male transgender patients still have a uterus and still should see gynecologists.”

Previously: Gay, lesbian, bisexual and transgendered health issues not being taught in medical school
Via ThinkProgress

Gender bias in the sciences isn’t a one-way street. When reading the previous sentence, did you imagine the street’s traffic flowed heavier in a particular direction? The peer-reviewed Stanford University project Gendered Innovations in Science, Health & Medicine and Engineering may paint a more complex and accurate picture, using sex and gender analysis as a resource to improve research and facilitate innovation. For example, as noted in a Stanford Report article, the program conducted a case study on osteoperosis in men, who often suffer from the disease later and less frequently than women but may experience more difficulty recovering from related fractures. Fortifying sex-specific research in this instance could lead to better patient care and a more nuanced understanding of the disease.

Gendered Innovations founder and director Londa Schiebinger, PhD, has collaborated with an international team to develop 11 methods for integrating tools for sex and gender analysis into science and engineering research projects. Since beginning in 2009 from start-up funding from the Michelle R. Clayman Institute for Gender Research, which Schiebinger directed from 2004-2010, Gendered Innovations also has completed 14 case studies demonstrating the benefits of using those methods.

Kathleen Sullivan writes in the Stanford Report:

The Gendered Innovations project was developed through six international workshops. In 2011, the European Union joined the project, followed by the U.S. National Science Foundation in 2012.

“The project was created through a unique international collaboration of scientists, engineers and gender experts,” Schiebinger said.

The first workshop was held at Stanford in 2011 and the seventh – and last – will be held in September in Brussels, at the headquarters of the European Commission.

Methods of sex and gender analysis in research include Rethinking Research Priorities and Outcomes, which asks scientists to consider how gender norms influence priorities, who will be the research’s beneficiaries and who will be left out, and whether new data is required to make funding-allocation decisions. Rethinking Language and Visual Representations, another of the project’s analysis tools, seeks to remove assumptions that may limit or restrict innovation and knowledge as well as those that subconsciously reinforce gender inequalities. The article continues:

“Researchers will want to consider all methods and think creatively about how these methods can enhance their own research,” [Schiebinger] said. “Our message is that researchers need to design sex and gender analysis into their project from the very beginning.”

She said research has shown that sex and gender bias can be harmful and expensive.

“Between 1997 and 2000, 10 drugs were withdrawn from the U.S. market because of life-threatening health effects, and eight of them had more severe side effects in women,” she said. “Developing those drugs cost billions of dollars and inestimable human suffering and death. So we have a very strong reason to be looking at sex and gender differences in medicine.”

Schiebinger said the same is true for technology.

Previously: Study shows many heart devices receive FDA approval without adequate testing on women and NIH awards aim to increase diversity in the sciences

On the same day that at-home HIV tests won federal approval, a Fresh Air segment on National Public Radio discussed the health epidemic of HIV among black Americans, who are disproportionately affected by the virus.

From an NPR post:

Of the more than 1 million people in the U.S. infected with HIV, nearly half are black men, women and children — even though blacks make up about 13 percent of the population. AIDS is the primary killer of African-Americans ages 19 to 44, and the mortality rate is 10 times higher for black Americans than for whites.

Guests Renata Simone, director of the new PBS Frontline documentary Endgame: AIDS in Black America, and Robert Fullilove, EdD, a professor of clinical sociomedical studies at Columbia University’s Mailman School of Public Health, and chairman of the HIV/AIDS advisory committee at the Centers for Disease Control and Prevention, joined host Terry Gross in discussing political, social and cultural factors contributing to the rapid spread of the disease seen in the last three decades.

Having recorded numerous personal stories from churches, prisons, clinics and more during the making of her documentary, Simone reported, “Right now, today in 2012, this is an epidemic of people that we recognize and, if our lives were any different, we could be.”

Previously: A call for safe sex awareness to combat HIV in China and Women underrepresented in AIDS research

Major gaps in our understanding of health disparities and their causes still exist, and one population often overlooked is Asian Americans. Now, a 5-year, $2 million grant will allow local researchers to investigate disparities in health and mortality among Asians in the U.S. Stanford’s Mark Cullen, MD, and Latha Palaniappan, MD, of the Palo Alto Medical Foundation are leading the study.

The team will comb through census and CDC data to compare major Asian sub-populations and look for health differences between recent immigrants, their children and subsequent generations. Cullen said they hope to uncover social and environmental factors that influence health disparities, and he recently spoke with me more in-depth about the work:

What kind of patterns might you find in the study of Asian Americans?

We have some reason to believe that, for example, the Japanese population has a uniquely low risk for heart disease, a somewhat higher risk for stroke, and a higher risk for cancer. Likewise the rates of cancer are somewhat high among Chinese and Vietnamese people. Conversely, we expect extremely high rates of cardiovascular disease in South Asia because this population’s rate of diabetes seems to be quite high. But these are just suspicions based on incomplete data we have.

It’s evident that some of what we think about the various populations is somewhat stereotypical and not necessarily completely right. One of the things we’re going to be trying to do is look at the complete picture. In one part of our study, we’ll be doing more analysis to understand patterns.

What are some of the difficulties involved in separating out the underlying racial or ethnic and socioeconomic factors involved in health disparities?

The number of counties where Asians reside in large numbers is still small, and the data have been available for them for only a few years, hence there are data limitations. In our last study [which examined premature mortality among whites and African Americans] we were dealing with tens and maybe hundreds of millions. Now, we are dealing with hundreds of thousands or one million - much smaller populations. And these populations also tend to live in relatively limited areas. Although places like the Bay Area, Southern California, New York and a few other large metropolitan areas are rich in these populations, many parts of the country are not. So, some questions are going to be harder to answer.

A second problem is that Asians have immigrated to the U.S. in waves so that, for example, the South Asian Americans are mostly fairly recent and there may not yet be a large enough experience to estimate premature mortality, or to compare first and later generations yet.

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A better awareness of ethnic and sexual preference-related factors is needed to improve quality of life for gay men and minorities treated for prostate cancer, according to a review published in an upcoming Nature Reviews Urology.

Researchers from the Thomas Jefferson University Hospital in Philadelphia analyzed several studies that showed differences in treatment outcomes, sexual function and coping among subpopulations including African Americans, Latin Americans, Asians and men who have sex with men (MSM). According to a release, findings showed:

• African Americans are less likely to initiate and complete treatment and less likely to trust a physician.
• Latin American men who underwent radiation therapy or a radical prostatectomy demonstrated greater levels of severe sleep dysfunction.
• Gay men are often diagnosed with prostate cancer later in life and may be reluctant to reveal their sexual preference.

Co-author Edouard J. Trabulsi, MD, commented in the release on the significance of the findings in improving the quality of life in gay men and minorities treated for prostate cancer.

Different communities of men view the effects of prostate cancer treatments very differently … It’s in the patient’s best interest for caregivers to acknowledge perceptions and expectations during the treatment decision process. They should take specific demographics, socioeconomic status, and sexual preference into consideration, and tailor an approach based on a patient’s specific concerns about the implications of various treatments.

Researchers noted that one reason for poorer quality of life among these subpopulations may also be attributed to a lack of social support group. For example, gay men typically don’t have long-term partners and may not have the same level of support at home. As a result they seek out support from other sources, but with the limited number of support groups specifically tailored for MSM with prostate cancer is limited this community may rely on Internet-based groups and could have an increased risk of becoming socially isolated.

Previously: New study advocates exercise to improve prostate cancer outcomes

It’s not every healthcare innovation summit keynote address that can make a person cry-twice, in my case. But then, not every organizing committee brings Anna Deavere Smith to campus for the occasion.

“Shifting Paradigms in Healthcare,” as the 2012 GSB Healthcare Innovation Summit was titled, took a turn from talking technology to looking realities of health care straight in the human face. Smith, an actress, playwright and professor (formerly at Stanford), joined Paul Costello, the medical school’s chief communications officer, in a conversation about current health disparities. The speakers examined issues addressed in Smith’s one-woman show Let Me Down Easy, which premiered in 2009, and Smith brought some of the characters in her play to the attention of the summit attendees through performance.

During the keynote, Smith portrayed an optimistic cowboy, a cynical doctor, a distrustful patient, a wise South African orphanage director, and Philip Pizzo, MD, dean of Stanford’s medical school, to tell their health-care stories as she interpreted them. Drawing from the 320 interviews she conducted while developing her script, Smith detailed instances in which people who sought care instead found abuse or abandonment, and others that showed that the most comforting care for the dying might not be the most scientific.

The presentation balanced the summit’s focus on industry and government innovation by bringing to light aspects of health care that aren’t measured in studies or promised to be reformed by a congressional act. Smith’s straightforward delivery let the characters’ words speak for themselves, communicating personal experiences of hardship instead of pointing fingers of blame.

Smith said, “When you have a crisis, you create narratives to tell someone what this means to you.” Though case-specific, the narratives speak to larger truths. Smith finished her series of characterizations as Trudy Howell, director of Chance Orphanage, who explains death to terminally ill children and sits with them until they depart. The Howell character comments about her approach to working with sick people this way: “In any case, don’t leave them in the dark. Don’t leave them in the dark.”

Previously: Anna of 1,000 Faces: Let Me Down Easy on PBS’ Great Performances, Dean Pizzo’s concerns about healthcare featured in solo show by Anna Deavere Smith and Let Me Down Easy

Health-care access continues to be a challenge for racial and ethnic minorities, according to two reports released today from the federal Agency for Healthcare Research and Quality.

Both reports examine data predating the Affordable Care Act, from 2002 through 2008. The 2011 National Healthcare Disparities Report (.pdf) shows that most disparities in access to health care between those years has not improved and, in some cases, has gotten worse. According to a press release:

Specifically, for 2002 through 2008, Latinos, American Indians and Alaska Natives experienced worse access to care than Whites on more than 60 percent of the access measures, while African Americans experienced worse access on slightly more than 30 percent of the access measures. Asian Americans experienced worse access to care than non-Latino Whites on only 17 percent of the access measures.

The 2011 National Healthcare Quality Report (.pdf), looks at the state of the health care system as a whole, was also released today. Its results are a little more heartening: Overall health-care quality improved slowly for the general population between 2002 and 2008. Almost 60 percent of the 250 healthcare quality measures improved, but the median rate of change was only 2.5 percent per year.

Findings from both reports emphasize that more attention is needed is several key areas: diabetes care, overall care for Southern states and disparities in cancer screening and access to care. Of the ten quality measures worsening at the fastest race, three are related to diabetes care and four are related to harm in health-care facilities due to a medication or other intervention.

Photo by Centers for Disease Control and Prevention/ Amanda Mills