Ted Kennedy’s contribution to health disparities research

Wow.

In a 2005 Health Affairs article describing the role of the federal government in addressing health disparities, Ted Kennedy writes:

“The state of U.S. minority health is an embarrassment to the nation. Minority communities are struggling with rising numbers of uninsured citizens, festering epidemics, and lower health care quality, all of which mean increased rates of diseases and preventable deaths.”

In the article, he acknowledges racism’s legacy—using the word “racism” once and early—and is “boggled” (as so many of us are) by how…

…the United States, with all its wealth and leadership, has been the only industrialized country in the world that does not guarantee health care to all of its citizens.

I know much has already been written about Kennedy’s life, death, and legacy, and that there are few substantive additions I could make that you wouldn’t already know.

Still, it bears repeating:

Ted Kennedy considered health care a fundamental human right. He took up struggles that weren’t his own.  He was instrumental in more than a few pieces of successful legislation that make daily life more tolerable for some of us. To some extent, this legislation includes the 2000 Minority Health and Health Disparities Research and Education Act, of which Kennedy was the lead sponsor.

“In 2000, the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) created the National Center for Minority Health and Health Disparities at the National Institutes of Health (NIH), mandated the Agency for Healthcare Research and Quality (AHRQ) to conduct research on minority health and health disparities, and directed the National Academy of Sciences to examine and report on the minority data collection practices of the Department of Health and Human Services (HHS).” (Kennedy, 2005).

As formal acknowledgement of health disparities related to race and ethnicity, the Act empowered investigations into causes and possible solutions. The MHHDREA has meant budgets and strategic plans and goals and loan repayment for young (and not-so-young) health disparities researchers.

We’ve learned a great deal since 2000. We’ve learned more about defining and measuring health disparities and about their distribution across geography and population density. We’ve also learned more about the role of social class/SES in the relationship between race and health, and that discussions downplaying race in favor of class may obscure important lessons and shroud opportunities for bridging gaps. In turn, the data has raised public awareness that some people live sicker and die faster for the social identities assigned to them.

Perhaps the most important thing I’ve learned from recent health disparities research is that differential health outcomes are as much symptoms of societal cruelty and depravation as they are indicators of the health system’s performance. I’ve also learned that tangible progress has been too slow; the research findings are too often grim.

Still, I’d like to think about the primary care physician, newly minted and middle-class—from Johns Hopkins or Howard or wherever—who will have her massive debt  (an enemy of intergenerational wealth) repaid in the pursuit of knowledge.  When I think about that, the idea that “things don’t have to be this way” seems believable.

Resources:

Kawchi I., et al. (2005).“Health Disparities By Race And Class: Why Both Matter.”

“There is room in our public discourse to address racial health disparities while in general downplaying class disparities. In other words, it is politically acceptable to promote racial equality so long as we do not draw explicit connections between race and class.”

Thompson G., et al . (2006). “Examining the health disparities research plan of the National Institutes of Health.”

“The NIH Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities is intended to provide an overarching structure and coordination for such reseach being conducted by various NIH institutes and centers. Examining the Health Disparities Research Plan of the National Institutes of Health: Unfinished Business assesses how well the plan provides needed guidance and recommends ways to improve oversight and coordination of these research efforts.”

Safe Sex and Tupperware Parties

"People need to be given not only reasons to alter risky habits but also the behavioral means, resources, and social supports to do so."

The Pittsburgh AIDS Task Force is busy making moves.

As you’ll read (or may have read), its Girlfriends Project (GP) “targets at-risk [black] women” in the Pittsburgh metro area for HIV/AIDS awareness raising, assertiveness counseling, and domestic violence education. Between January 1 and June 15, 2009, the GP had 135 women to take advantage of free, confidential HIV testing…none of the women have tested positive.

The project’s structure and organization brings the generally uncomfortable topic of HIV/AIDS (associated in the collective consciousness with sex, death, sickness, needles, loss of ability, possible social alienation, etc) into participants’ comfort zones. Seems like a great way to reduce some of the stigma and anxiety attached to HIV testing.

What’s also interesting to me is that the program leverages social networks and social support to address black women’s health issues. 

Here’s how it works (reminds me of a Tupperware Party!):

Women, usually five to eight of them but sometimes as many as 15, get together at the home of a friend, who must be able to provide a private area in which Ms. Dukes can do the HIV/AIDS swab test one woman at a time after her talk. The task force provides refreshments and the hostess receives a $50 gift card for volunteering the use of her home. The attendees get $20 gift cards.

The party starts with some ice-breaking conversation, an HIV/AIDS quiz, raffles and giveaways of things like body lotions, and the opening of gift bags containing condoms and other safe-sex products. Then comes Ms. Dukes’ educational program, in which the women learn how to protect themselves from both HIV/AIDS and domestic violence…

After the presentation, Ms. Dukes gives another quiz on HIV/AIDS to see what the women have learned. Then, she offers the HIV/AIDS swab tests. She sends the tests on to the health department for processing. If there were a positive, the result would come back to Ms. Dukes, who would inform the woman. (Pittsburgh Post-Gazette, 2009)

So far, I guess about five women have been tested per week of the program’s life (though it’s likely the actual rate of testing will increase exponentially as women tell their friends and family about the resource). While 135 women is a tiny number in proportion to the population, it’s certainly better than zero testing, which was apparently the rate in Braddock, Clairton and Duquesne before the project got going.

Verdict on this intervention: 

Backed by reasonable evidence? Check.

Gives me that “Smell of Fresh-Baked Brownie Feeling,” which is good for marketing and other outreach? Check.

Potential for far reach and influence? Debatable.

In all fairness, the program is new and small and hungry. That said, I wonder whether growth (i.e., more money) has been linked explicitly to outcomes (will there be a program evaluation?), or whether the program is more of a symbolic tool to draw necessary attention to HIV/AIDS in Pittsburgh’s black community.

While I personally believe helping even one person justifies social action, professionally, I wonder about this program’s long-term potential to affect hard outcomes–specifically, reductions in rates of new infection in target communities.

Conclusion:

I think the force of GP’s impact will hinge on the breadth of its reach, which in turn relies on the mysterious powers of family, friendship, community, and word of mouth.

Are these enough?

Additional resources:

“Views and Experiences with HIV Testing Among American Americans in the U.S.” (Kaiser “We Don’t Mess Around” Family Foundation, June 2009).

Using data from the Kaiser Family Foundation 2009 Survey of Americans on HIV/AIDS, we find that in many ways, African Americans’ reported views and experiences reflect the disproportionate impact of the epidemic on their community.  Compared with whites and Latinos, African Americans are more likely to say AIDS is a more urgent problem for their local community now than it was a few years ago, more likely to say they know someone who is infected with HIV or has died from AIDS, and more likely to say they are personally very worried about becoming infected themselves.

“Social Cognitive Theory and Exercise of Control over HIV infection” in Preventing AIDS: Theories and Methods of Behavioral Interventions. (Albert Bandura, 1994)

To achieve self-directed change, people need to be given not only reasons to alter risky habits but also the behavioral means, resources, and social supports to do so. 

“From social integration to health: Durkheim in the new millennium.” (Berkman et. al., 2000)

First, social networks via social influence or supportive functions influence health-promoting or health-damaging behaviors such as tobacco and alcohol consumption, physical activity, dietary patterns, sexual practices, illicit drug use. Second, social networks via any number of pathways influence cognitive and emotional states such a self-esteem, social competence, self-efficacy, depression and affect. Third, networks may have direct effects on health outcomes by influencing a series of physiologic pathways largely related to stress responses.

 

Maybe we can grow these people in opaque, soundproof jars?

(Getty Images) I bet NYT feels slick about this slightly manipulative picture. I feel slick about reposting it.

The Washington Times reports (gleefully) that the U.S. Commission on Civil Rights—comprising four Republicans, two Democrats, and two Independents—isn’t buying provisions in the House health care bill that attempt to address health access disparities:

In a draft of a letter the commission approved Friday, the group raises constitutional questions about giving preferential treatment to minority students for scholarships, and about favoring medical schools and organizations that have a record of sending graduates to areas with inadequate health care services.

“These programs are unlikely to reduce health care disparities among racial and ethic groups,” according to the draft letter obtained by The Washington Times. “A growing body of evidence indicates that increasing access to high-quality physicians – whatever their racial or ethnic ancestry – is the best way to mitigate such disparities.

At first glance, statements like these aren’t surprising or particularly worthy of a post: several members of the Right-dominated USCCR, including Chairman Gerald Reynolds, are stroke-triggering holdovers from the Bush administration. More importantly, the growing, generalized backlash against multiculturalism guarantees that almost any program appearing to address the cumulative effects of discrimination and racism will raise both “constitutional questions” and charges of “reverse racism.”[1]

A less dismissive reading of the article nonetheless exposes some important issues for those of us studying—and addressing—race and ethnicity-related health disparities.

Claim 1: Programs intended to recruit underrepresented groups into medical professions through scholarship programs are unlikely to reduce health care disparities.

One idea batted around frequently is that increasing the number of physicians and allied health care professionals coming from communities of color might reduce health disparities. In the media, perceptions of this strategy’s success are often linked to the idea that health outcome disparities are related to clinicians’ inability—or unwillingness—to provide quality care to people who aren’t white, educated, English-speaking, and insured.

Maybe people from underrepresented groups will provide quality health care to folks of their own kind?

Maybe we can grow these people in opaque, soundproof jars, protected from the caustic effects of systemic and internalized racism and the dehumanizing culture of medicine? They won’t know what racism and physician douchebaggery is until they get out. They also won’t have social skills or any actual medical training.

I’ll concede there’s literature to suggest that, at a population level, the Jar Program is as good a solution as diverting a few dollars from Congressional Gulfstream purchases to life-changing scholarships for needy kids of color. In fact, one massive study of racial disparities in cardiac catheterization among nearly 40,000 black and white Medicare patients, and approximately 20,000 physicians, found that black patients were referred for treatment at lower rates, regardless of physician’s race (Chen et al., 2001).

While Chen et al. took into account the race of the admitting physician and not the referring cardiologist, we might still decide that “regardless of what caused disparities in the past, ongoing disparities in care cannot simply be explained by racial differences between providers and patients” as this lady does. We might conclude that programs intended to recruit underrepresented groups into medical professions through scholarship programs are unlikely to reduce health care disparities.

I wonder though,

What happens if we assume that good communication between patients of color is nurtured by shared meanings derived from shared life experiences?

Leaving essentialist ideas of “culture” out of this, what if part of that life experience includes ways to cope with racism?

What if these coping mechanisms directly impact eating patterns, alcohol and drug use, and mental functioning?

What if these coping mechanisms and life experiences inform a clinician’s bedside manner and ability to diagnose illness?

In this case, we would want more medical professionals available who share the life experiences of their patient populations.

To my knowledge, we can’t train clinicians to share experiences and meanings they can’t even imagine.

Next:

How do patients and clinicians talk with each other?

[1] See: The Birther movement, the recently racialized health care debate, Glenn Beck-type tantrums, and the indomitable Sonya Sotomayor’s embarrassing Senate Judiciary Committee hearings.