A Million Voices

Raising Patient Voices in Obesity Research

Patient voices have been steadily rising in medical research and health policy since the mid 1990s, when people with HIV rose up to demand a place at the table in AIDS research. But a glaring exception, until recently, has been obesity research and policy. Writing in the Tennessean, patient advocate Neely Williams explains:

As an African-American woman living in the Deep South who has battled obesity for most of my adult life, I know all too well what it means to be part of an underrepresented community seeking answers to an under-researched disease.

My well-meaning doctor offered me medical advice based on research from a pool of individuals whose experience with obesity was vastly different from my own.

Williams is absolutely right. Clinical trials for obesity are terribly skewed toward white females. Males, along with ethnic and racial minorities have been woefully under-represented.

Worse, people with obesity have routinely been discounted in both research and policymaking related to obesity. For decades, an appalling amount of money and effort directed at obesity served mainly to demean the people who are living with the disease. Health plans were designed to deny people access to effective care for people with obesity.

YWM2016 Theme LogoThis sorry state of affairs is changing. Williams and others like her are stepping forward and raising their voices to demand a place at the table. Leading this effort is the Obesity Action Coalition (OAC) and its 50,000 members.

In less than two weeks, more than 500 people affected by obesity will be gathering in Washington, DC, for OAC’s fifth annual Your Weight Matters Convention. We will open with an advocacy day on August 25, including Hill visits and advocacy training.

If you’re reading this and you haven’t made your plans to join us on August 25 in Washington, correct your mistake and register right now: http://www.ywmconvention.com/.

Click here for Williams’ commentary in the Tennessean.

A Million Voices, photograph © Thomas Hawk / flickr

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August 13, 2016

2 Responses to “Raising Patient Voices in Obesity Research”

  1. August 13, 2016 at 9:04 am, David Brown said:

    Neely Williams also said, “I know all too well what it means to be part of an underrepresented community seeking answers to an under-researched disease.”

    Under-researched? It may appear so due to the dismal success rate of standard obesity interventions. But what if dietary dogma is the reason successful weight control approaches remain elusive. What if that dietary dogma prevents causes scientists to misinterpret their findings. A case in point is a recently published paper entitled “Effects of an High-Fat Diet Enriched in Lard or in Fish Oil on the Hypothalamic Amp-Activated Protein Kinase and Inflammatory Mediators”. The authors wrote, “In conclusion, our data indicate that the substitution of saturated by unsaturated fatty acids in the diet has beneficial effects on modulation of hypothalamic inflammation and function in obesity, underlying, at hypothalamic level, the interaction among insulin and/or leptin resistance, AMPK activation and hyperphagia.” http://journal.frontiersin.org/article/10.3389/fncel.2016.00150/full

    The authors failed to pay attention to the fact that lard used in laboratory experiments these days is exceedingly rich in linoleic acid. Excerpt, “When customers have asked about the fatty acid profile of our DIO series diets, we previously used fatty acid data from the USDA Nutrient Database to calculate the fatty acid profile of diets containing lard. While we believed these data to be accurate to a degree, lard is from an animal source and since we know that what the pigs are fed can potentially affect the composition of their fat, it is to be expected that there will be some variability in the lard. In November, we had a batch of our lard assayed for fatty acids. Interestingly, some of the fatty acid data differed from what is in the USDA Nutrient Database. Specifically, we found that the concentration of polyunsatured fatty acids was higher and that of monounsatured fatty acids was lower, relative to the historical USDA Nutrient Database data.”

    Here are the percentages of fatty acids in a typical batch of lard:

    Saturated (%) 33.9
    Monounsaturated (%) 37.2
    Polyunsaturated (%) 28.8
    Linoleic acid (%) 24.4

    According to my calculation, in a diet consisting of 60% lard, linoleic acid intake alone would supply nearly 15% of energy needs. This is well above the 8% used to induce obesity in this experiment. Excerpt: “Endocannabinoids are products of dietary fatty acids (FA) and were originally thought to be generated on demand, though it is now known that AEA can be stored in intracellular lipid droplets. As such, modulation of cannabinoid receptor function can occur via modification of dietary FA intake. Current dietary guidelines recommend a shift away from animal-derived fats in favour of plant fats, in an effort to reduce saturated fat intake and cardiovascular disease risk, which has resulted in an increased intake of polyunsaturated fatty acids (PUFA), especially that of linoleic acid. http://www.hindawi.com/journals/ije/2013/361895/

    The uncertainty as to what caused the obesity epidemic might vanish if scientists were to begin questioning some of the assumptions upon which interpretation of data is based. https://proteinpower.com/drmike/2016/02/03/will-the-new-dietary-guidelines-fatten-us-even-more/

  2. August 15, 2016 at 9:34 am, Allen Browne said:


    Sorry but I am unable to come to OAC this year. Keep up the good work.

    Certainly those with obesity are “part of an underrepresented community seeking answers to an under-researched disease.” And bias and stigma are powerful forces blocking any change in the situation. But then I think back 10 years and “we have come a long way, baby.”