Taking Spin Out of Report That Made Bad Into Good Health

WASHINGTON, Feb. 21 — The Bush administration says it improperly altered a report documenting large racial and ethnic disparities in health care, but it will soon publish the full, unexpurgated document.

"There was a mistake made," Tommy G. Thompson, the secretary of health and human services, told Congress last week. "It's going to be rectified."

Mr. Thompson said that "some individuals took it upon themselves" to make the report sound more positive than was justified by the data.

The reversal comes in response to concerns of Democrats and the Senate majority leader, Bill Frist, Republican of Tennessee. They are pushing separate bills to improve care for members of minorities.

"African-Americans and Native Americans die younger than any other racial or ethnic group," Dr. Frist said. "African-Americans, Native Americans and Hispanic Americans are at least twice as likely to suffer from diabetes and experience serious complications. These gaps are unacceptable."

President Bush's budget would cut spending for the training of health professionals and would eliminate a $34 million program that recruits blacks and Hispanics for careers as doctors, nurses and pharmacists.

On Wednesday, more than 60 influential scientists, including 20 Nobel laureates, issued a statement criticizing what they described as the misuse of science by the administration to bolster its policies on the environment, arms control and public health.

Representative Henry A. Waxman, Democrat of California, said the changes in the report on health disparities were "another example of the administration's manipulation of science to fit its political goals."

But William A. Pierce, a spokesman for the Department of Health and Human Services, said the changes had occurred as part of a "routine review process" and were not intended to minimize the problem.

The report, the first of its kind, was prepared under a 1999 law that requires officials to issue such reports every year.

The theme of the original report was that members of minorities "tend to be in poorer health than other Americans" and that "disparities are pervasive in our health care system," contributing to higher rates of disease and disability.

By contrast, the final report has an upbeat tone, beginning, "The overall health of Americans has improved dramatically over the last century."

The report was prepared by the Agency for Healthcare Research and Quality, led by Dr. Carolyn M. Clancy. Administration officials said that she and her researchers had fought hard, at some professional risk, to protect the integrity of the report, but eventually went along with the revisions.

"No data or statistics in the report were altered in any way whatsoever," Dr. Clancy said. But a close reading of the evolving report shows that some entries in statistical tables were deleted from the final version.

The final report acknowledges that "some socioeconomic, racial, ethnic and geographic differences exist." It says, "There is no implication that these differences result in adverse health outcomes or imply moral error or prejudice in any way."

But Dr. Alan R. Nelson, a former president of the American Medical Association, said a large body of evidence suggested that "unconscious biases and stereotypes among physicians and nurses may play a role in causing racial and ethnic disparities." Dr. Nelson led a study of the issue by a committee of the National Academy of Sciences.

Prof. M. Gregg Bloche of Georgetown University, a member of the committee, said: "The administration's report does not fabricate data, but misrepresents the findings. It submerges evidence of profound disparities in an optimistic message about the overall excellence of the health care system."

Dr. Sally L. Satel, a psychiatrist and scholar at the American Enterprise Institute, said that agreeing to issue the original report, "Secretary Thompson succumbed to political pressure that was applied by members of Congress who are identified with ethnic causes." Critics, she said, have grossly exaggerated the significance of changes in the report.

Among those who wanted to rewrite the report was Arthur J. Lawrence, a deputy assistant secretary of health and human services.

"The present draft remains highly focused on the health care system's supposed failings and flaws," Mr. Lawrence said in a memorandum to Mr. Thompson last fall. "In short, the report lacks balance."

Mr. Lawrence said that geography, income and other factors could be more important than race. For example, he said, whites in rural northern Maine may have worse heart problems than blacks in big cities. In addition, he said, the report should place more emphasis on "personal responsibility for one's own health status" and on "problems with the medical malpractice system."

The original version of the report included these statements, which were dropped from the final version:

¶"We aspire to equality of opportunities for all our citizens. Persistent disparities in health care are inconsistent with our core values."

¶"Compared with whites, blacks experience longer waits in emergency departments and are more likely to leave without being seen."

¶When hospitalized for heart attacks, "Hispanics are less likely to receive optimal care."

The original report included a stark, prominent statement that "black children have much higher hospitalization rates for asthma than white children." The final version included the data, without comment.

Most diseases are lifestyle issues such as diet and exercise...

I don't want to beat a dead horse, but in this argument people are bending over backwards in order to ignore the "nature" part of the "nurture versus nature" argument. No one perceives diet and exercise having much relation to asthma other than exercise induced asthma, yet the higher prevalence of asthma in minorities is siezed upon as an explanation for latent racism in healthcare outcomes.

No one decries the fact that caucasians have higher rates of osteoporosis than African-Americans, despite the fact that if someone has an osteoporotic hip fracture only 3 out of 4 will survive longer than one year, yet there's relatively greater concern for the higher rate of prostate cancer in African-American males. This is despite the fact that most men don't have very aggressive forms of prostate cancer and will probably die from a different disease. No one wants to mention that the higher level of testosterone in African-Americans helps to explain less osteoporosis and more prostate cancer. IIRC, there's no instance of eunuchs having prostate cancer. They have also done studies correlating levels of violence and testosterone levels in prison populations.

Sickle cell trait confers a survival advantage in parts of the world where malaria is endemic, but all you hear about is the awful misery of people with sickle cell disease, whom I have treated.

From the article: But Dr. Alan R. Nelson, a former president of the American Medical Association, said a large body of evidence suggested that "unconscious biases and stereotypes among physicians and nurses may play a role in causing racial and ethnic disparities." Dr. Nelson led a study of the issue by a committee of the National Academy of Sciences.

Medicine is not immune to political correctness. Quite the contrary, if the results of studies do not support the "party line" they will not be published in the Journal of the American Medical Association or the New England Journal of Medicine. They will be lucky to be published in lesser known pubications, if at all.

One wonders what the results would be if one corrected for economic levels and such factors as rural verses urban. I'll bet that would level things out considerably.

Frist is being extremely disingenuous here in order to be PC and avoid talking about the realities of diabetes as it very complicated. For all intents and purposes we're talking about what has been called Adult Onset Diabetes Mellitus, Non-Insulin Dependent Diabetes Mellitus and Type Two Diabetes Mellitus. The Type One Diabetes Mellitus is also called Insulin Dependent Diabetes Mellitus. IIRC, the latter comprise about 10% of people with diabetes, usually acquire the disease before 35 years old and require insulin injections to survive.

Adult onset diabetes is more of a phenomenon of insulin resistance in peripheral tissues to the effects of the hormone. The body requires more and more of it achieve its effect in people who are almost invariably overweight. Many people who can reduce their weight can reduce their blood glucose(sugar) levels to normal levels, such as Rush Limbaugh has admitted on the air.

Diet, exercise, the amount of insulin a person can make(it may decrease over time) and peripheral resistance to it all contribute to making this type of diabetes very difficult to manage. The metabolisms of these folks are clearly different as exemplified by the Pima Indians, who have a 50% prevalence of this diabetes, IIRC. You can check out the link I already posted on this thread. In identical twins, if one sibling has it, 90% of the time the other sibling will get it. Clearly this metabolic phenomena has its roots in the genes these folks inherited from their parents.

For unknown reasons both types of diabetes accelerate the development of atherosclerosis throughout all arteries, coronary(heart), renal(kidney) and peripheral and is the main reason for all the complications. The mangement of cholestorol levels in these individuals is such that having diabetes is equivalent as a risk factor to peripheral vascular disease or a person who already had a myocardial infarction(heart attack) without diabetes.

The socioeconomic economic argument may explain some of this disparity in health outcomes, but it also helps to spread the baloney that the beneath the skin we're all the same when the opposite should be obvious.

The rural versus urban disparity is explained not just by availabilty of doctors but also proximaty to invasive cardiologists and cardiothoracic surgeons.

Please see my comment# 8.

Here are some abstracts from PubMed. I crossed searched Ashkenazi AND (Cystic AND Fibrosis). This stuff is not easy to explain to lay people. I can understand their frustration. Prenatal testing is offered frequently to encourage abortions.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=PubMed

Crit Rev Clin Lab Sci. 2003 Aug;40(4):473-97. Related Articles, Links

Carrier testing for autosomal-recessive disorders.

Vallance H, Ford J.

Biochemical Genetics Laboratory, Department of Pathology and Laboratory Medicine, Children's and Women's Health Centre of British Columbia, Vancouver, Canada. hvallance@cw.bc.ca

The aim of carrier testing is to identify carrier couples at risk of having offspring with a serious genetic (autosomal recessive) disorder. Carrier couples are offered genetic consultation where their reproductive options, including prenatal diagnosis, are explained. The Ashkenazi Jewish population is at increased risk for several recessively inherited disorders (Tay-Sachs disease, Cystic fibrosis, Canavan disease, Gaucher disease, Familial Dysautonomia, Niemann-Pick disease, Fanconi anemia, and Bloom syndrome). Unlike Tay-Sachs disease, there is no simple biochemical or enzymatic test to detect carriers for these other disorders. However, with the rapid identification of disease-causing genes in recent years, DNA-based assays are increasingly available for carrier detection. Approximately 5% of the world's population carries a mutation affecting the globin chains of the hemoglobin molecule. Among the most common of these disorders are the thalassemias. The global birth rate of affected infants is at least 2 per 1000 (in unscreened populations), with the greatest incidence in Southeast Asian, Indian, Mediterranean, and Middle Eastern ethnic groups. Carriers are detected by evaluation of red cell indices and morphology, followed by more sophisticated hematological testing and molecular analyses. The following issues need to be considered in the development of a carrier screening program: (1) test selection based on disease severity and test accuracy; (2) funding for testing and genetic counselling; (3) definition of the target population to be screened; (4) development of a public and professional education program; (5) informed consent for screening; and (6) awareness of community needs.

PMID: 14582604 [PubMed - in process]

Obstet Gynecol Clin North Am. 2002 Jun;29(2):329-40. Related Articles, Links

Genetic screening for cystic fibrosis.

Gregg AR, Simpson JL.

Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, TX 77030, USA. agregg@bcm.tmc.edu

The importance of the recent recommendations that address cystic fibrosis carrier screening cannot be overemphasized. For the first time, a systematic approach to offering or making screening available to all pregnant women in the hopes of providing refined risk estimates for a genetic disease has been established. Caucasian of European or Ashkenazi-Jewish descent should be offered screening. Within the proposed guidelines are ethnic-specific carrier frequencies (1/29) used to establish who should be offered testing and to whom testing should be made available. Recent recommendations have made clear that in a pan-ethnic population a frequency of 1/1,000 is required for inclusion into the cystic fibrosis mutation panel. A general framework for screening during pregnancy has been established (either concurrent or sequential). It will be interesting to watch as the fruits of the human genome project are inspected and applied to everyday clinical practice. No doubt the cost of screening will be reduced through advances in technology. The combined efforts of NIH, ACOG, and ACMG have provided the first set of comprehensive standards for screening of recessive diseases. How time changes these guidelines deserves following.

Publication Types:
Review

Hum Mutat. 2001 Oct;18(4):296-307. Related Articles, Links

Improved detection of CFTR mutations in Southern California Hispanic CF patients.

Wong LJ, Wang J, Zhang YH, Hsu E, Heim RA, Bowman CM, Woo MS.

Institute for Molecular and Human Genetics, Georgetown University Medical Center, Washington, DC, USA. wonglj@gunet.georgetown.edu

Mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause cystic fibrosis (CF), a common autosomal recessive disease in Caucasians. The broad mutation spectrum varies among different patient groups. Current molecular diagnoses are designed to detect 80-97% of CF chromosomes in Caucasians and Ashkenazi Jews but have a much lower detection rate in Hispanic CF patients. Grebe et al. [1994] reported a 58% detection rate in Hispanic patients. Since then, there has been no large-scale, complete mutational analysis of Hispanic CF patients. In this study, the mutations in 62 Hispanic patients from southern California were investigated. The entire coding and flanking intronic regions of the CFTR gene were analyzed by temporal temperature gradient gel electrophoresis (TTGE) followed by sequencing to identify the mutations. Eleven novel mutations were discovered in this patient group: 3876delA, 406-1G>A, 935delA, 663delT, 3271delGG, 2105-2117del13insAGAAA, 3199del6, Q179K, 2108delA, 3171delC, and 3500-2A>T. Among the mutations, seven were out-of-frame insertions and deletions that result in truncated proteins, two were splice-site mutations, one was an in-frame 6 bp deletion, and one was a missense mutation that involved the non-conservative change of glutamine-179 to lysine. All patients presented severe classical clinical course with pancreatic insufficiency and poor growth, consistent with the nature of truncation mutation. The results indicate that TTGE screening following the analysis of recurrent mutations will substantially improve the mutation detection rate for Hispanic CF patients from southern California. Copyright 2001 Wiley-Liss, Inc.

PMID: 11668613 [PubMed - indexed for MEDLINE]

Cystic fibrosis.

Shulman LP, Elias S.

Departments of Obstetrics and Gynecology and Molecular Genetics, University of Illinois at Chicago, Chicago, Illinois, USA. lps5@cornell.edu

Although mutation detection rates have not universally reached the 95% detection level recommended by the American Society of Human Genetics and are not likely to exceed 90% for many populations in the foreseeable future, CF carrier screening will probably be offered routinely in the near future. Although CF carrier information will be of benefit to some individuals and couples, the inability of conventional prenatal diagnosis to provide definitive diagnostic outcomes to some couples, specifically those couples in which only one partner has a detectable mutation, will make for considerable anguish and concern for some. Because genetic screening and counseling is meant to provide information and alleviate concerns and fears, the potential for CF screening to result in such a contradictory effect is of a continuing concern to those who provide obstetric and genetic services. In a National Institute of Health-sponsored workshop, Menutti and colleagues recommended that those populations to which carrier screening should be offered might include individuals and couples in high-risk groups (e.g., Ashkenazi Jews, central or northern Europeans, one partner with CF, and individuals with a family history of CF) who seek preconception counseling, infertility care, or prenatal care. The workshop participants concluded, however, that before screening can be offered systematically to these individuals or couples, practice guidelines, educational materials for providers and patients, informed-consent protocols, and laboratory standards for testing must be developed. Further advances in DNA and protein analytic capabilities, such as microchip analytic systems and protein truncation assays, may make CF screening and diagnosis more accurate and less likely to result in equivocal outcomes. In addition, it is hoped that continuing improvements in CF therapies will increase the life expectancy and improve the quality of life for individuals affected with CF. Expanding our current knowledge of genotype-phenotype correlations will not only allow us better to predict clinical outcomes but also may improve our treatments for individuals with CF because more targeted therapies may be developed for CF caused by specific mutations. Nonetheless, educational and counseling issues will, for the foreseeable future, remain of critical importance to ensure appropriate clinical care to low- and high-risk individuals.

Publication Types:
Review
Review, Tutorial

PMID: 11499059 [PubMed - indexed for MEDLINE]

Their primary crime is getting a second opinion from another editor and getting caught. I'm sure you heard the expression "Lies, Damned Lies and Statistics". It appears the omissions are mainly leaving out comments on subgroup analysis. I'm not sure if you read my other comments on this thread, but I believe you may find them of value in explaining differences in morbidity and mortality, the primary ways that health outcomes are measured. Here are the last comments from the article which were the omitted items.

¶"We aspire to equality of opportunities for all our citizens. Persistent disparities in health care are inconsistent with our core values."

Bloviating BS.

¶"Disparities come at a personal and societal price."

More BS implying we're cheapskates or latent racists.

¶"Compared with whites, blacks experience longer waits in emergency departments and are more likely to leave without being seen."

Emergency rooms must take the sickest patient first. There's no diagnosis given, so if I went to the ER for a sore throat because I didn't have a primary care doc, well I would have to wait a while unless the ER isn't busy.

¶When hospitalized for heart attacks, "Hispanics are less likely to receive optimal care."

I witnessed myself declinations of invasive and surgical therapy and there was no language barrier.

They also have a higher prevalence of asthma compared to whites. They are also more likely to come from a single parent family, a parent less educated who's less likely to see the child take outpatient treatment correctly. Using inhaled medication correctly can be tricky.

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