How Much Does African-American Race Play a Role in Stroke Risk?
MINNEAPOLIS – Even though young African-Americans are at three times greater risk of a first stroke than their white counterparts, they may not be at a higher risk for a second stroke, according to a study published in the January 20, 2016, online issue of Neurology®, the medical journal of theAmerican Academy of Neurology. The study is one of the first of its kind to look at race and second stroke risk. “The interaction between black race and age appears to be remarkably different for the risk of first versus second stroke,” said study author George Howard, DrPH, with the University of Alabama at Birmingham. “There was very little difference in race for the risk of a second stroke.” The study involved 29,682 people from the REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Of those, 2,993 people had a history of stroke at the start of the study. Over the seven years of the study, 301 of them had a second stroke. Of the 26,689 people who had never had a stroke when the study began, 818 people experienced a first stroke during the study. The researchers found that among those without a stroke at the start of the study, African-Americans were 2.7 times more likely to have a stroke than the white participants at age 45, however, there was no difference at age 85. Race did not appear to increase second stroke risk for African-American participants at any age. “Almost all of the ‘traditional’ risk factors for a first stroke proved to also be a risk factor for a second stroke, suggesting that controlling these risk factors may help avoid both conditions,” said Howard. “These risk factors include heart disease, high blood pressure, diabetes, smoking, irregular heartbeat and others.” The study was supported by the National Institute of Neurological Disorders and Stroke. To learn more about stroke, visit http://www.aan.com/patients.
The American Academy of Neurology, an association of 30,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.
Health care, research failing to adapt to US’s growing multiracial population
University of Illinois at Urbana-Champaign
CHAMPAIGN, Ill. — Multiracial people who change their racial identity from a single race to multiracial over time may be healthier than their minority peers who consistently identify as monoracial, new research suggests.
Despite the U.S.’s rapidly growing population of multiracial individuals, researchers and health care systems continue to use outdated approaches to racial categorization that force people to classify themselves as monoracial, which may be masking the incidence of health conditions and obscuring disparities in health care access and utilization among multiracial populations, a University of Illinois scholar said.
Social work professor Karen M. Tabb Dina is the lead author of two recent studies that explored issues of racial identity and its impact on health care access and utilization among nearly 8,000 U.S. young people.
The subjects in both of Tabb Dina’s studies were participants in the National Longitudinal Study of Adolescent Health, one of the first surveys to allow respondents to identify themselves as multiracial using two or more racial categories, Tabb Dina said.
Participants in the Adolescent Health survey were asked about their racial background during the first wave of data collection in 1994 and again during the third wave, conducted in 2002.
Of the 7 percent of participants identified as multiracial at either wave, only 20 percent of these people selected the same racial categories both times, Tabb Dina found.
The remaining 80 percent of multiracials were either diversifiers – who switched from monoracial initially to multiracial later – or consolidators, who selected multiple racial categories originally, but switched to a single category later.
While the overwhelming majority (92 percent) of respondents consistently identified as monoracial, 2 percent of this group switched from one racial category to another, Tabb Dina found.
Diversifiers were more likely to rate their health status as “good,” “very good” or “excellent” compared with their minority monoracial peers, Tabb Dina and her colleagues found in a related study, published recently in Ethnicity and Health.
When comparing these same samples’ access to and utilization of health services in 2008, when participants’ ages ranged from 24-33, Tabb Dina found that multiracial individuals of black-white or black-Native American ancestry were significantly less likely to utilize primary care health services – disparities that remained even when Tabb Dina adjusted for health insurance status.
Co-authors on that paper were Christopher R. Larrison and Shinwoo Choi, both of the University of Illinois; and Hsiang Huang, of Harvard Medical School.
Although the Pew Research Center recently reported that the U.S. population of mixed-race adults is growing three times faster than the rest of the population as a whole, health care providers and researchers have been slow to adapt their data-collection methods to this racial diversity, Tabb Dina said.
“Even now, in 2015, medical record systems only allow patients to identify themselves using one racial category,” Tabb Dina said.
Health researchers automatically recode mixed-race patients into the least-status group, Tabb Dina said. For example, patients who indicate they are black and Native American are recoded as Native American.
“By recoding race, we’re probably masking the actual health patterns that we need to uncover,” Tabb Dina said. “We’re not tapping into these patterns and not thinking creatively on how we can address racial and ethnic health disparities. Looking carefully at how people identify themselves can give us more insight into what the underlying problems are and how they differ across racial and ethnic groups.”
Developing more nuanced approaches to racial categorization is essential to learning how multiracial individuals interact with the health care system and to addressing usage and outcome disparities, Tabb Dina said.
Racial disparities in medical outcomes have emerged as an important topic in quality healthcare. Differences in outcomes have been associated with socioeconomic status, but new data are emerging that indicate certain cancers may have differing biology based on ethnicity. Below are links for some of those studies.
Thyroid disease risk varies among blacks, Asians, whites
An analysis that included active military personnel finds that the rate of the thyroid disorder Graves disease is more common among blacks and Asian/Pacific Islanders compared with whites, according to a study in the April 16 issue of JAMA.
Donald S. A. McLeod, F.R.A.C.P., M.P.H., of the QIMR Berghofer Medical Research Institute, Queensland, Australia and colleagues studied all U.S. active duty military, ages 20 to 54 years, from January 1997 to December 2011 to determine the rate of Graves disease and Hashimoto thyroiditis (a progressive autoimmune disease of the thyroid gland) by race/ethnicity. Cases were identified from data in the Defense Medical Surveillance System, which maintains comprehensive records of inpatient and outpatient medical diagnoses among all active-duty military personnel. The relationship between Graves disease and race/ethnicity has previously not been known.
During the study period there were 1,378 cases of Graves disease in women and 1,388 cases in men and 758 cases of Hashimoto thyroiditis in women and 548 cases in men. Compared with whites, the incident rates for Graves disease was significantly higher among blacks and Asian/Pacific Islanders. In contrast, Hashimoto thyroiditis incidence was highest in whites and lowest in blacks and Asian/Pacific Islanders.
The authors write that the differences in incidence by race/ethnicity found in this study may be due to different environmental exposures, genetics, or a combination of both.
CDC: Cancer Incidence and Survival Improve; Racial Disparities Persist
Numerous states have achieved Healthy People 2020 goals for colorectal and cervical cancer incidence, and the proportion of persons with cancer who survive at least 5 years after diagnosis has reached 65%, but racial disparities in survival persist, according to a Centers for Disease Control and Prevention report.
An analysis of data from the U.S. Cancer Statistics for 2011 – the most recent data available – showed that a total of 1,532,066 invasive cancers were reported to cancer registries in the United States that year (annual incidence rate, 451 per 100,000 persons). Invasive cancers were considered all cancers except in situ cancers (excluding situ cancers in the urinary bladder) and basal and squamous cell cancers.
Incidence rates were higher for men than for women (508 vs. 410 per 100,000), and were highest among blacks (458 per 100,000). The 5-year survival rate, calculated for cases diagnosed between 2003 and 2010, was similar among men and women at 65%, but lower among blacks (60%) for every cancer site, S. Jane Henley of the National Center for Chronic Disease Prevention and Health Promotion, CDC, Atlanta and her colleagues reported in the March 13 issue of the Morbidity and Mortality Weekly Report.
Survival was highest among those diagnosed before age 45 years (81%) and decreased with increasing age.
The most common cancer reported was prostate cancer (128 per 100,000 men), followed by female breast cancer (122 per 100,000 women), lung and bronchus cancer (61 per 100,000 persons), and colon and rectum cancer (40 per 100,000 persons). Together these cancers accounted for half of those diagnosed in 2011, and 5-year relative survival in patients diagnosed with these cancers was highest for prostate cancer (97%) and breast cancer (88%), the investigators said (MMWR 2015;63:237-42).
Survival was intermediate for colorectal cancer (63%) and lowest for lung cancer (18%).
The cervical cancer incidence rate was 7.5 per 100,000 the authors noted.
A geographic breakdown shows that incidence ranged from 374 per 100,000 persons in New Mexico to 509 per 100,000 persons in Washington, D.C.
“Healthy People 2020 targets were reached in 37 states for incidence of colorectal cancer and in 28 states for incidence of cervical cancer,” they wrote, noting that this report is the first to include incidence rates in Puerto Rico; those rates were lower for all cancer sites, compared with the states and the District of Columbia (339 per 100,000 persons) – a finding that reflects screening practices and risk factors that may differ from in the states.
The inclusion of survival data is also a first and provides a basis for tracking progress.
“Cancer incidence and survival data can guide the planning and evaluation of cancer prevention and control programs,” the authors said, adding that such data can also assist in long-term planning for cancer diagnostic and treatment services, and help public health officials set priorities for allocating health resources.
Though limited by potential systematic misclassification of race and ethnicity, by the possibility that cancer reporting was delayed thus leading to underestimation of certain cancers, and by the fact that relative survival rates were calculated only for white and black racial groups due to lack of accurate life tables for other racial/ethnic groups, the findings are nonetheless important for helping public health officials to monitor cancer incidence, mortality, and survival and to identify populations that might benefit most from targeted prevention and control efforts, they said.
The findings can also help guide the planning of health care allocation and support services and track progress toward Healthy People 2020 goals, they added.
Dr. Lisa Richardson, the director of the CDC’s Division of Cancer Prevention and Control further stressed the value of monitoring cancer incidence and survival rates in a statement.
“These data are an important reminder that a key to surviving with cancer is making sure everyone has access to care from early diagnosis to treatment. We know, for example, that early detection of colorectal cancer has had the largest impact on long-term survival rates,” she said.
We are confronted with diversity on a daily basis in the practice of medicine. Patients present for evaluation of symptoms or for preventive care. The health professional takes in myriad strands of information in routine decision-making. In a broader sense, this is encompassed in the concept of personalized medicine: customized interventions based on one’s genetic makeup and/or lifestyle choices. Personalized medicine has now become sufficiently mainstream to be featured in the recent State of the Union address. Two recent papers highlight this concept for the eye care professional.1-2
Hydroxychloroquine (HCQ) is a frequently used medication in primary care. Patients on HCQ therapy for inflammatory conditions should be referred to ocular specialists for preventive eye care through monitoring for retinal toxicity; the classic finding of toxicity is parafoveal bull’s eye retinopathy. Lee and colleagues evaluated spectral domain optical coherence tomography, fundus autofluorescence, and visual field records of Koreans referred for HCQ retinal screening.1 Of interest were the 9 of 218 patients (4.1%) with toxicity, 8 of whom (89%) had a pericentral, not parafoveal, pattern of retinal change. Accordingly, screening processes may need to be adapted for patients of Asian heritage.
The more we learn about glaucoma—a leading cause of blindness in African Americans—the more we appreciate it as a multifactorial optic neuropathy. To further explore potential racial differences in underlying conditions associated with glaucoma, a retrospective analysis was conductive using ocular blood flow data from glaucoma patients of European and African descent.2 Across several measures using Doppler imaging, African Americans had significantly reduced retrobulbar blood flow compared with patients of European descent, even though no differences were found in intraocular pressure or in visual field parameters.
Race and ethnicity are often used, and sometime inappropriately used, as proxies for genetic makeup. However, as these two studies show, significant differences can exist across racial boundaries. This allows for wider consideration of the possibilities that exist in screening approaches or pathologic mechanisms. This is an important first step in realizing the promise of personalized medicine.
HPV, or the human papillomavirus, is a sexually transmitted disease that’s estimated, according to a landmark study in 2008, to be linked to a huge swath of cancers: up to 40 percent of vulvar, 60 percent of vaginal, and 80 percent of anal cancers can be traced back to it, plus most of the incidences of genital warts. So a nine-strain vaccine must be very, very good for everybody. Right?
Let’s break one thing down first: the human papillomavirus isn’t actually a single virus at all. It has up to 100 different strains or types. They’re all handily numbered, for our convenience, and are sorted into “high grade” and “low grade.” High grade HPV means that HPV cells carry a high risk of developing into cancer, while low grade cells may just go back to normal on their own. If you’ve ever had a Pap smear with abnormal results, somebody has (hopefully) explained this to you.
But there’s another aspect to HPV subtypes, as the strains are called: who gets what seems partially determined by racial background. Research in the past few years has shown that, in the American population, women most often get HPV subtypes 16, 18, 56, 39, and 66, while black women most often contract HPV subtypes 33, 35, 58, and 68. See a lot of crossover there? Neither do we.
“I endured the three painful shots — and thought it was a form of punishment for not using condoms — never knowing that Gardasil may not have been the correct option for me,” Evette Dione wrote for Bustle when she discovered her own HPV-positive status. ”Had there been funding for a vaccine specifically designed for my black, female body, a shot that protects my body as well as it does white women, I might very well be HPV-free today.”
This is a hideous situation — but it’s one which the new HPV vaccine is trying to (partially) improve. The new shot is designed to target HPV types 31, 33, 45, 52, 58, 6, 11, 16 and 18. Two of these are on the list of types most commonly found in black American women: 33 and 58. Both are “high grade” HPV subtypes, likely to lead to cancer (58 has been found in a high proportion of Chinese sufferers of cervical cancer, too). So: dancing in the streets. Right? Not so fast.
Hopefully, with this first nine-strain vaccine approved by the Centre For Disease Control this month, black American women will begin to be (at least partially protected) by their HPV vaccinations. But there continues to be resistance to tailoring vaccine study to particular races, and a blame game has started that goes something like this: that not enough scientists are including different races in their HPV studies, that not enough black women are volunteering for experiments, that studies ignoring “low grade” subtypes as less important, the list goes on.
And, despite both the FDA and CDC’s approval, the timeline for when the nine-strain vaccine will become available remains hazy.
But this is urgent. Four of the HPV subtypes that Duke identifies as common in black women are classified as “high grade,” and two of them still have no vaccine. Gardasil and Cervarix, which have been on the market since 2008, have failed thousands of black American women; research into vaccines that target high grade subtypes across the entire racial spectrum would go at least some way towards fixing that.
Perhaps understandably, Duke’s findings didn’t go down well. The developers of Gardasil argued that 16 and 18 are the ones responsible for 70 percent of all HPV-related cancers — which was the conventional wisdom — but Duke’s scientists maintained that more subtypes were involved. And while the scientists bickered, more and more black American women were getting a vaccine that, it turned out, wasn’t targeted at their most common foes at all. (There have, as of yet, been no studies published of the HPV subtypes typically contracted by women in other parts of the world, and Gardasil and Cervarix remain the global go-tos for HPV vaccines — including in developing countries, where 85 percent of worldwide deaths from cervical cancer occur.)
As of right now, nobody’s announced any studies into why American black and non-Caucasian women sustain different HPV subtypes, and it’s likely because of this worry; scientists who tried to delve into the area might be unlikely to get funding from squeamish authorities. But without understanding the real roots of the divide, it may be tricky for scientists to develop more targeted vaccines.
Fortunately, there’s hope in other areas of medicine even for those whose common strains aren’t covered by the latest vaccine. In Mexico, a treatment has been authorized by the government that treats women who already have HPV with a therapeutic vaccine, and it’s been a big success in clinical trials: every subject either had their HPV cells massively diminish, or saw them vanish entirely.
If the race card proves too difficult for science to manage, this may be the way the game goes: just let people get HPV, and treat them for it afterwards. But surely an ounce of prevention is still better than a pound of cure — and every woman deserves to be protected.
New research finds biological differences in tumor type, behavior
Your chances of being diagnosed with early breast cancer, as well as surviving it, vary greatly depending on your race and ethnicity, a new study indicates.
“It had been assumed lately that we could explain the differences in outcome by access to care,” said lead researcher Dr. Steven Narod, Canada research chair in breast cancer and a professor of public health at the University of Toronto. In previous studies, experts have found that some ethnic groups have better access to care.
But that’s not the whole story, Narod found. His team discovered that racially based biological differences, such as the spread of cancer to the lymph nodes or having an aggressive type of breast cancer known as triple-negative, explain much of the disparity.
“Ethnicity is just as likely to predict who will live and who will die from early breast cancer as other factors, like the cancer’s appearance and treatment,” Narod said.
In his study, nearly 374,000 women who were diagnosed with invasive breast cancer between 2004 and 2011 were followed for about three years.
The researchers divided the women into eight racial or ethnic groups and looked at the types of tumors, how aggressive the tumors were and whether they had spread.
During the study period, Japanese women were more likely to be diagnosed at stage 1 than white women were, with 56 percent of Japanese women finding out they had cancer early, compared to 51 percent of white women.
But only 37 percent of black women and 40 percent of South Asian women got an early diagnosis, the findings showed.
When the researchers calculated the seven-year risk of death, black women had the highest risk, with a 6 percent death rate. South Asian women (Asian Indian, Pakistani) had the lowest, at less than 2 percent.
And black women were nearly twice as likely as white women to die following the diagnosis of small tumors, according to the study published Jan. 13 in the Journal of the American Medical Association.
The new research “makes significant strides in explaining the well-known racial disparities in breast cancer,” said Dr. Bobby Daly, a hematology-oncology fellow at the University of Chicago Medical Center. He co-authored an editorial that accompanied the study.
“It makes strides in showing how the difference in survival may reflect intrinsic differences in the biology of the tumor,” he added.
However, there still needs to be improvements in access to care, treating women according to established guidelines and avoiding treatment delays, Daly noted.
Regardless of race or ethnicity, women should be aware of any family history of breast cancer, be aware of other risk factors they may have, and obtain appropriate screening with mammograms, he said.
Women in minority groups must also be included in greater numbers in future research, the authors of the editorial said.
With Ashkenazic Disorders Getting All the Attention, America’s Sephardic Jews Often Lack Specialized Screening Programs
Randall Belinfante was a bit baffled.
When he and his wife went to take blood tests in preparation for starting a family in 2003, he discovered that the screening included a panel of tests for Ashkenazic Jewish genetic disorders. But Belinfante is Sephardic.
“We told them at the time that we were not Ashkenazi, but they told us they don’t do testing for Sephardic diseases, just for Ashkenazi ones,” recalled Belinfante, who traces his ancestry to the Iberian Peninsula via the Balkans, Holland and England. “So they went ahead and did the Ashkenazi tests anyway.”
With a note of bemusement, Belinfante, who is the librarian and archivist at the New York-based American Sephardi Federation, added, “Surprisingly enough, they found we did not have any of the Ashkenazi Jewish diseases.”
Since screening for Tay-Sachs disease began close to 40 years ago, Ashkenazic Jews have dominated the scene when it comes to Jewish genetic disorders. Having been reproductively isolated for centuries — and having grown from just a handful of founders into a population of millions in a relatively short span of time — Ashkenazic Jews are a relatively homogeneous group that has inherited a host of rare genetic disorders and has proved to be a rich source of information for geneticists.
But what about the others in the Jewish community? What about Sephardic Jews? Are they also susceptible to a unique group of genetic disorders rarely shared by other groups? Does a Sephardic couple planning on having children also need to be screened for certain diseases?
“There is no disease that you can call a Sephardic genetic disease,” said Rabbi Elie Abadie, who is a physician and director of the Jacob E. Safra Institute of Sephardic Studies at Yeshiva University. Why this would be so and what this means — as is so often the case with genetics — has as much to do with history as with biology.
“Non-Ashkenazi Jews are collectively much more diverse than Ashkenazi Jews,” explained Aviva Ben-Ur, a professor in the Judaic and Near Eastern Studies department at the University of Massachusetts Amherst who authored the new book “Sephardic Jews in America: A Diasporic History” (NYU Press).
The term “Sephardic” itself often tends to obscure this diversity. At its root, the word refers to Jews who can trace their origins back to the Iberian Peninsula, but it is often used as a catchall label for any Jew who is simply not Ashkenazic. Although even many non-Ashkenazic Jews themselves may employ the label, it glosses over a diversity of communities stretching from the Balkans, to North Africa, to the Arab world, to the Caucasus and beyond. The genetic picture is not far behind.
“You can’t say ‘Sephardic genetic diseases,’ because most of the disorders are specific to the community of birth,” said Dr. Joël Zlotogora, a professor of human genetics at the Hebrew University of Jerusalem and an expert in the field of Jewish population genetics. “Moroccan Jews are different from Tunisian Jews and so on. For non-Ashkenazi Jews you have to look by country of birth.”
In Israel today, where non-Ashkenazic Jews represent a much larger proportion of the Jewish population than they do in North America, the medical establishment is very attuned to this reality. When an Israeli Jew comes for genetic screening, if the individual is not Ashkenazic, he or she is tested for the disorders known to exist among the Jews within his or her country of origin or the country of origin of the individual’s parents or grandparents and great-grandparents.
Several years ago, Israel’s Ministry of Health put up a Web site dedicated to genetics that publishes a list of disorders. A quick review of the list reveals the distinctions and distinctiveness of which Zlotogora speaks. Separate lists exist for Ashkenazic Jews, as well as for Algerian, Libyan, Tunisian, Moroccan, Iraqi, Iranian, Syrian, Yemenite, Kurdish, Bukharan, Georgian, Indian, Ethiopian, Caucasian and Karaite Jews.
There are a small number of disorders listed that are shared across several communities, in particular among Jews from North Africa. These diseases, explained Zlotogora, became common because they conferred some advantage to a person who is just a carrier — i.e. has one mutated and one healthy gene — for the disease but does not get sick. Beta-thalassemia and glucose-6-phosphate dehydrogenase deficiency (G6PD), both blood disorders that can cause certain types of anemia, are prime examples. Being a carrier for one of these diseases provides some protection against malaria.
Like their Ashkenazic counterparts, non-Ashkenazic communities developed unique sets of genetic disorders because they were isolated reproductively from the populations around them. But they were also, for the most part, isolated geographically and thus reproductively, from each other. The acceptance of marriage between relatives, even between first cousins, also contributed to the spread of some genetic mutations, as it did in the Ashkenazic world.
According to a 2001 survey by the World Sephardi Federation, non-Ashkenazic Jews account for approximately 26% of world Jewry. In Israel today, they are about half of the Jewish population. Their sizable presence since Israel’s founding has led to a growth in the study, understanding and awareness of the genetic disorders affecting their communities. “With time we have more and more disordersamong non-Ashkenazim that we are able to test for,” Zlotogora said.
Statistics on the number of non-Ashkenazic Jews in the United States are more difficult to come by. Those that do exist, explained Ben-Ur, “are not based on any kind of systematic survey.” The World Sephardi Federation survey estimates that only 4.5% of American and Canadian Jews are not Ashkenazic. But some have claimed that this estimate may be too low.
Most of America’s non-Ashkenazic Jews arrived over the past half-century from the Middle East and Central Asia. “Because they make up a very small percentage of American Jewry, much more attention is paid to Ashkenazi Jews in all areas of society,” said Abadie, who is also the founding rabbi at Congregation Edmond J. Safra in New York. This, he said, includes the area of genetic disorders.
It was just last month that the United States got its first genetic-disease screening program tailored to a specific non-Ashkenazic Jewish community. In mid-July, the Medical Genetics Institute at the Cedars-Sinai Medical Center in Los Angeles began a population-based program to screen Iranian Jews for four genetic disorders that occur with relative frequency in that community.
Beyond the program at Cedars-Sinai, however, someone trying to find information in the United States on genetic disorders for specific non-Ashkenazic communities would be a bit hard-pressed.
The American Sephardi Federation puts out a list of four diseases under the title “Sephardic Recessive Disorders,” and several Jewish genetic screening centers around the country list the same four disorders on their Web sites. These four diseases — beta-thalassemia; G6PD; familial Mediterranean fever (FMF), which causes recurrent fevers and rashes; and glycogen storage disease type III (GSD III), a severe metabolic disorder — are shared across several non-Ashkenazic communities in the Mediterranean basin and North Africa.
Yet they, too, are “erroneously called Sephardic genetic diseases,” said Abadie, because “they are diseases that manifest themselves in Sephardic Jews also.” Beta-thalassemia, G6PD and FMF are found among many populations in North Africa and the Mediterranean. And GSD III is present in other North African groups, as well.
Dr. Harry Ostrer, director of the Human Genetics Program at New York University Medical Center and a leading scholar of Jewish genetics, called this list “incomplete.”
“There is a noticeable gap in the availability of testing for Ashkenazi and non-Ashkenazi Jews” in the United States, said Ostrer, who in 2007 initiated a mapping of the Jewish genome akin to the Human Genome Project called the Jewish HapMap Project. “We’re going to have to come to grips with it pretty soon.”
When a non-Ashkenazic Jew comes to NYU’s genetics unit for screening, the staff devises a panel based on the person’s community of origin. But for some conditions it is simply not possible to find an American lab equipped to conduct the necessary test, Ostrer noted.
An informal survey by the Forward of Jewish genetic screening centers found that although many provide counseling for the four disorders commonly listed as “Sephardic,” they cannot perform the tests themselves.
“We help them, but we can’t do the testing for the Sephardic diseases through the Victor Center,” said Faye Shapiro, a genetic counselor at the Victor Center for Jewish Genetic Diseases at the Albert Einstein Medical Center in Philadelphia. The Victor Centers, of which there are three — in Philadelphia, Miami and Boston — offer screening for Jewish genetic disorders at substantially reduced rates. Their lab, however, doesn’t test for non-Ashkenazic diseases, so such tests must be sent out to commercial labs at full cost.
Shapiro went on to explain that, whereas many Ashkenazic diseases are life-threatening or very debilitating, both FMF and G6PD — so common across populations that most American hospitals screen newborns for it — can be made livable with the proper treatment and precautions. In the United States, tests for thalassemia, a disease that can become quite severe as it progresses, are also readily available, given the disease’s presence among all Mediterranean populations. GSD III is very severe, but it is extremely rare in the United States, she added.
The relative lack of attention paid to recessive disorders among non-Ashkenazic communities in the United States may be due, in part, to attitudes within the communities themselves. “They like to be private about their lives. They like to be anonymous,” Abadie commented. Abadie, who is part of the Syrian community, said that when leaders of his community were asked to participate in the Jewish HapMap Project, they declined. He added that reluctance about testing remains strong, because uncovering a carrier may stigmatize a family. “The Sephardic community is close-knit and families know each very other well,” and therefore, he added, the communities feel they know which families are carriers for certain diseases.
Ostrer, however, said that scientists would take issue with this reasoning, because since carriers do not get the disease, “you can’t rely on family history. That’s the whole point of screening.”
In speaking with Syrian, Iranian, Bukharan and other non-Ashkenazic Jewish groups for the HapMap project, Ostrer said that he and his colleagues found there to be “considerable interest” in screening.
“I think we need to be doing it,” he concluded, adding that he hopes to begin offering tailored programs soon. “We treat them as very distinct communities. I hope that others will do so in the future as well.”
How Lung Cancer Is Treated Often Based On Insurance, Race And Medical Facilities
Unfortunately, not all patients receive the same medical care. Insurance, income and geographic locations can play a role in treatment and access to doctors.
Recent findings published in the Journal of Thoracic Oncology show that African Americans, Hispanics and those who receive community hospital care are significantly less likely than other patients to receive treatment for early stage non-small cell lung cancer.
“We found significant disparities for treatment of a curable cancer based on race, insurance status, and whether or not treatment was at an academic or community hospital,” said lead study author Dr. Matthew Koshy, a physician in the department of radiation oncology at the University of Illinois at Chicago College of Medicine, and lead author of the study, in a news release. “Reducing these disparities could lead to significant improvements in survival for many people with inoperable early stage lung cancer.”
The study is the first to examine patients with stage 1 non-small cell cancer. Treatment during the early stages offers the best chances for long-term survival. However, findings revealed that African Americans 40 percent less likely to be treated with conventional radiation treatments. Furthermore, Hispanics were 60 percent less likely to be treated with the same help.
Findings also revealed that patients were about two-and-a-half times more likely to receive SBRT in academic hospitals than in community ones and seven times more likely to receive SBRT at a high-volume medical center than at a low-volume center.
Researchers concluded that better access to medical facilities could help with doctors and treatments to those in need, as well as targeting health problems during their early stages.