US Ethnicity and Cancer, Learning from the World (B Blauvelt Innovara)
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A presentation on cancer and ethnicity in the United States, and how the US can learn from other countries in regards to cancer control. - by Barri Blauvelt, CEO, Innovara, Inc.

A presentation on cancer and ethnicity in the United States, and how the US can learn from other countries in regards to cancer control. - by Barri Blauvelt, CEO, Innovara, Inc.

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  • Oncologists appear to communicate differently with breast cancer patients, depending on the women&apos;s race, age, and other factors: Researchers audio-taped initial consultations between 58 oncologists at 14 practices with 405 women newly diagnosed with breast cancer and conducted interviews with patients and physicians immediately before and after the visits. They found that oncologists spent more time engaged in building relationships with white patients than with members of other racial/ethnic groups. The women who asked more questions were younger, white, had more education, and had a higher income. Physicians tended to ask these women more questions than they did other women. Racial differences occurred in almost every communication category examined, potentially leading to disparities in breast cancer outcomes. <br /> Source: Siminoff, Graham, and Gordon, Patient Educ Counsel 62:355-360, 2006 (AHRQ grant HS08516). <br /> Poor communication of mammogram results may explain disparities in breast cancer diagnosis and outcomes: Researchers surveyed 411 black and 734 white women who had screening mammograms at five hospital-based facilities in Connecticut between 1996 and 1998 and found no difference between the two groups of women in the proportion of abnormal screening mammograms. However, communication of mammogram results was problematic for 14.5 percent of the women; 12.5 percent had not received their results, and 2 percent had received their results but their self-report differed from the radiology record. Inadequate communication of mammogram results was nearly twice as common among black women as among white women <br /> Source: Jones, Reams, Calvocoressi, et al., Am J Public Health 97(3):531-538, 2007 (AHRQ grant HS11603) and Dailey, Kasl, Holford, and Jones, Am J Epidemiol 165(11):1287-1295, 2007 (AHRQ grant HS15686). <br /> Poor, minority, and uninsured individuals have reduced access to screening and surgery for colorectal cancer: Three studies supported by AHRQ examined trends in colorectal cancer screening and access to surgery and found that low-income/poor individuals, the uninsured, and minorities are screened less frequently than others for colorectal cancer, and they are more likely to need emergency surgery for colorectal cancer-related problems such as bowel perforation, peritonitis, or bowel obstruction. Also, patients who were black, Hispanic, Asian, or less affluent and those who had more advanced colorectal cancer were more likely than white, more affluent, and less severely ill patients to have surgery for the condition at hospitals with above average mortality rates. The researchers conclude that there continue to be barriers to highquality surgical care for minority individuals with colorectal cancer, independent of other patient characteristics. <br /> Source: Phillips, Liang, Ladabaum, et al., Medical Care 45(2):160-167, 2007 (AHRQ grants HS10771 and 10856); Diggs, Xu, Diaz, et al., Am J Manag Care 13(3):157-174, 2007 (AHRQ grant T32 HS00059); Zhang, Ayanian, and Zaslavsky, J Qual Health Care 19(1):11-20, 2007 (AHRQ grant HS09869). See also Guerra, Dominguez, and Shea, J Health Commun 10:651-663, 2005 (AHRQ grant HS10299). <br /> Study examines effects of perceived racial discrimination in adherence to screening mammography guidelines: Researchers examined receipt of index mammograms at one of five urban hospitals in Connecticut between 1996 and 1998 among 484 black women and 745 white women to identify any links between perceived racial discrimination and black women&apos;s adherence to screening mammography guidelines. About 42 percent of black women and 10 percent of white women reported discrimination at some point in their lives, but this perceived discrimination was not associated with nonadherence to age-specific mammography screening guidelines, even after adjusting for other factors. The researchers caution that black women in the study may have underreported discrimination due to the sensitive nature of the topic and their discomfort in talking about it with white phone interviewers. If this is the case, these findings may underestimate its prevalence and effects on regular mammography screening. <br /> Source: Dailey, Kasl, Holford, and Jones, Am J Epidemiol 165:1287-1295, 2007 (AHRQ grant HS15686). See also Jones, Reams, Calvocoressi, et al., Am J Public Health 97(3):531-538, 2007 (AHRQ grant HS11603); Rauscher, Hawley, and Earp, Prev Med 40:822-830, 2005 (AHRQ grant T32 HS00007). <br /> Oncologists appear to communicate differently with breast cancer patients, depending on the women&apos;s race, age, and other factors: Researchers audiotaped initial consultations between 58 oncologists at 14 practices with 405 women newly diagnosed with breast cancer and conducted interviews with patients and physicians immediately before and after the visits. They found that oncologists spent more time engaged in building relationships with white patients than with members of other racial/ethnic groups. The women who asked more questions were younger, white, had more education, and had a higher income. Physicians tended to ask these women more questions than they did other women. Racial differences occurred in almost every communication category examined, potentially leading to disparities in breast cancer outcomes. <br /> Source: Siminoff, Graham, and Gordon, Patient Educ Counsel 62:355-360, 2006 (AHRQ grant HS08516). See also Carter, Zapka, O&apos;Neill, et al., Palliat Support Care 4:257-271, 2006 (AHRQ grant HS10871). <br /> Racial disparities in receipt of breast-conserving therapy among women with early-stage breast cancer: According to this study, Japanese and Filipino women in Hawaii are much less likely than white women to undergo breast-conserving therapy for early-stage breast cancer. Researchers linked data from the Hawaii Tumor Registry to census and health care claims data and then retrospectively analyzed breast cancer management of 2,030 women (935 Japanese, 144 Chinese, 235 Filipino, 293 Hawaiian, and 423 white women) who were diagnosed with early breast cancer in Hawaii from 1995 to 2001. The researchers note that ethnic differences (e.g., small breast size) and cultural preferences may explain some of the observed differences. <br /> Source: Gelber, McCarthy, Davis, and Seto, Ann Surg Oncol 13(7):977-984, 2006 (AHRQ grant HS11627). <br /> Less effective treatment and lower socioeconomic status may account for disparities in breast cancer survival: Researchers studied more than 35,000 Medicare-insured women with early-stage breast cancer for as long as 11 years and found that black women were more likely than white women to live in the poorest census tract quartiles. Also, more black women (15.7%) received breast-conserving surgery without follow-up radiation therapy than white women (12.4%), Hispanic women (11 percent), and Asian women (7.9 %). Since the recommended therapy for early-stage breast cancer is breast-conserving surgery plus radiation, these treatment differences could have contributed to disparities in survival, suggest the researchers. <br /> Source: Du, Fang, and Meyer, Am J Clin Oncol 31(2):125-132, 2008 (AHRQ grant HS16743). <br /> Minority women are less likely than white women to receive adjuvant therapies following breast cancer surgery: Women with breast cancer do not consistently receive adjuvant treatments—such as radiotherapy following lumpectomy and chemotherapy for ER-negative tumors—that have been shown to increase survival. However, a survey of surgeons at 6 New York hospitals treating 119 women who did not receive guideline-recommended adjuvant therapy found that minority women were more likely than white women (73% vs. 54%) not to receive adjuvant treatment, as were women who were uninsured or had Medicaid coverage compared with those who had Medicare or private insurance (54% vs. 19%, respectively). <br /> Source: Bickell, LePar, Want, and Leventhal, J Clin Oncol 25(18):2516-2521, 2007. See also Bickell, Wang, Oluwole, et al., J Clin Oncol 24(9):1357-1362 (AHRQ grant HS10859). <br /> Study finds disparities in receipt of chemotherapy following ovarian cancer surgery: Clinical guidelines have recommended since 1994 that all women diagnosed with ovarian cancer stage IC-IV or higher receive chemotherapy following surgery to remove the cancer. This study of more than 4,000 black and white women aged 65 or older who were diagnosed with stage IC-IV ovarian cancer found that white women were more likely than black women to receive chemotherapy after surgery (65 percent vs. 50 percent, respectively), although survival rates did not differ between the two groups of women. Women with higher socioeconomic status (SES) had increased use of both surgery and chemotherapy, and women in the lowest quartile of SES were more likely to die than those in the highest quartile of SES. <br /> Source: Du, Sun, Milam, et al., Int J Gynecol Cancer 18(4):660-669, 2008 (AHRQ grant HS16743). <br /> Socioeconomic barriers exist to timely diagnosis and treatment of prostate cancer in black men: Researchers identified 207 black men and 348 white men recently diagnosed with prostate cancer from the North Carolina Cancer Registry. They found that black men were younger and had less education, job status, and income than white men. Although black men and white men had to travel similar distances for health care, black men still had less access to care. They also had poorer health insurance coverage and less continuity of care than white men, used more public clinics and emergency wards, expressed less trust in their physicians, and were more likely to skip physician visits that they felt they needed. The researchers conclude that barriers to early diagnosis and appropriate care for prostate cancer among black men are related more to socioeconomic position than to lack of education or cultural misunderstanding. <br /> Source: Source: Talcott, Spain, Clark, et al., Cancer 109(8):1599-1606, 2007 (AHRQ grant HS10861). <br />
  • Mistrust: The historical mistreatment faced by groups such as African-Americans and Puerto Ricans has resulted in mistrust of research and the medical system, and ultimately, underrepresentation.17,18 <br /> Lack of awareness: A national survey of cancer patients found that 85% of respondents were unaware that participating in a clinical trial was an option for them.19 <br /> Cultural barriers: Certain cultures’ non-Western views of health and disease may make clinical trials a less desirable option.20 <br /> Language/Linguistic differences: Many U.S. clinical trials require English proficiency for potential participants, automatically excluding those who do not speak the language.21 <br /> Low literacy: The complexity of consent forms and other clinical trials materials may also be a barrier to those individuals with low literacy.22 <br /> Socioeconomic obstacles: Underrepresented populations are more likely to encounter social and economic barriers to participating in clinical trials. Unreliable transportation and living in remote areas may prevent many otherwise eligible patients from participating in clinical trials. Some low income groups have decreased participation due to competing issues such as unpaid work leave and lack of childcare.23 <br /> Cost/Lack of insurance: Costs associated with clinical trials are often a concern for potential participants. A study of NCI sponsored cancer treatment trials found that uninsured patients represented only 5.4% of all clinical trial participants.15 Even when participants have insurance coverage, many cannot participate due to high out of pocket expenses not covered by their benefit plan.24 <br /> Study design eligibility criteria: Traditional clinical trial eligibility criteria typically limits participation of patients suffering from more than one health condition, which in turn often excludes the elderly, members of racial/ethnic groups, and patients with lower socioeconomic status.25,26 <br /> Participants are also often excluded from clinical trials due to characteristics, preferences, and circumstances of the physicians who conduct or refer patients to clinical trials <br /> Lack of minority investigators: 2004 data show that only 12% of all U.S. physicians are African American, Hispanic/Latino, Asian, or Native American. Yet, these minority groups make up more than 30% of the U.S. population.27 Minority patients often choose physicians of their own background, but minority physicians are underrepresented as investigators for clinical trials in the United States. Physicians with access to minority patients could be an important source of racial and ethnic minority trial participants.28,29 <br /> Lack of physician referral: Although physician referral is one of the most effective means of recruiting patients to clinical trials, some physicians may be reluctant to refer because they perceive an excessive administrative or financial burden to their practice. Physicians may also hesitate to inform patients of trials based on their own attitudes and beliefs about trials and their assumptions about patient eligibility to enroll according to factors such as age, other existing conditions, cost, or ability to adhere to study protocol. 30, 31 <br /> Lack of physician awareness: Primary care and specialty physicians who are not affiliated with research institutions may be less aware of patient eligibility for clinical trials. Lack of awareness is one of the most common reasons physicians fail to refer patients to trials. 32,33 <br />
  • Access: In the access category, significant variation was identified on the dimensions of patient costs and disparities and, to a lesser extent, for the dimension of cost-effectiveness. <br /> Capacity: The propensity of issues related to capacity was relatively stable across the regions, with the exception of the need for better statistics and related data on breast cancer and a country’s infrastructure relative to managing breast cancer. <br /> Research: In the research category, etiology was relatively common across the regions, but significant variance existed in other dimensions such as personalized medicine, need for more locally relevant guidelines (including focus on younger women), participation in international research and better communications. <br /> Advocacy: For advocacy, the quality-of-life and metastasis dimensions were statistically similar across the four regions. Differences were identified for the need to improve, empowerment, increasing attention to survivorship and organization of advocacy nationally. <br />
  • What can the US learn from smaller, lesser resourced countries that participated in the study? <br /> First, and potentially the most controversial, is “ removing barriers”. This needs to start by providing access to early detection and screening via public and private means, as the cost of cancer if caught early is far lower than if caught in later stages. In some countries, where the populations are not responsive to or are fearful of public screening, or where the cost of large scale public screening efforts would be prohibitive in cost or may not be best use of limited resources, a far more effective approach is ”mother-sister-daughter” or “father-brother-son” screenings. (Once one person is identified as having cancer, he/she would be encouraged to bring in or suggest immediate relatives be screened for similar risk.) In France, all cancer screening is free to all citizens and public health care workers are measured on their achievement of assigned populations to be screened. In Taiwan, one of the few Asian countries where the incidence of breast cancer morbidity is among the lowest in the world, all 12 year old girls are taught breast care and early detection in public school. <br /> Removing barriers also means ensuring that health insurance and providers ensure all patients have access to cancer diagnosis, therapy and care as established by national guidelines. In Singapore, one of the most highly rated and cost effective health care systems in the world, health insurance is an elegantly simple and cost-effective system: each person is required to put a minimum percentage of one’s income into a tax deferred medical fund. A small percentage of that fund is allocated to help the government pay for the uninsured. The balance, like any money market fund or CD, accrues interest. When needed, it can be drawn upon for any health care expense. Should a person run out of funds, other family members may contribute from their funds. And most countries, when a person who is not a legal resident and is not insured presents with cancer or other serious condition, will immediately assist that individual to return to their home countries where national health or other insurance and care is provided to its citizens. <br /> In short, US may look to other countries – even ones as small as Singapore – for creative solutions to reduce, not increase, the cost of quality cancer care. <br />

US Ethnicity and Cancer, Learning from the World (B Blauvelt Innovara) Presentation Transcript

  • 1. U.S. Ethnicity and Cancer: Learning From the World Barri M. Blauvelt CEO, Innovara, Inc. www.innovara.com October 16, 2013
  • 2. In 2009, President Barack Obama called for a new, In 2009, President Barack Obama called for a new, integrated global health strategy and for “…a new effort integrated global health strategy and for “…a new effort to conquer a disease that has touched the life of nearly to conquer a disease that has touched the life of nearly every American, including me, by seeking a cure for every American, including me, by seeking a cure for cancer in our time.”11 cancer in our time.” 1) Dunham, Will. “Obama cancer cure vow requires more funds: experts.” Reuters. Feb. 25, 2009. Available at: http://www.reuters.com/article/healthNews/idUSTRE51O7JC20090225 Picture: http://www.ncrr.nih.gov/strategic_plan/online_version/images/people-map.jpg
  • 3. This presentation:  Demographics of cancer and global impact  Cancer in different ethnic groups  Ethnic challenges in research  Influence of Health Insurance and SES  Prevention and Obesity  A Potential Model for National Cancer Control
  • 4. Cancer - a Growing Problem  Cancer 2nd leading cause of death in world2; soon to be No. 1  In past 30 years, the burden of cancer has doubled2  30% growth in new cancer cases by 20203  2/3 of new cases from lower- and middle-income countries.2, 3  Estimates suggest global economic impact exceeds US $300 Billion 3 2) Boyle and Levin (eds.). World Cancer Report 2008, Lyon: International Agency for Research on Cancer, 2008. 3) New cancer cases will grow 30% by 2020; current year estimates suggest global economic impact exceeds US $300bn. Economist Intelligence Unit, 2009. Downloadable at www.eiu.com_info.com
  • 5. Inequitable Allocation Of Cancer Resources  Only 5% of resources invested in developing world.3  Less than 15% of clinical research spending in developing world4  3 major sources account for 2/3 of research funding5 :  US Government - 34%  Top 24 pharmaceutical companies - 22%  EU health care and university systems - 10% “The irony and the tragedy is that around the world “The irony and the tragedy is that around the world the policy community in conjunction with medical the policy community in conjunction with medical providers already can do much to control this providers already can do much to control this devastating disease.”66 devastating disease.” 4) Clinicaltrials.gov (www.clinicaltrials.gov), Sep. 28, 2009 5) ECRM survey (www.ecrmforum.org) cited in “Responding to the challenge of cancer in Europe”. Original survey data represent research funding in 2003. Funding estimates were inflated to 2009 US$ using the US Consumer Price Index. 6) Kort EJ, et al. The decline in U.S. cancer mortality in people born since 1925. Cancer Research 2009; 69(16): 6500-6505
  • 6. Breast Cancer Exemplifies Inequitable Allocation  In USA and EU effectively being controlled in up to 80% of some populations of women  However, breast cancer is leading cause of cancer death in most nonwhite women around the world (including US) 6  Why this disparity between white non-Hispanic women and non-white women in breast cancer deaths?  Reasons explored in a joint study of University of Massachusetts and Johns Hopkins in an international horizon scanning study in breast cancer, from 2006 to 20087 7) Buchanan D, Blauvelt B, et al. Breast cancer and ethnicity – A survey of thought leaders in Latin America, Asia and the Middle East. The Breast Conference, Sept. 2008.
  • 7. UMass/Johns Hopkins Horizon Scanning Study  Encompassed 30 countries across 3 regions of the world: Asia, Latin America and Middle East/Africa  Accounts for approximately 60% of world population  90% of collective population is non-White Key Finding: As in US, non-Caucasian ethnicities Key Finding: As in US, non-Caucasian ethnicities present with breast cancer at a significantly present with breast cancer at a significantly younger age and with more aggressive tumors younger age and with more aggressive tumors than their white counterparts than their white counterparts
  • 8. UMass/Johns Hopkins Horizon Scanning Study7  Part of this difference for ethnically diverse groups is attributed to differences in:  Lifestyle and cultural attitudes  Lack of prevention and early detection  Lack of education and advocacy  Issues related to access to care  Affordability  Environmental factors  Genetics  Most of the countries involved in the study noted they lacked the resources and know-how to conduct adequate research. 8,9 8) El Saghir NS, Khalil MK, et al. Trends in epidemiology and management of breast cancer in developing Arab countries: A literature and registry analysis. International Journal of Surgery, (2007) 5, 225-233. 9) Anderson BO et. al. “Guidelines for International Breast Health and Cancer Control-Implementation" Cancer, October 15, 2008 Supplement
  • 9. Cancer Guidelines and Policies Need to Adapt “The [NCCN] Guidelines, which these countries try to follow, simply do not “The [NCCN] Guidelines, which these countries try to follow, simply do not work for ethnically diverse and economically challenged populations.” work for ethnically diverse and economically challenged populations.” NCCN and other cancer guidelines mainly are based upon research done in white populations and may not be appropriate If treatment guidelines don’t work in ethnically diverse and economically challenged populations outside of the USA, they also are unlikely to work in similarly challenged populations within the USA A significant need and opportunity exists for greater diversity in cancer, epidemiology, socioeconomics and related research in order to formulate success strategies and policies to control cancer in America’s increasingly culturally and ethnically diverse populations
  • 10. Cancer in Different Ethnicities in USA: Hispanics Compared to non-Hispanic Caucasian populations: Both Hispanic men and women are twice as likely to have and die from liver cancer Hispanic women are 2.7 times more likely to have stomach cancer Hispanic women are twice as likely to have cervical cancer, and 1.5 times more likely to die from cervical cancer 10) Office of Minority Health, US Department of Health and Human Services, Cancer and Hispanic Americans, http://www.omhrc.gov/templates/content.aspx?lvl=2&lvlID=54&ID=3323
  • 11. Cancer in Different Ethnicities in US: Asians/Pacific Islanders Compared to non-Hispanic Caucasian populations:  Asian/Pacific Islander men are twice as likely to die from stomach cancer  Asian/Pacific Islander women are 2.6 times as likely to die from the same disease  Both Asian/Pacific Islander men and women have three times the incidence of liver & Intrahepatic Bile Duct cancer 11) Office of Minority Health, US Department of Health and Human Services, Cancer and Asian/Pacific Islanders, http://www.omhrc.gov/templates/content.aspx?lvl=2&lvlID=53&ID=3055
  • 12. Cancer in Different Ethnicities in US: African Americans African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers Compared to non-Hispanic Caucasian populations: African American men are twice as likely to have new cases of stomach cancer African American women are 10% less likely to have been diagnosed with breast cancer, however, they were 34% more likely to die from breast cancer 12) Office of Minority Health, US Department of Health and Human Services, Cancer and African Americans, http://www.omhrc.gov/templates/content.aspx?lvl=2&lvlID=51&ID=2826
  • 13. Differences in Breast Cancer by Race & Ethnicity  In US, mean age of breast cancer diagnosis: • American Indian - 54 ±13 • Hispanic - 56 ±14 • Asian/Pacific Islanders - 57±13 • Blacks - 57± 17 • Whites [Caucasians] - 62 ±14  Blacks, American Indians, and Hispanics: • had 1.7 to 2.5 fold increase risk of stage III and stage IV breast tumors • had 1.3 to 2 fold greater risk of breast cancer related mortality  In stage I or II breast cancer patients with tumors smaller than 5.0 cm, Blacks, other Asians and Pacific Islanders, Mexicans, and Puerto Ricans were 20% to 50% more likely to receive inappropriate primary surgical and radiation breast cancer treatment 13) Christopher Li, et al: Differences in Breast Cancer Stage, Treatment, and Survival by Race and Ethnicity, Arch Intern Med. 2003;163:49-56
  • 14. Ethnic Challenges in Cancer Research and Care  Some examples of mistrust, fear, social and other cultural beliefs: • Some fear genetic research in case they may be considered unmarriageable8 • If people knew they had “cancer genes” they will consider cancer “inevitable” and therefore not try to adopt healthier lifestyles 14 • Chinese may be reluctant to try to be part of any research for fear of learning they have and being rejected due to HBV/HCC 15 • In Africa, people are reluctant to participate in cancer research because they fear learning that they have HIV and other diseases. 16 • In some countries, women chose to have breast cancer or delay seeking treatment, for fear of losing their hair or surgical disfigurement 7 14) Lara, A (Deputy Minister of Health, Federal Government of Mexico), “The Delta Project”, July, 2005. 15) Cheng AL, et al. “Epidemiological Perspective: HBV Vaccinations and Implications in HCC Development.” International Liver Cancer Association, Sept. 2009. 16) Kerr D et al, London Declaration on cancer control in Africa (presentation and discussions during the Cancer Control in Africa Meeting, May 10 – 11, 2007, London, UK.
  • 15. Some Further Examples of Disparities  Studies on communications with patients • Oncologists appear to communicate differently with breast cancer patients, depending on the women's race, age, and other factors 17 • Poor communication of mammogram results may explain disparities in breast cancer diagnosis and outcomes18  Studies on screening and treatment • Poor, minority, and uninsured individuals have reduced access to screening and surgery for colorectal cancer19 • Perceived racial discrimination in adherence to screening mammography guideline 20 • Minority women are less likely to receive adjuvant therapies following breast cancer surgery21 • Disparities in receipt of chemotherapy following ovarian cancer surgery 22 • Socioeconomic barriers exist to timely diagnosis and treatment of prostate cancer in black men23 17) Siminoff, Graham, and Gordon, Patient Educ Counsel 62:355-360, 2006 (AHRQ grant HS08516). See also Carter, Zapka, O'Neill, et al., Palliat Support Care 4:257-271, 2006 (AHRQ grant HS10871). 18) Jones, Reams, Calvocoressi, et al., Am J Public Health 97(3):531-538, 2007 (AHRQ grant HS11603) and Dailey, Kasl, Holford, and Jones, Am J Epidemiol 165(11):1287-1295, 2007 (AHRQ grant HS15686). 19) Phillips, Liang, Ladabaum, et al., Medical Care 45(2):160-167, 2007 (AHRQ grants HS10771 and 10856); Diggs, Xu, Diaz, et al., Am J Manag Care 13(3):157-174, 2007 (AHRQ grant T32 HS00059); Zhang, Ayanian, and Zaslavsky, J Qual Health Care 19(1):11-20, 2007 (AHRQ grant HS09869). See also Guerra, Dominguez, and Shea, J Health Commun 10:651-663, 2005 (AHRQ grant HS10299). 20) Dailey, Kasl, Holford, and Jones, Am J Epidemiol 165:1287-1295, 2007 (AHRQ grant HS15686). See also Jones, Reams, Calvocoressi, et al., Am J Public Health 97(3):531-538, 2007 (AHRQ grant HS11603); Rauscher, Hawley, and Earp, Prev Med 40:822-830, 2005 (AHRQ grant T32 HS00007). 21) Bickell, LePar, Want, and Leventhal, J Clin Oncol 25(18):2516-2521, 2007. See also Bickell, Wang, Oluwole, et al., J Clin Oncol 24(9):1357-1362 (AHRQ grant HS10859). 22) Du et al, Studies finds disparities in receipt of chemotherapy following ovarian cancer surgery. Int J Gynecol Cancer 18(4):660-669, 2008 23) Talcott et al. Socioeconomic barriers exist to timely diagnosis and treatment of prostate cancer in black men. Cancer 109(8): 1599-1606, 2007
  • 16. Clinical Trials Lack Ethnically Diverse Representation  Clinical Trials • Fewer than 10% of U.S. clinical trial participants come from AfricanAmerican, Latino, and Asian populations 24 Source: Baseline Study of Patient Accrual Onto Publically Sponsored Trials, “Coalition of Cancer Groups of the Global Access Project, National Patient Advocate Foundation, April 2006. 24) Evelyn B, Toigo T, Banks D, et al. Participation of racial/ethnic groups in clinical trials and race related labeling: a review of new molecular entities approved 19951999. J Natl Med Assoc. 2001;93:18S-24S.
  • 17. Barriers to Clinical Trials Result in Underrepresentation of Non-Caucasians Participant Barriers to Participation: • Mistrust • Lack of awareness • Cultural barriers • Language/Linguistic differences • Socioeconomic obstacles • Cost/Lack of insurance • Study design eligibility criteria 25) The EDICT Project: Policy Recommendations to Eliminate Disparities in Clinical Trials: EDICT: Eliminating Disparities in Clinical Trails (10/2008, Version 2 )
  • 18. Barriers to Clinical Trials Result in Underrepresentation of non-Caucasians Physician/Investigator Barriers to Referring Participants to Clinical Trials: •Lack of non-Caucasian investigators •Lack of physician referral •Lack of physician awareness •Participants are also often excluded from clinical trials due to characteristics, preferences, and circumstances of the physicians who conduct or refer patients to clinical trials 25) The EDICT Project: Policy Recommendations to Eliminate Disparities in Clinical Trials: EDICT: Eliminating Disparities in Clinical Trails (10/2008, Version 2 )
  • 19. Opportunities to Increase Diverse Ethnicity Participation in Clinical Trials  Physician’s ethnicity is an important factor in influencing patient participation in a clinical trial • Black and Latino (and some Asian) physicians are more likely to treat patients of a similar race and ethnicity 26  Issue of underrepresentation of African Americans in research implies that more minority physicians should be recruited into clinical research [and into cancer specialties]. 26  Over 85% of communications on participation in clinical trials by both US government (NCI, NIH and others) and the major pharmaceutical companies found to be only available in English. 27 • Fewer than 10% were bi-lingual (and almost none multilingual) 26) Getz K, Peddicord D, Minorities underrepresented in clinical trials, Special to The Washington Post, October 2, 2008. 27) Innovara, Inc. How Difficult Is It to Enroll in Clinical Access Trials? Scheduled for publication in January, 2010.
  • 20. Influence of Health Insurance and Socioeconomic Status (SES)  As of 2009, 1:4 non-Caucasian in the USA will forego the cancer treatment due to costs (1:8 in overall population)  In a breast cancer study, women who were uninsured or had Medicaid coverage compared to those who had Medicare or private insurance were 65% less likely to receive adjuvant treatment28  Researchers compared black and white men diagnosed with prostate cancer from the North Carolina Cancer Registry23  Both had to travel similar distances for health care 23  Black men still had less access to care23  Also had poorer health insurance coverage and less continuity of care, used more public clinics and emergency wards, and expressed less trust in their physicians23  Conclusion: Barriers to early diagnosis and appropriate care for prostate cancer among black men were related more to SES than to lack of education or cultural misunderstanding23 28) Gelber et al. Study finds racial disparities in receipt of breast-conserving therapy among women with early-stage breast cancer. Ann Surg Oncol 13 (7): 977-984, 2006
  • 21. Influence of Health Insurance and Socioeconomic Status (SES)  In 2008, research in women with ovarian cancer showed those of higher SES had increased use of surgery and chemotherapy; women in the lowest quartile of SES were more likely to die than those in the highest quartile 22  In colorectal cancer, a 2007 study demonstrated that poor, minority and uninsured individuals have reduced access to screening and surgery for colorectal cancer, independent of other patient characteristics. 23  It is important to recognize that when policy for cancer control is formulated for diverse ethnicities, in many cases this may present additional challenges not only in terms of socioeconomic status, but also access to health care insurance  Percentage of uninsured Americans by race29:     White Americans - 11% Asians – 18% Blacks - 19% Hispanics - 31% 29) Income, Poverty, and Health Insurance Coverage in the United States: 2008, US Census Bureau, US Department of Commerce
  • 22. Cancer Control Must Start with Prevention  The President’s Cancer Panel already has identified tobacco and obesity reduction as important to cancer prevention, 30 as has the American Cancer Society.31  Obesity and physical inactivity may account for 25% to 30% of several major cancers, including cancer of the gall bladder, ovaries and pancreas. 32  Obese people may have a 19 % higher risk of pancreatic cancer than those with a normal BMI 33 • Obesity may also correlate to the higher pancreatic cancer risk among black Americans.34 30) President’s Cancer Panel, 2007. 31) Cancer Statistics 2009: A presentation from the American Cancer Society, American Cancer Society, 2009. 32) Vainio H, Bianchini F. IARC handbooks of cancer prevention. Volume 6: Weight control and physical activity. Lyon, France: IARC Press, 2002. 33) Berrington de Gonzalez A, Sweetland S, Spencer E. A meta-analysis of obesity and the risk of pancreatic cancer. British Journal of Cancer 2003; 89(3):519–523. 34) AOA Fact Sheets: Obesity in Minority Populations, American Obesity Association, May 2, 2005, http://obesity1.tempdomainname.com/subs/fastfacts/Obesity_Minority_Pop.shtml
  • 23. Obesity & Smoking Status • Minorities especially Blacks, American Indians and /or Mexicans appear less physically active 35 • In compare to other populations, Asians smoke the least 35 Race Inactive Regular Leisuretime Activity Race Smoking Status White 37.4 32.1 White 20.3 Black or African 51.0 23.0 Black or African 19.0 American Indian or Alaskan Native 39.8 22.6 American Indian or Alaskan Native 27.7 Mexican or Mexican American 51.9 22.7 Mexican or Mexican American 12.7 Asian 38.9 30.1 Asian 9.2 2 or more races 2 or more races Black or African American, white 42.0 29.9 Black or African American, white 15.4 35) Summary Health Statistics for U.S. Adults: National Health Interview Survey, 2007, US Department of Health and Human Services, Center for Disease Control and Prevention, National Center for Health Statistics
  • 24. Obesity in America In comparison to other populations, the Asian population was least overweight or obese 35 Race % Over-weight % Obese Race 35.1 25.9 White 35.1 25.4 Black or African 35.1 35.1 American Indian or Alaskan Native 34.7 32.4 Mexican or Mexican American 40.3 29.9 Asian 29.2 8.9 2 or more races 35.0 31.2 Black or African American, white 44.4 20.2 35) Summary Health Statistics for U.S. Adults: National Health Interview Survey, 2007, US Department of Health and Human Services, Center for Disease Control and Prevention, National Center for Health Statistics
  • 25. Obesity in America  African Americans were 1.4 times as likely to be obese as non-Hispanic Caucasians  Hispanic adults were 50% less likely to engage in active physical activity as nonHispanic Whites  African American women have the highest rates of being overweight or obese compared to other groups in the U.S. • About four out of five African American women are overweight or obese  73 percent of Mexican American women are overweight or obese compared to 61.6 % of the general female population  Minority women with low income appear to have the greatest likelihood of being overweight  Among Mexican American women, age 20 to 74, the rate of overweight is about 13 percent higher for women living below the poverty line versus above the poverty line 35) Summary Health Statistics for U.S. Adults: National Health Interview Survey, 2007, US Department of Health and Human Services, Center for Disease Control and Prevention, National Center for Health Statistics
  • 26. Obesity Increases the Risk of Cancer  Obesity and physical inactivity may account for 25 to 30% of several major cancers32  In 2002, about 41,000 new cases of cancer in the US were estimated due to obesity 36  In the US, 14% of death from cancer in men and 20% deaths in women may be due to overweight and obesity37 36) Polednak AP. Trends in incidence rates for obesity-associated cancers in the U.S. Cancer Detection and Prevention 2003; 27(6):415–421. 37) Calle EE, Rodriguez C, Walker-Thurmond K, Thun MJ. Overweight, obesity, and mortality from cancer in a prospectively studied cohort of U.S. adults. New England Journal of Medicine 2003; 348(17):1625–1638.
  • 27. Immigrants Face Increasing Risk of Cancer31 Cancer Rates for Hispanics in Florida were at least 40% higher than Hispanics in their countries of origin38 Among Cubans and Mexicans in Florida, the risk for colorectal cancer was more than double the risk in Cuba and Mexico. The same was true for lung cancer among Mexican and Puerto Rican women in Florida compared with women in their homelands38 "There is no reason to believe that the people who came to Florida from the Latin countries are different from those who stayed," said Dr. Paulo S. Pinheiro, a researcher in the university's department of epidemiology. "Since there is no genetic difference, if there is a difference it will be in the lifestyles they adopt once they come to the United States." 38 Cancer expert Vilma Cokkinides agrees that unhealthy lifestyle changes increase the cancer risk for Hispanic immigrants. "Immigrants who come and stay longer in the United States start adopting lifestyles that can lead to greater cancer incidents," said Cokkinides, strategic director of risk factor surveillance at the American Cancer Society. "Smoking, diet, lack of physical activity and exposure to certain chemicals tend to lead to a higher risk of cancer.“38 31) Cancer Statistics 2009: A presentation from the American Cancer Society, American Cancer Society, 2009. 38) Pinheiro PS et al. Cancer Incidence in first generation US Hispanics. C Epid Biom Prev 2009; 18(8). August 2009
  • 28. A Potential Model for Cancer Control The taxonomy modeled by JHU based upon analysis of data from UMass/Johns Hopkins study may help The taxonomy modeled by JHU based upon analysis of data from UMass/Johns Hopkins study may help to serve as aapotential model against which to assess additional strategies for better control cancer in to serve as potential model against which to assess additional strategies for better control cancer in the USA, embracing and to the benefit all diverse cultures and ethnicities.38 the USA, embracing and to the benefit all diverse cultures and ethnicities.38 Building Capacity Building Capacity Promoting Advocacy Promoting Advocacy Comprehensiv e Framework for National Cancer Control Strategies Developing Evidence Developing Evidence Removing Barriers Removing Barriers 39) Bridges J, Anderson, BO et al (2009) A Comprehensive Framework for National Breast Cancer Control Strategies: A Horizon Scanning Analysis, 28
  • 29. 1) Removing Barriers Barriers: Out-of-pocket costs Disparities in access High cost to payers Early detection Reimbursement Provide access to early detection and screening via public and Provide access to early detection and screening via public and private means. private means. ••France: All cancer screening is free to all citizens and France: All cancer screening is free to all citizens and public health care workers are measured on their public health care workers are measured on their achievement of assigned populations to be screened achievement of assigned populations to be screened ••Taiwan:Breast care and early detection taught in public Taiwan: Breast care and early detection taught in public school school Ensure that health insurance and providers ensure all patients Ensure that health insurance and providers ensure all patients have access to cancer diagnosis, therapy and care as have access to cancer diagnosis, therapy and care as established by national guidelines. established by national guidelines. ••Singapore: Highly rated and cost effective health care Singapore: Highly rated and cost effective health care system where health insurance is an elegantly simple system where health insurance is an elegantly simple and cost-effective system and cost-effective system 39) Bridges J, Anderson, BO et al (2009) A Comprehensive Framework for National Breast Cancer Control Strategies: A Horizon Scanning Analysis, submitted to The Breast Journal
  • 30. 2) Building Capacity Capacity Science and research Skilled nurses Research infrastructure National statistics Public education Australia Australia ••Emphasis is placed on ensuring adequate numbers of oncology nurses Emphasis is placed on ensuring adequate numbers of oncology nurses highly skilled in patient and family education, counseling and research. highly skilled in patient and family education, counseling and research. •• Organizations such as the renowned Australia New Zealand Breast Organizations such as the renowned Australia New Zealand Breast Cancer Trials Group ensure that every research protocol is scrutinized Cancer Trials Group ensure that every research protocol is scrutinized by highly skilled consumers, most of whom are cancer survivors by highly skilled consumers, most of whom are cancer survivors themselves. themselves. Japan Japan •• The government accepts shared responsibility for licensing of The government accepts shared responsibility for licensing of physicians and other health care professionals and approvals of physicians and other health care professionals and approvals of medicines, devices and diagnostics. medicines, devices and diagnostics. ••It therefore also limits liability, which further helps keeps liability (and It therefore also limits liability, which further helps keeps liability (and awards for malpractice or harmful results of medical care), health awards for malpractice or harmful results of medical care), health insurance and related legal costs well under control. insurance and related legal costs well under control. 39) Bridges J, Anderson, BO et al (2009) A Comprehensive Framework for National Breast Cancer Control Strategies: A Horizon Scanning Analysis, submitted to The Breast Journal
  • 31. 3) Developing Evidence Dimensions Study of local etiology Personalized therapy Developing guidelines International networks Local communication More funding of basic, ethnically related research alone or in More funding of basic, ethnically related research alone or in collaboration with other countries with similar ethnic collaboration with other countries with similar ethnic populations create knowledge synergies (and research done populations create knowledge synergies (and research done outside of US may also be significantly more cost-effective). outside of US may also be significantly more cost-effective). Examples such as the GSK Ethnic Research Initiative, or Susan G Examples such as the GSK Ethnic Research Initiative, or Susan G Komen’s and Gates’ Foundations and many other Komen’s and Gates’ Foundations and many other collaborations in research with industry, government and collaborations in research with industry, government and advocacy are to be commended. advocacy are to be commended. The US has outstanding pathology and other diagnostic/ The US has outstanding pathology and other diagnostic/ laboratory capabilities and biomarker technologies and the laboratory capabilities and biomarker technologies and the ability to develop and maintain quality tissue banks for shared ability to develop and maintain quality tissue banks for shared research, which may serve not only its own diverse research, which may serve not only its own diverse populations, but the world. In turn, this will help to create new populations, but the world. In turn, this will help to create new jobs, mainly in the US. jobs, mainly in the US. 39) Bridges J, Anderson, BO et al (2009) A Comprehensive Framework for National Breast Cancer Control Strategies: A Horizon Scanning Analysis, submitted to The Breast Journal
  • 32. 4) Promoting Advocacy Advocacy Patient empowerment Managing survivorship Quality of life Metastic disease Organized advocacy Encourage and support ethnically and culturally diverse cancer Encourage and support ethnically and culturally diverse cancer advocacy initiatives and collaborations. Advocacy also means that the advocacy initiatives and collaborations. Advocacy also means that the patients are empowered to ensure quality care balanced/quality of life. patients are empowered to ensure quality care balanced/quality of life. Taiwan: National coalitions form that allow local, special interest and Taiwan: National coalitions form that allow local, special interest and other smaller, diverse advocacy groups obtain aabigger voice at the other smaller, diverse advocacy groups obtain bigger voice at the national level. national level. Quebec: Cancer specialists organized themselves and taught primary Quebec: Cancer specialists organized themselves and taught primary care physicians resulting in as good as, ififnot better, ongoing cancer care physicians resulting in as good as, not better, ongoing cancer care. care. In the US, the Fred Hutchinson Cancer Institute has translated In the US, the Fred Hutchinson Cancer Institute has translated guidelines for the Breast Health Global Initiative in many different guidelines for the Breast Health Global Initiative in many different languages of the world. languages of the world. Cancer advocacy groups should evaluate how they may better serve Cancer advocacy groups should evaluate how they may better serve culturally and ethnically diverse patient groups. culturally and ethnically diverse patient groups. 39) Bridges J, Anderson, BO et al (2009) A Comprehensive Framework for National Breast Cancer Control Strategies: A Horizon Scanning Analysis, submitted to The Breast Journal
  • 33. THE GOOD NEWS… • Need for new policies and practices to be developed to better control cancer in America’s increasingly culturally and ethnically diverse nation • America does not have to learn on its own • It has much to learn from the rest of the world as the world may learn from it • As a result, when the US succeeds in achieving better control of cancer across its rich and diverse population; everyone - not only in the US, but in the world - will benefit.
  • 34. www.innovara.com