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Improving Outcomes in Cancer and Quality Healthcare
Although we’ve seen decades of social change and awareness, as well as governmental policies that promote and uphold civil rights, when it comes to healthcare in the United States, statistics suggest we are still faced with racial inequality on a widespread basis.
It’s a fairly well known fact that more African-Americans are diagnosed and succumb to cancer than any other ethnic or minority group in our country. Additionally, they are at increased risk for devastating chronic diseases like stroke, heart disease, diabetes, and hypertension. What is causing these unfavorably skewed rates in the black community? As we have learned with cancer, and disease in general, there is never just one place where the accusing finger can be pointed, but it is important to at least focus our attention on this issue with the hope of making a positive change for African-American patients in the future!
It is too simplistic to think that we will easily uncover why African-Americans have such a high rate of cancer, but thankfully, there is much current research in place designed to help begin putting the pieces of this puzzle together. Scientists are searching for biological data to help provide answers.
Community leaders and health care workers often feel that poor access to medical care may be a major culprit. When you have a group of people who miss or delay getting exams that can find cancer early – like mammograms, Pap smears, blood work, and colon tests – you will also have a group that is missing out on a chance that cancerous or precancerous growths can be discovered and removed at an early stage of development. When this opportunity is missed, the odds for survival are often reduced.
Rowan Chlebowski, MD, PhD, of UCLA’s Jonsson Comprehensive Cancer Center, led a recent study that found breast cancer differences between white and black women persisted even after you account for the numerous risk factors that might influence the development of the disease, such as age, body weight, family history, and whether or not the woman got mammograms. Dr. Chlebowski and his team looked at the records of more than 156,000 postmenopausal women who were participating in the Women’s Health Initiative.
They were able to compare the breast cancer occurrence rates and deaths among American women from a variety of ethnic groups, which included white, African-American, Hispanic, American Indian/Alaska Native, and Asian/Pacific Islander. Additionally, they looked at the differences in risk factors among these ethnic groups.
What they found was that women in all of the minority groups were less likely than white women to develop breast cancer. In every group except the African-Americans, these differences could be rationalized by differences in breast cancer risk factors. As an example, minority women were less likely to drink alcohol than white women. They were also less likely to use hormone replacement therapy. Both of these factors are known to raise a woman’s risk of breast cancer.
Dr. Chlebowski and his fellow researchers looked at tumor characteristics and found that black women were more likely than women of any race studied to have high-grade (aggressive) tumors, and tumors without estrogen receptors (ER- negative). These characteristics make a tumor more difficult to treat. The variance between African-American and white women in this particular area were especially pronounced.
Other studies have also given plausibility to genetic differences playing a role in these racial differences. In a co-written paper entitled Breast cancer in sub-Saharan Africa: How does it relate to breast cancer in African-American women?, authors Alero Fregene, M.D., Lisa A. Newman, M.D., M.P.H. discovered that women from sub-Saharan Africa were found to have a low incidence of breast cancer. This was partly explained by a largely protective reproductive history, including late menarche, early menopause, high parity with prolonged breastfeeding, irregular menses, and fewer ovulatory cycles. The average age at diagnosis, however, was approximately 10 years younger than breast cancer patients of western nations, and disease stage distribution was shifted toward more advanced disease, which resulted in higher mortality rates.
These features were found to be similar to data on breast cancer in African-American women. Mutations in BRCA1 and BRCA2 have been reported in African-American women, but the extent of the contribution of BRCA1 and BRCA2 to breast cancer burden in Africa was uncertain. Limited financial resources lead to suboptimal cancer data collection, as well as delayed diagnosis and treatment of many African breast cancer patients.
This discovery led them to conclude that parallels between breast cancer burdens of African-American and sub-Saharan-African women were provocative, indicating the need for further exploration of possible genetically transmitted features related to estrogen metabolism and/or breast cancer risk.
Could these genetic factors increase the risk of breast cancer, or make African-American women more likely to develop high-grade, hormone-receptor negative tumors? Obviously, further study is necessary to more clearly identify the role of genetics in the development and progression of breast cancer in this population.
African-Americans also tend to have different mutations in the BRCA1 and BRCA2 genes than individuals of other races. These genes make women more susceptible to breast and ovarian cancers. Genetic testing, which is available to women with a family history or either disease, can determine whether a woman carries this mutation. Unfortunately, African-American women are much less likely to get tested for BRCA mutations than white women. Is their hesitancy in some way based on a distrust of the health care system? Do black women fear discrimination based on the test results? Do some of their health care providers have different attitudes about the value of testing because of their race? These are all questions that not only factor in – but that need to be addressed!
In an article written for Breast Cancer Action’s December 2005/January 2006 newsletter, (Struggling to Survive: African American Women and Breast Cancer), author Jane Sprague Zones highlights how socioeconomics may factor into this scenario. As she points out, “The effects of socioeconomic status (SES) – income, education, occupation – are heavily entwined with race, and most research does not distinguish between the two. As with African heritage, low SES is associated with poor health status. This is in no small measure affected by lack of insurance and poor access to quality health care.”
When discussing treatment disparities, Sprague Zones highlights an observation by Dr. Otis Brawley, a professor of medicine at Emory University. When he was visiting a Centers for Disease Control and Prevention mammography screening site at a “major hospital in middle America”, he found that it took four months for mammograms to be read. Health-insured women expect this process to take no more than a few days. At this same site, he also found that women sometimes had to wait all day in the clinic to receive a biopsy. Is it surprising to learn than 40% of these individuals did not return to learn the results?
This again brings up the issue of a lack of trust in our healthcare system. If a healthcare system wishes to be responsive to the needs of all the communities it serves, they have an obligation to address even erroneous perceptions held by the African-American contingent. Just how much does this distrust affect the delivery of quality healthcare to African-Americans? Many people of color refer to the Tuskegee Study when asked why they are reluctant to seek medical attention, or participate in clinical trials. To understand this stance, you need to be familiar with where it originates.
In the 40-year Tuskegee Study (1932-1971), there were 399 black men with syphilis and 201 control patients. As part of this study conducted in Macon County, Alabama, poor sharecroppers were told they were being treated for “bad blood. ”In fact, the physicians in charge of the study ensured that these men went untreated. In the 25 years since its details first were revealed, the Tuskegee Syphilis study has become a powerful symbol of racism in medicine, ethical misconduct in human research, and government abuse of the vulnerable.
Sensitive public health officials have made attempts since the horror of the Tuskegee Study were exposed, to design programs that address the distrust in poor African-American communities. Some of these attempts have not only backfired, but have furthered the problem. Strategies like hiring grassroots people from the community to solicit participation in clinical trials or studies have been met with considerable skepticism, because the Tuskegee Study used these same sorts of culturally sensitive techniques on a grassroots level to gain the involvement and participation of the subjects.
Once you have violated a people’s civil rights, even the most secure African-American is going to pause to give thought to what our government might do in the name of maximizing the common good! What the Tuskegee Study did was plant the belief in many African-American minds that the state may think it is permissible to adopt questionable means with people of color, if the ends are honorable enough.
Cultural and folk beliefs come into play in many cancer related areas. Chest surgeons at the Veterans Affairs Medical Center in that city observed that patients undergoing evaluation for surgery for lung cancer had an unusual, but serious belief; they thought that lung cancer spreads if exposed to air (as during surgery). Obviously, patients holding this conviction would be far less willing to have surgery for their cancer.
In order to gain a greater understanding of this problem, a self-completed questionnaire was given to 626 consecutive patients at 5 pulmonary and lung cancer clinics in Philadelphia. Patients completed the questionnaire while they were waiting to see the doctor. The questionnaire itself had been tested in a pilot study to ensure that it was specific enough, and unbiased.
In analyzing the returned questionnaires, the frequency of the belief in question was compared between white people and African-Americans. Other factors that might influence the result, such as age, gender, educational level, household income and religious affiliation were recorded.
The patients were mostly middle-aged or elderly men (average age 60), white, and lived in the city. Almost half (45%) had heard of the belief that lung surgery could lead to the spread of cancer by air; and more than one in three (37%) believed this to be true. One in ten thought that this was a reason to void lung surgery.
For each question, there were significant differences in frequencies of response between white people and African-Americans. Thus 29% of white people versus 61% of African-Americans thought the belief to be true. And 5% of white people versus 19% of African-Americans would avoid surgery because of this belief.
Although the amount of education and household income were shown to be important in determining the frequency of this belief, racial differences remained after appropriate adjustments were made for these factors.
The belief that exposure of lung cancer to air at the time of surgery promotes cancer spread is obviously quite common in this community. And this belief is about twice as common in African-Americans than in white people.
There are other reports of such racial differences in beliefs about health matters; these concern the risks of high blood pressure, mental health, syphilis, AIDs, skin cancer, prostate cancer, and breast cancer.
Are some of these myths rooted in Afro-centric cultural, religious, and folk beliefs? Is the fact that lung cancer is more common and has a lower 5-year survival rate in black than in white people, largely because of inferior treatment opportunities?
When similar treatment for lung cancer is provided to black and white people, the outcome (survival rate) is similar, both for those having surgery and those receiving radiation. The message is clear: efforts must be made by treating physicians to dispel any such beliefs, so that people of all races seek healthcare as soon as symptoms occur, and that those who might be avoiding surgery for fear of cancer spread can be freed of this idea. It is felt that African-American physicians would be more powerful message carriers in areas where this belief is prominent.
So it appears that the following may all play greater or lesser roles in the African-American cancer experience:
In their paper, Development of a Spiritually Based Breast Cancer Educational Booklet for African-American Women, authors Cheryl L. Holt, PhD, Annika Kyles, BS, Theresa Wiehagen, BA, and Chris Casey, BFA tackled the cultural and/or religious beliefs issue. As they point out, “Breast cancer is a significant health problem among African-American women. Since the church is a viable health education venue for this population, spiritual cancer communication is a timely area of study to promote cancer education. In partnership with an African-American church, we developed an educational booklet on breast cancer early detection from within a spiritual framework. Working with an advisory panel of women from the church, we facilitated the development of the booklet content and design. Panel members selected the spiritual themes and scripture used to frame the early detection messages, and they wrote messages to be included in the booklet. Meetings with focus groups were conducted to generate feedback on the booklet design and content. We believe that this spiritually based approach may be one way to make cancer communication more culturally appropriate for African-American women.”
Closing the Health Gap is an educational campaign designed to help make good health an important issue among racial and ethnic minority populations, who are affected by serious diseases and health conditions at far greater rates than other Americans. In 2002, the Department of Health and Human Services (HHS) and its founding partner, the ABC Radio Networks, launched the campaign Take a Loved One to the Doctor with a series of health messages for African American communities. In 2003, the campaign expanded its focus to bring the best health information to more communities, including Hispanic Americans, Asian Americans and Pacific Islanders, American Indians, and Alaska Natives.
In 2005 they changed their campaign’s name to Take a Loved One for a Checkup Day to emphasize the importance of preventive screenings and to acknowledge the full spectrum of health professionals involved in keeping communities healthy (doctors, nurses, dentists, physician’s assistants, and other health providers).
On their website, the HHS tells underserved individuals: If you don’t already have a doctor, or don’t have health insurance, contact your local community health center (http://ask.hrsa.gov/pc) or local health department to ask about free or low-cost care. If you have insurance and don’t use it, there is no better time than now. They also suggest that if you need assistance finding a health provider, you can contact: 1-800-444-6472 and ask to speak to one of our information specialists.
Another program that has been developed by the National Cancer Institute in conjunction with black churches was designed to help African-Americans take charge of their health. Body & Soul: A Celebration of Healthy Eating & Living promotes the national recommendation for Americans to eat 5 to 9 servings of fruits and vegetables a day for better health. Research done by the NCI indicates that the average African-American eats only about 3 servings a day.
Since it is believed that a diet rich in fruits and vegetables promotes good health and can help lower the risk of some cancers and other illnesses, this program is designed to begin spreading its message in a setting where individuals are more apt to pay attention to its importance.
Body & Soul works by combining pastoral leadership, church-wide activities, a church environment that supports healthy eating, and peer counseling. The NCI’s Deputy Director for Cancer Care and Delivery Systems, Mark Clanton, M.D. states, “Churches have always played an important role in improving the status of African-Americans in this country, and that has certainly included health. I think that working through the church is a powerful grassroots approach that will get the African-American community’s attention on this important issue.”
In an interview that appears on the American Cancer Society’s website, M.D. Anderson’s Dr. Lovell A. Jones provides several important insights into the African-American cancer issue. When addressing the distrust some people of color harbor regarding healthcare and clinical trials, Dr. Jones states, “I think there is still an underlying fear and lack of trust of the system because of the idea that even when you’re in the system you get stereotyped or profiled. For instance, minority health issues are not the same as indigent (poverty) health issues. If you treat a minority patient as though he/she were indigent (poor), it can have an impact on how you treat the patient, and the recommendations you make. The patient may sense this and feel that you are not providing the same care as you provide another, non-indigent patient. If you are working within the clinical trial, the patient may begin to question their participation in the clinical trial. This message is taken back to the family members and the community.”
“I also think all physicians who are involved in clinical trials should realize there is a need to change how they approach minorities. They need to bring in some minorities on their staff who are in leadership roles – not just one token representative,” continues Dr. Jones.
Another cultural issue that comes into play involves the idea of survivorship. As Dr. Jones points out, “The vast majority of African-Americans don’t know someone who has survived cancer. But there may be a survivor sitting right next to them.” It would appear that a key element to greater understanding, trust, and ultimately, survival, may hinge upon the ability of African-Americans to share their survival stories and experiences in order to begin assuring others that not everyone afflicted with cancer is given a death sentence.
And finally, as Dr. Jones so eloquently shares with us, “You have to couple screening with treatment. You can’t screen someone, tell them they have a disease, and then say, ‘you’re on your own’. They may delay seeking care because they don’t know how to enter the system and/or they may not think that they have the disease because they don’t feel anything. At some point in time a system is going to have to be set up. In other studies that I have done, I have been able to find a way to provide services for the individuals who need those services.”