Portal de Periódicos da CAPES

Panel 1: framing issues in rural women’s health issues speaker 1

2001; Elsevier BV; Volume: 11; Issue: 1 Linguagem: Inglês

10.1016/s1049-3867(00)00079-7

1878-4321

Joanna M. Cain,

Healthcare Policy and Management

I’m going to talk about something I’ve struggled with during 20 years of practice: the plight of the rural women I treat as a gynecologic oncologist, and the barriers to their getting adequate health care. Their problems are egregious. A young Hispanic woman whom I saw had advanced cervical cancer and refused treatment because her husband would reject her if she weren’t able to have children. A 70-year-old woman in Pennsylvania came in with bleeding every month because she didn’t know that periods could not resume after menopause. The poverty in the place where I grew up, a rural area, is unchanged. The plight of rural women is significant and now is the time for all of us to change that. The assumptions I’d like us to begin with are these: First, that every woman wants access to quality health care and the best care possible. Second, that all women are going to filter health care information through cultural and emotional sieves. I also want to give you a picture of women in rural America. I want to talk first about the young. In rural America, we have disproportionate numbers of people who fall into the under-18 and aged categories. We are losing over time that middle-aged group that used to provide a better safety net for rural elderly women. Those under 18 in our rural communities don’t fit a lot of the stereotypes that legislators have about them. They are becoming pregnant—our legislators often think that they’re immune from that risk in rural areas. There’s more drug use in rural youth. Our legislators are surprised to find that’s the case. In general, they still have late or limited prenatal care, particularly rural African American, Latino migrant workers, and Native Americans. They have more out-of-hospital deliveries and consequently more long-term pelvic floor anatomic problems. I remember working with an Amish community in Iowa as a young medical student and seeing untreated birth injuries that I’d never seen in this country, and that were accepted as the norm. Young rural women have a higher fetal death rate, although that has improved. Obstetric issues will be discussed in more detail later in this conference, but I’d like to mention one issue now. Say you’re a lone practitioner in a hospital and the anesthesiologist has to be called in. Insurers, governmental, and nongovernmental agencies state that our national standard is to have a certain percentage of vaginal births after cesarean sections, and then they say that there must be an anesthesiologist present during these deliveries. They also say to practitioners that their malpractice insurance will increase and that they are to be held accountable if something goes wrong. How likely is it that the single practitioner is going to be able to meet that national standard? Not likely, when neither the anesthesiologist nor the obstetric physician is available to rural patients. When we set national standards and try to apply them to rural communities without adequate providers, it doesn’t work. Elderly women are disproportionately part of the rural economic scene. They are poor. They enter extended care facilities at an earlier age with fewer disabilities than urban women do because they have no other recourse. In general, rural women are more likely to be married. They have more children. They live in larger families. They complete their families earlier. They’re likely to have extended families, which can be both good and bad. The norms of those extended families can be quite off center and because of their isolation, family members may not know it. We’ve had young women come in and not know that it isn’t normal to have sexual relations with their father and their uncle. Gender roles are strongly reinforced in rural areas, and rural women have lower salaries than do rural men. We know women in general have lower salaries than men, but the disparity is greater in rural areas. In general, there are few child care alternatives for these women. As I think about barriers to health care, I think about geographic, economic, educational, and cultural barriers, as well as the transient nature of the lives these women lead. When I think about geography, I think about the distance to everything: the distance to a friend for help, the distance for getting a response to trauma. Mean time to the scene in rural communities is 21 minutes versus 18 in urban areas. Response time alone is 14 minutes versus seven. Every extra minute diminishes the chances of survival. Geography impacts health tremendously. Women have more car accidents in rural areas. They drive farther to work, so have more opportunities to have car accidents. They also have more farm-related accidents, and those accidents are more severe and have more permanent disabling sequelae than for men. That’s true also of children in rural areas. There is another way that geography matters, and it’s illustrated by this story that appeared recently in the New York Times. Even the price of gas impacts health. Brooklyn, Iowa. Every weekday, Darrel helps his wife into their 1989 Chevrolet Caprice, loads her wheelchair and cane into the trunk, and drives 22 miles to a hospital in Grinnell. Since having a stroke in May, Donna, who is 54, has spent a few hours there each day learning to walk and talk again. Once middle class, the couple was already sliding down the economic ladder living on Darrel’s $1,300 a month disability after he was hurt a few years back. So when gasoline prices spiked to $1.80 this summer, the 220 miles a week commute to the hospital took food out of their mouths. Geographic isolation impacts domestic violence. When there’s one car and the woman never has access to it, who will know what’s happening to her? Isolation also enables families to hide unusual health practices. I’ve mentioned incest, but there are other issues, such as refusing to let someone receive prenatal care or not allowing children to be immunized. Isolation means you’re not held accountable for your beliefs and the consequences to the people involved. Think about geography in terms of political isolation. There are very few voters per square mile in these rural areas. If you’re a congresswoman or a congressman, getting out there and talking to these people is going to be hard. A quarter of our population lives in these rural areas, and their needs are overlooked because they’re only part of the votership and they’re hard to get to. Think about geography in terms of health care providers. They’re isolated as well. It’s harder for them to get to information, to get someone to help, to call, to find somebody who will back them up. Geography is perhaps our greatest barrier for rural women’s health. Oftentimes we can screen women in rural areas, but the kind of care needed for breast, cervical, or ovarian cancer is miles and miles away. Or the women may have no insurance that will cover this care. What we know about rural individuals is that if they don’t have the money, they’re not likely to go in for care. Another problem is how we pay for Medicare. Providers in rural areas get reimbursed less per beneficiary. Health plans in Pennsylvania are dropping seniors in rural areas from their HMOs, and this is a phenomenon across the country. We have an inaccurate belief that drugs, care, and technology cost less in rural areas. These lower Medicare payments mean that the rural elderly cannot get health insurance because insurance companies cannot afford to accept their Medicare reimbursements. Migrant workers have additional problems. Women move with the crops, which means they’re always new in the area. Not only do they not have any sort of time off for health care, but they have to learn new geographic areas each time they move. They have to figure out how to get to the community health center. Even if they were there last year, the health care provider who’s there this year is most likely somebody new. I’ve dealt with many of these patients, and it means a lot to them when I take time to try and reestablish trust over and over again. This takes a significant amount of time but there is no reimbursement, even though it may significantly improve their health. One bad experience can taint their whole perception of health care. Language barriers are more prominent in rural areas. We often say, “They speak Spanish so we’ll give them materials in Spanish.” Oftentimes, though, the women are unable to read in their primary language. We have a lot of work to do on language and education so women can have access to the kinds of information they need. Language barriers can exist even when people’s primary language is English. People with little or no education may lack the vocabulary to discuss anatomy or normal body functions. A word that means one thing to me may mean something completely different to them. Culture can create barriers. In rural areas, we deal with a lot of closed societies that are isolated from others around them. They are closed for many different reasons, such as religious beliefs, ethnic practices, or language. Rural areas are also conservative, and new thoughts and health ideas are slow to diffuse. Another important issue in rural areas is confidentiality. When women are dealing with sensitive issues—sexually transmitted diseases, HIV, mental health and the stigma of mental illness, or domestic violence—they need the ability to leave the community to get care elsewhere. They would prefer that the person providing care isn’t the same person they sit next to at a church meeting or someone who will look at them as though they’re different every time they walk into their local grain store. Getting away from domestic violence poses special problems for rural women, as it often means leaving their community with no job skills and a poor education. Rural people may have a belief that you shouldn’t leave. There’s a certain stoicism that comes out of poverty and rural culture. There’s also a strong sense among rural women that they don’t deserve care. There is a strong belief in independence and that they should be able to care for themselves. Rural peoples’ entry into tertiary care centers or even primary care centers is often delayed. These are very strong cultural barriers that we have to address to improve the health of our rural women. We asked focus groups of rural women in Pennsylvania what they were concerned about. They’re concerned about environmental toxins. They’re concerned about heart disease, Alzheimers disease, asthma, hormone replacement therapy, and adult onset and juvenile diabetes. They’re concerned about Lyme disease. They are really concerned about their lack of health care services. Ob/Gyn care is high on their list of concerns; specialists are few and far between in rural areas, and women have to travel a long way to see them. Someone needs to speak for rural women and that means all of us. What I hope we can do during this conference is begin to put together a consensus. I would like us to set an agenda for education and access to care, so all of us can target, with one voice, the barriers that I have outlined for you. We can do it, all of us together, but only if we start speaking from the same agenda and making these voiceless women and their needs apparent to governmental and nongovernmental resources. As has been mentioned, there’s a gender gap that’s particularly noticeable for minorities in terms of the disease rates, and these are the disease differentials for diabetes for non-Hispanic blacks and for Mexican Americans. Diabetes is a substantial killer, on a par with breast cancer, and the number of new cases per year is staggering. The high cervical cancer rate in Asian women is another dramatic example of ethnic differences. As populations around the world migrate more frequently, we’re confronted with more and more disparities in the American population. The National Cancer Institute (NCI) is offering a funding opportunity to those interested in geographic-based research in cancer control and epidemiology. They’ve issued a special program announcement to use the recently published “Atlas of Cancer Mortality,” which is described on the NCI home page. I think this might be of interest to a number of you who are at universities and working on rural populations, because the database is organized by county and it has over 25 years worth of cancer mortality data stratified by race, ethnicity, age group, and cancer site. Another area of significant concern to rural women is groundwater contamination. Twenty-three million people, mostly in the rural areas, drink groundwater from a private well. Sometimes the wells are tested for bacterial contamination or even for nitrate contamination, but oftentimes they are not tested for the more exotic compounds. One of these is methyl tert-butyl ether, referred to as MTBE, which is the gasoline additive that replaced lead. It was less than a decade before it began showing up in groundwater. Because of its chemical properties, once it leaks into the ground from an underground storage tank it can travel laterally through the strata of the rocks for some distance. The taste and odor thresholds are relatively high, so it could be present in a lower concentration and undetectable. Many solvents, metals, and pesticides have a similar migratory property, so if people rely solely on private wells, they should have them tested regularly. As you know, there have been about a dozen studies on breast cancer and DDT and DDE derivatives with inconsistent results. Researchers were about to shelve the problem when investigators in Denmark published two studies on other pesticides. They did not find a positive association between DDT or DDE and breast cancer, but they did find one between dieldrin and breast cancer, and they also showed that higher dieldrin levels correlate with poorer survival among the women affected. In the literature, there have been some associations between pesticide exposure and Parkinson’s disease. There’s a large study that is a subset of the Agricultural Health Study that will look at this association. I’d like to end with several thoughts. First, although I’ve been talking about science, a left-brain activity, I’d like to leave you with the right brain side of the story. When we try to improve the health of rural women, we need to think comprehensively, in great detail, and in an integrated way. We also need to be mindful, as Rachel Carson was, of continuity, the continuation of life. Otherwise, we might interfere with it. We have to have compassion for the people who are sick and come to us in the public forum. To contribute to reducing suffering, we need three things: material resources—that’s where the government’s research priority agenda comes in; know-how—that’s all the knowledge that you and others bring to it; and non-fear. That is, we have to have the courage to do the work.