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Bringing Cancer Awareness and Advocacy to Poor Indigenous Women in Ecuador

Listen, as Marie Dahlstrom talks about the challenges about advocating for health disparities among communities of color

Marie Dahlstrom, a well-known advocate for Latina women’s health issues, is one of the co-directors of the “Cuidate Te Apoyamos” project, a community- based breast health program for indigenous and poor mestiza women in Ecuador. The University of Portland and Pontificia Universidad Católica del Ecuador received funding from Susan G. Komen for the Cure to implement the project.

Breast cancer mortality rates in Latin America are disproportionately higher than those in developed countries. In Ecuador, breast cancer is often detected at later stages and results in more deaths.

Of Ecuadorian descent, Marie serves as the director of Research and Development for Familias en Acciòn a Latino community-based health organization whose mission is to promote holistic family well-being for Latinos through community engagement, education, research and advocacy for social change.

She is a clinical assistant professor with Oregon Health and Science University (OHSU) Department of Radiation Medicine and is a health consultant specializing in community research, program development and training focused on Latino health disparities both nationally and in Latin America.

Marie discusses the breast health project in Ecuador in a Q&A with Colors of Influence.

What are the highlights of the project in Ecuador, and why is it important? As in other developing countries, in Ecuador, it is a huge challenge for women to have access to mammograms. What we see in Latin America is that when health awareness takes place, it starts in the middle-class or upper middle-class levels. There aren’t very many resources for disenfranchised communities, for poor women, and indigenous women in particular.

We’re targeting two areas: One is a much marginalized urban area within the capital, and the other is a rural region. Latin America, like continents such as North America, has experienced a large influx of migration into urban areas. Quito, among large cities in Latin America, hasn’t been prepared for this large influx. Many of the homes have no services, and there is incredible degree of poverty.

The other area is rural: an indigenous area where new home developments have taken a lot of land. The changes are forcing indigenous communities to be isolated, and surrounded by upper middle-class homes. This is a community that few care about.

We are starting focus groups that will be facilitated by the “promotoras” or community health workers. They will be asking women questions like: “What do you know about breast cancer? What do you know about mammography?” What would evolve from that would be a culturally-specific breast health program.

As funders in the United States, we have to be sensitive that we are doing the community an injustice if we go in for one year, set up a program, and leave. What are they left with, long-term? Every single step of this program is looking at sustainability: how will this educational program be maintained? We’re looking at integrating our program into education provided by promotoras within the communities.

We are working with our colleagues at Pontificia Universidad Catolica de Ecuador on a truly multi-national partnership. In exploring what we can do about chronic disease prevention and intervention, there is a huge opportunity for faculty and students from both universities to be able to work with communities in Ecuador.

What do you want to accomplish with the project in Ecuador? This project cares about the people that are often the least cared about. When you have a system that’s limited in fiscal resources, often, it’s people with higher levels of income who receive attention. It is my hope to also assist other countries with indigenous populations to be able to outreach and partner with them to develop similar programs.

We want to be able to aid the development of a strong cancer-control system in Ecuador in any small way that we can. It isn’t enough simply to increase awareness. From my perspective, it is unethical to increase awareness without having the proper resources to be able to respond to the needs.

In partnership with the university and the Ministry of Health, we also want the community to develop capacity to create and maintain programs that will specifically target poor and indigenous women. President Rafael Correa has doubled the budget for Ministry of Public Health and shows a strong commitment to health care access.

How is work in this project different from the work you’ve done in advocating for Latinos in the United States? Working in a developing country, there are so many more barriers. In this project, it is not my country. I’m a Latina of Ecuadorian background, but I was born in the U.S. What I’m good at is finding resources to support their process. They’re the ones who have to decide what’s practical, and what’s doable, and my involvement has to be done in a non-intrusive way.

Here in the U.S., I feel that my role at times requires me to be more assertive and intrusive. I am essentially pushing a broken health system that primarily allows easy access for people who have the means. Even if people of color have the means, research says we are not receiving the highest quality of care.

What are some of the highlights of your work advocating for women’s health among Latino women in Oregon? Years ago, two colleagues and I collaborated on implementing the program Mujer Sana (Healthy Woman) that received funding from the State of Oregon. The goal was to develop recommendations for outreach in prevention and screening for breast and cervical cancer. We interviewed women all over the state. The majority had not been screened, and most of the women were uninsured. We heard the women talk about what they didn’t know about breast cancer, their fears and misunderstandings.

Most of what was difficult for me was the lack of responsiveness from the health system’s perspectives to these women’s needs. When I was working for SMG Foundation, I became very involved in advocacy and program development, to increase programs and resources for breast cancer prevention. Even though Latinas have lower incidences of breast cancer than non-Hispanic white women, the mortality rates are higher, because all too often the disease is detected at a later stage. These are preventable deaths in many instances.

What was frustrating for me was to hear the responsibility being placed on individuals for getting screened and preventing their cancer. I agree that there is a certain amount of individual responsibility, but we neglect to assume collective responsibility for a health system that makes it so difficult for people to get the kind of screening that they should have.

We’re an amazing country in the United States. Our health system is the most expensive in the world, and we have the most amazing technology. And yet, we have incredible health disparities. What we assume is that if somebody doesn’t receive the care they need, we hold them accountable. The reality is that we have a broken health system that is not prevention-oriented, but rather is disease-specific.

I’m extremely blessed to know the experiences of cancer survivors and their families. I’ve been very blessed to work with organizations like Susan G. Komen for the Cure and the National Cancer Institute to be able to understand what is available. So often in communities of color, we’re so busy paying attention to the urgent needs of our communities that often, we’re overlooked for leadership positions that would give us access to information about funding and policy-making. The opportunity to participate has been so wonderful, because I’ve been able to bring back what I have learned to Latinos and other underserved communities. Knowledge is so important, but a lot of times, we don’t have that kind of access.

Among communities of color, we need to build more leadership. I’m very impressed at young men and women stepping forward and wanting to be leaders. The community knows how to do the work. I am best at finding out where resources are, applying for funding, and empowering the community to take it forward and utilize available resources.

What are some of the challenges you encountered in doing the work? Certainly, it’s not one that’s unique to me. It becomes very lonely sometimes, when you’re the only person of color participating in an organization. So much of the time, you have a different perspective than the rest of the group. It becomes somewhat tiring to be the one saying, “Yes, but what about the voices that aren’t at this table?”

There’s an incredible amount of amazing cancer research in this country, but there’s also a lack of research specific to Latinos and other communities of color. I find it appalling because we’re taxpayers, and we have the right to be represented as other populations in cancer research. So much of the time, I hear from researchers that they couldn’t find the Latinos or African-Americans, native or Asian people. That’s no longer acceptable. People may find me as sort of a broken record. Show me the data on underserved populations, are they included in your research. If not, why not? What are the next steps to ensure that they are?

We have a long ways to go still before we see equitable cancer research where all populations are represented. Federal funding has been so low in recent years, that there is less diversity in researchers. Only the most seasoned researchers are able to get their projects funded. That means we have less opportunity for investigators of color to get funding. The research is pretty clear that researchers of color have the most investment in conducting research in their communities.

What do you enjoy most about the work you do? It is such an honor to work with people who care about our communities. I work with multicultural teams and organizations. What I love is to be creative about the problem. Barriers and problems do not stop me. I find them an opportunity to develop a diverse strategy. I consider myself an out-of-the-box thinker. To be able to develop different approaches to different issues is an amazing opportunity.

I learn from people of all ages and income levels. I am always looking for something new that I learned from someone else. When we’re working as a team, we’re better together.

What are some of the most important lessons learned in fostering collaborations? Relationships are complex. A concept or idea has to evolve, and it often takes time, and I’ve learned to be more patient with the process

It’s okay to make mistakes. If we never try something new or take risks, we may never make mistakes. But it’s only through mistakes and picking ourselves back up that we can move on to the next task, to continue the work to effect change.

We’re all doing the best we can, and it’s important that we see the best in people. It’s hard to run counter-culture to the tendency for competition fostered in U.S. mainstream society. There is a tendency for people to hide ideas from others because those ideas might be taken away from them.

If we continue to operate in a mode of competition, then we perpetuate the perspective that there are limited resources, and we have to compete amongst each other to get our share. There are ample resources; we just need to distribute them differently.

Those of us who have different ideas of working need to remain steadfast, because collectively, we have the opportunity to effect social change.

Colors of Influence Winter 2009

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"This project cares about the people that are often the least cared about. When you have a system that’s limited in fiscal resources, often, it’s people with higher levels of income who receive attention."

"It isn’t enough simply to increase awareness. From my perspective, it is unethical to increase awareness without having the proper resources to be able to respond to the needs."

"We’re an amazing country in the United States. Our health system is the most expensive in the world, and we have the most amazing technology. And yet, we have incredible health disparities."


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