Breast cancer does not recognize age, ethnicity, socioeconomic status or gender. In honor of Hispanic Heritage Month (Sept. 15 – Oct. 15), we are honoring breast cancer survivors within the Hispanic community and all of those who has been affected by this disease. These courageous women are sharing in their own words what it means to be a survivor.
Each year, Susan G. Komen identifies the Priority Issues that will be the focus of our advocacy efforts for the coming year (read more here). But these aren’t the only issues affecting breast cancer survivors and their loved ones! In fact, here are five pieces of legislation, supported by Komen, that have been introduced thus far during the 114th Congress (current Congress) that impact the entire breast cancer community.
1. Breast Cancer Patient Education Act (H.R.2540/S.1192)
This proposed legislation directs the Department of Health and Human Services (HHS) to create an educational campaign to inform breast cancer patients who are planning to undergo surgery for treatment – especially those in racial and ethnic minority groups – about the availability of and insurance coverage for breast reconstruction, prostheses, and other options through the Women’s Health and Cancer Rights Act of 1998. While the decision to undergo breast reconstruction or use prostheses is a personal decision, all women should be made aware of their options and coverage.
2. Breast Density and Mammography Reporting Act (H.R.716/S.370)
This legislation will provide information to women and doctors on breast density and the potential impact it has on the detection of breast cancer. To understand your personal risk, it’s important to know your family’s medical history and your personal health history, and to have a discussion about breast density with your health care provider (especially if your mammogram shows you have dense breasts). Knowledge is power, and there may be additional, appropriate screening tools if you have dense breasts.
3. Cancer Drug Coverage Parity Act (H.R.2739/S.1566)
The Cancer Drug Coverage Parity Act aims to improve access to cancer treatments by requiring insurance companies to cover drugs taken by mouth and drugs taken intravenously at the same cost to patients. It should make no difference how a drug is taken and who administers it – patients should not be forced to choose a less-appropriate treatment option simply because an insurer provides less coverage for a cancer drug that happens to be administered by mouth rather than IV. Patients and their physicians should be free to make treatment decisions based on what is best for that patient.
4. Lymphedema Treatment Act (H.R.1608)
Lymphedema can be a serious side effect of breast cancer treatment. This bill will ensure coverage for prescribed compression therapy supplies, which are the cornerstone of lymphedema treatment. Inadequately treated lymphedema can lead to costly complications and even lifelong disabilities. Covering these supplies will improve patient care, while reducing the total health care costs associated with this chronic and potentially debilitating condition.
5. Patients’ Access to Treatments Act (H.R.1600)
This legislation would limit the amount patients must spend on specialty tiered medications. That means removing insurance barriers to lifesaving treatments – even as the cost of health care continues to rise. This legislation could alleviate the financial hardship that breast cancer patients may experience due to the increased cost-sharing implemented by some insurers.
Want to get updates on these pieces of legislation as well as Komen’s advocacy activities? Be sure to join us and become an advocate.
The following blog appeared in The Huffington Post on August 6, 2015.
Last month, when President Obama visited Kenya to participate in the Global Entrepreneurship Summit, he regrettably did not have the opportunity to visit the important region of southern Kenya that is home to the Maasai people and East Africa’s most iconic wilderness and the wildlife, to see firsthand how economic growth is fueled by partnerships and the entrepreneurial determination of the Maasai people.
In the 20th century, the Maasai, a tribe of traditional semi-nomadic cattle-herders, lost much of their land to the British and the Kenyan government. In recent years, the Maasai have been impacted by climate change and severe droughts. Rather than abandon their traditions and culture, 15 years ago the Maasai people of Kuku Group Ranch in southern Kenya near Mount Kilimanjaro, had a vision for how they could preserve and honor their heritage through ecotourism. They created a pioneering partnership between the eco-lodge of Campi ya Kanzi and the Maasai Wilderness Conservation Trust (MWCT) that has become a model for how conservation and community can come together to serve the wildlife, the wilderness and the Maasai people.
Enter Edward Norton.
Most of us know Edward as an exceptionally talented, Oscar-nominated actor and filmmaker. Over the past few years, I have had the opportunity to learn about another of Edward’s passions – conservation. He comes by this passion honestly – his father is an internationally renowned conservation activist – and has been committed to conservation causes for many years.
Since his first visit to the Campi ya Kanzi and MWCT in 2000, Edward has supported and served as U.S. Board President of the MWCT. His involvement spans about the same amount of time we at Susan G. Komen have worked with breast cancer programs in Kenya. Our mutual investment in the health of women in the region has had unanticipated but beneficial results. I asked Edward to join me in a conversation to share his thoughts on our unique partnership.
JUDY: Thank you for helping tell the story of how health and conservation work together.
EDWARD: MWCT works holistically with the Maasai on conservation, health, and education. The health of the community is of vital importance because we believe that successful, sustainable conservation programs work best when they come from a “people’s needs first” perspective. Meaning that people must first be healthy and thriving in order for them to be great stewards of their ecosystem.
At MWCT, our partnership with Susan G. Komen is the embodiment of successful, sustainable, holistic programs.
JUDY: As a women’s breast cancer organization, we couldn’t agree more on the wisdom of investing in health to strengthen communities. In Kenya, women are diagnosed with breast cancer at much earlier ages than African-American women — about 10 years younger. They’re often diagnosed at advanced stages of the disease. Access to information and health care is a significant problem. And we understand that women are often at the heart of the community. We’ve been funding breast cancer programs in Kenya since 2001, and gave our first grants to the Maasai Wilderness Conservation Trust four years ago, helping to underwrite the salary of a health director and a breast cancer education program. What specifically has been achieved with this support?
EDWARD: Support from Komen provided MWCT with a Health Director that serves the most rural and under-served Maasai communities in the region. The results of this investment in women’s health are truly transformative. In the process of educating women about their health to end breast cancer, the health of the entire community and its ecosystem has improved dramatically. You can see this in one incredible example where the women that attended the health outreach programs banded together to do more, to increase their empowerment and economic independence. They formed a group where, in partnership with MWCT and A New Course, the group started a seed bank that provides them with additional income while restoring the grasslands in this important ecosystem. The women are increasing their health, the health of their families, and the ecosystem. This all started with Susan G Komen’s investment. We are grateful to be a partner with Susan G. Komen.
JUDY: So it comes full circle -
EDWARD: It has truly made a difference for these women and this community. And on a programmatic level, it’s also allowed us at the Maasai Wilderness Conservation Trust to leverage the reach of a very small staff offering very rudimentary health services. Funding for the health director gave us the ability to connect with national health services, procure medications and identify equipment that we need, for example. Out of this very simple type of support, we’ve seen a lot of short- and long-term change, all for the better.
JUDY: That long-term change, the long-term sustainability of programs like these, is key. Komen works in 30 countries worldwide, in partnerships like these, always with an eye toward sharing what we know and helping to build programs that can be sustained locally for a very long time.
EDWARD – And it’s a model for other innovations that MWCT is working on, like a carbon credit brokerage and solar conservancies. We work best when we can bring together the macro resources and expertise of global organizations like Komen, with local people who are working to improve their lives.
JUDY – Edward, it’s very rewarding to be working with organizations like the Maasai Wilderness Conservation Trust and with advocates like you who are making a difference. Thank you for your dedication.
EDWARD – And thank you, Judy and Komen, for helping to jumpstart real progress in the lives
of the Maasai women.
By Tauane Cruz, Regional Manager, Latin America
This year marks the eighth year of Komen’s work to improve the lives of breast cancer patients, survivors and their families in Latin America. Through an extensive network of local partners, we are renewing our promise to advance the fight against breast cancer by engaging local communities, empowering women with evidence-based information, and delivering innovative projects aimed at strengthening breast health services.
As the fastest-growing population in the world, more Latin Americans are getting older and health care systems in the region are not always able to meet the needs of its people. Breast cancer is appearing more often in younger women, and many women are being diagnosed with the disease when it has already spread to other parts of their body.
At the end of May, through the generous support of the Caterpillar Foundation, Komen awarded six grants to organizations in Monterrey, Mexico and Sao Paulo, Brazil to try to combat some of these issues. These grants are working to:
- Educate young women with breast cancer and ensure that health professionals are able to advise them on issues specific to having breast cancer at a young age;
- Inform women about how they can access government-sponsored breast health services and educate them on specific policies and laws to guarantee that they are able to receive proper care for the disease;
- Improve the ability of health promoters and primary care providers to share accurate breast health information with their patients;
- Increase the quality of advanced screening and imaging services offered to the population to reduce the risk of women being wrongly diagnosed and make sure that they are prescribed the most appropriate treatment options.
Komen is also bringing together local breast cancer researchers and institutions to discuss breast cancer issues specific to their local communities.
Just last month, Komen organized the Meeting of Minds: Exploring Breast Cancer Research in Brazil, a meeting hosted by the University of Campinas in Sao Paulo on June 11 to discuss gaps and opportunities in breast cancer research and provide local researchers with specific advice on how to improve the chances of receiving funding for their important research.
Komen Scholars, Drs. Matthew Ellis and Melissa Bondy from Baylor College of Medicine, were joined by over 60 representatives from leading research institutions. Dr. Ellis shared that he was particularly excited to be a part of the “first international meeting hosted in the English language in Brazil,” which he hopes will encourage other institutions and organizations to collaborate with local researchers to advance research in the country. Among participating institutions were Brazil’s National Cancer Institute (INCA), the Sao Paulo State Cancer Institute (ICESP), MD Anderson, the Avon Foundation (Instituto Avon) and the Sao Paulo Research Foundation (FAPESP).
At the end of the meeting, Baylor College of Medicine and Unicamp joined together in a formal agreement to promote the exchange of skills and expertise in breast cancer research in Campinas, which is an important commitment to future advancements in the field.
We’re delighted to have the support of local institutions, our funding partners and supporters like you who help us to drive home the concept that where a woman lives doesn’t (and shouldn’t) determine whether she lives.
Interested in learning more about the breast cancer situation in Latin America?
Click here to read about the health care system in countries in Latin America, and common gaps and barriers experienced when patients try to access needed breast health services.
By Nikki Panico, Executive Director of Komen Southeast Wisconsin
No one wants to talk about it. No one wants to be diagnosed with it. The reality is that those diagnosed with metastatic breast cancer are forever fighting.
Long before I started working for Komen Southeast Wisconsin, I watched my mom and aunt battle metastatic breast cancer, and lose their fights. I remember how bewildered and confused my sisters and I were about the diagnosis, treatment options, insurance constraints, and the emotional journey they were going through. We would have found so much benefit from an open forum that discussed these issues.
There is a lot of talk about screening and early detection, with the hope of one day being called a survivor. However, many will battle breast cancer until the end. They need to know that their issues and needs are a priority for Komen.
Earlier this year, our team at Komen Southeast Wisconsin set out to build new relationships with patients who felt they had been forgotten. We teamed up with GE Healthcare to host a Metastatic Breast Cancer Symposium to get the ball rolling – offering basic science, clinical and survivorship information related to metastatic breast cancer.
The event gave Drs. Ian Krop and Danny Welch, two of our Komen Scholars (some of the top researchers in the world) and advocates to share their latest findings. It also allowed people in our community, who participate in the Race and other events, to see where Komen research dollars are being used.
The event created new opportunities for researchers and patients alike, with Komen Scholar Dr. Danny Welch (University of Kansas Cancer Center) sharing that he made new friends who offered insights he has already brought back to his lab.
Another important voice in metastatic breast cancer was in attendance: Komen advocate and President of the Metastatic Breast Cancer Network, Shirley Mertz, who has been living with metastatic disease since 2003. Shirley encouraged our team’s hard work, saying, “We often put screening and early detection at the forefront, while this more difficult subject may be put on the backburner. This symposium will start to change that outlook.”
Other attendees shared their own experiences. One woman – a member of our Komen SE Wisconsin Board – was amazed to discover she was on a drug that one of the Komen Scholars helped to create! Another shared how the research presented gave her a sense of confidence in her doctor as well as her treatments.
Their words confirmed that this is an event from which the Milwaukee community, and the breast cancer community, can benefit.
It wasn’t all that long ago that society wasn’t even comfortable saying the word “breast.” Sometimes it takes an open forum and a committed mission to break down those barriers. I’m proud to be a part of an organization – and a wonderful team – who are focused on every person who is diagnosed with breast cancer.