To Combat Breast Cancer, End the Stigma

The Partnership would like to share the following editorial, which ran in the July 14th issue of The National, an English newspaper launched by the Abu Dhabi Media Company.

‘Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” These are the words of Marie Curie, the Nobel-prize winning scientist who was the first to treat cancer with radiation. Her words are more relevant than ever today in the Emirates, where breast cancer has taken such a deadly toll on women, and the stigma attached to the disease continues to prevent women from getting diagnosed early enough to survive it. The mortality rate for women with breast cancer in the UAE is unacceptably high. As The National reports today, four out of five women diagnosed with breast cancer in Dubai have an advanced form of the disease by the time they finally seek treatment. And largely as a result of such late detection, 44 per cent of breast cancer cases are fatal...
For a country in which women have made remarkable strides in other facets of life, these are distressing statistics. Women make up over 60 per cent of students in state universities and consistently outperform their male peers in school. Female literacy in the Arab world is near 80 per cent; in the UAE it is 92 per cent. Women hold prominent positions in the Government and are also leading initiatives in the fields of arts, business and fashion. Why then has this society not realised its collective obligation to take the steps necessary to reduce the number of deaths from breast cancer?

The stigma associated with the cancer is doubly concerning considering that the UAE has some of the most state-of-the-art facilities to treat cancer. But despite the presence of world-class medical personnel and equipment, many women remain reluctant to have routine examinations and only do so when it is too late. Rashid Hospital in Dubai has even introduced two new methods of early detection that are found nowhere else in the Gulf. With all these options, there should be no reason for so many cases of breast cancer to be diagnosed at such a late and lethal stage. Yes, effective health care depends on individual responsibility. But women need to be better informed of what is at stake.

Over one million cases of breast cancer will be diagnosed this year worldwide, according to the World Health Organisation, and more than a third of women with breast cancer will eventually die from the disease. Even though medical breakthroughs may continue to decrease the number of deaths associated with the disease, early detection is still the single greatest factor in helping women beat the disease.

In these circumstances, a public dialogue about the importance of breast cancer screening is even more important than any set of technological advances. Dubai Hospital is to be commended for launching an awareness campaign that will generate a public conversation aimed at changing attitudes towards the detection and treatment of breast cancer. We have the material means; all we need is to change the way people think.

Now is the time we must understand this disease more and fear it less.

http://www.thenational.ae/article/20090714/OPINION/707139910/1033
Read more!

Jordan Workshop on Starting a Support Group Energizes Local Advocates

By Susan Brown, Director, Health Education, Susan G. Komen for the Cure®

Susan and colleague, Sandy Finestone, conducted a workshop with members of the Jordan Breast Cancer Program in Amman, June 3-4, 2009. Together, they are developing a curriculum and materials for institution-based support groups.

Sandy Finestone and I spent two days with more than 20 women in Amman, Jordan. The topic of our workshop was “How to Start a Support Group,” but the information and passion shared by participants really extended beyond that topic. We watched women support each other—with a hug, a smile, a pat on the shoulder—when a group member was tearful as she recalled a friend who had lost her life to breast cancer and when another got a call on the second morning that her friend had died...

The women were there because they want to do something to help women in their communities who are diagnosed with breast cancer. No, they really want to do MORE, because they are already at work in their communities helping women with breast cancer.

We observed women think about new concepts, listen hard (as we did) to simultaneous translators to not miss anything that was said, work in groups, exchange ideas, and enthusiastically participate and compete in an ice breaker about old Arabic songs that caused a lot of laughter.

We saw that women who are involved with the breast cancer cause are more alike than not. Wherever they are, they are energetic, passionate, committed, creative, deliberate, and determined. We are eager to learn all of the great things they accomplish in the coming months and years. Read more!

Women are the World's Peacemakers

By Dr. Samia Al-AMoudi
I was proud to be part of the 21-member international delegation supporting the first Susan G. Komen Global Race for the Cure®. Our delegation included women from 18 countries--women from different cultures and races, and with different religious backgrounds. But we all spoke the same language when it came to fighting breast cancer. This was not a political or social fight, but a message of pure love for each other and for every other person on this planet...

We came to tell the whole world that breast cancer knows no boundaries and women's issues are the same everywhere. We might not have been able to prevent our own breast cancer diagnoses, but we are determined to do all that we can so that our daughters can live in a world free of breast cancer.

Dr. Jill Biden, a long-time advocate for breast health education and wife of U.S. Vice President Joseph Biden, said to the Race participants, “You are paving the way for a breast cancer-free world through your efforts."

For the Race, Komen Founder Ambassador Nancy Brinker brought together women from across the globe to write a new page in a new era of peace to make breast cancer history. This is the way I felt as a Saudi woman, and as a breast cancer survivor attending the Global Race. I am a happy that the U.S.-Middle East Partnership for Breast Cancer Awareness and Research is helping to bring us together. I wanted to share my feelings with women of all nations.


Dr. Samia Al-Amoudi isAssociate Professor and Consultant Obstetrician Gynecologist
Head of Sheikh Mohammed Hussein Al-Amoudi scientific chair for breast cancer
King Abdul-Aziz University, Jeddah, Saudi Arabia

Read more!

Daughters’ Marriage Prospects Top Concern for Woman with Cancer

By Hana Abu Shareb
As a nurse, Hana Abu Shareb, Health authority Abu Dhabi has worked with many people with cancer for the past eight years. She shared with the Partnership how one patient’s reaction to a breast cancer diagnosis has really stayed with her.

“I worked with a 45-year-old woman who was shocked to receive a breast cancer diagnosis. Her shock quickly changed to concern for her daughters who she felt would lose many marriage opportunities based on her diagnosis. While this is not unusual in our culture—not just for breast cancer but for any life-threatening disease--I was still surprised to hear her voice this as her primary concern.

Women, especially mothers, regularly put their needs behind the needs of their families. But, because this woman shared her concerns with me I am prepared to discuss this with other women and better guide them in the next steps for referral and treatment. I do not know how things ended up with this courageous woman because she returned to her homeland. However, her impact on me continues to benefit others who receive the same diagnosis.” Read more!

Stories from the Field

Alice Rezien, of the Suzanne Mubarak Regional Center for Women’s Health and Development, in Alexandria, Egypt, submitted the following post.

In conjunction with International Women's Day (February 10-12, 2009), the Suzanne Mubarak Center organized and conducted a three-day training program for 30 nurses working in outpatient clinics and family health care centers in different sectors of Alexandria. The training, titled Breast Cancer: Awareness, Early Detection, Breast Self Examination, Treatment Modalities, Peri operative Care and Quality of Life, focused on the development of knowledge, skills, and attitudes necessary to enhance awareness about breast cancer in nurses, and women, in general. Presenters also strove to motivate participants to practice breast self examination. Further, the Center promotes quality care for women with breast cancer throughout the stages of treatment and rehabilitation, with the ultimate goal of ensuring an acceptable quality of life.

Read more!

أسبوع الشراكة للعمل الأجتماعي

لتظهر مساندتك لنشر الوعي والتأييد لمكافحة سرطان الثدي: قم بتنظيم فعالية خلال انعقاد أسبوع الشراكة للعمل الأجتماعي الأول للفترة من 24- 30 آيار، 2009

تتشرف شراكة الولايات المتحدة الأميركية والشرق الأوسط لمكافحة سرطان الثدي ونشر الوعي والبحوث أن تعلن عن أنعقاد أسبوع الشراكة للعمل الأجتماعي الأول. حيث سيجتمع في شهر آيار الحالي نساء ورجال مهتمين بموضوع سرطان الثدي قدِموا من الشرق الأوسط وشمال أفريقيا ليعبروا عن آرائهم بصوت مسموع. إذ يمكن لفئة قليلة أن تؤثر تأثيراً فعالاً. ويمكن ان نظهر مدى عزمنا وقوتنا جماعياً لدى قيامنا بتنظيم سلسلة من الفعاليات المحلية حول أهمية نشر الوعي لمكافحة سرطان الثدي والقيام بالكشف والفحص المبكرين عنه. وأليك بعض الأفكار عن كيفية مشاركتك معنا


أعمل على تنظيم أو الأشتراك بفعالية في منطقتك: يمكن أن تشمل هذه الفعالية أي شئ ---- كالقيام بجمع مجموعة من الأصدقاء في بيتك، مكان عملك، أو في أي مكان عام. وكلما كان عدد الأشخاص المجتمعين أكبر كان هذا أفضل.

قم بتشجيع الحضور لهذه المناسبة: يمكنك أن تعلن عن هذه المناسبة في الموقع الألكتروني الخاص بالمنظمة، على صفحتك الشخصية للفيسبوك، لوحة أعلانات المنطقة- وفي اي مكان يمكن أن يشاهده الناس. الرجاء إرفاق الموقع الألكتروني للشراكة (www.bcpartnership.org) وشريط وردي اللون للدلالة على سرطان الثدي.

أعمل على القيام بواجب الضيافة لهذه المناسبة والتقاط بعض الصور: إذ يمكننا حينها أن نتقاسم ما تحصل عليه من نتائج مع شبكة الشراكة كلها (bcpartnership.ning.com).
قم بالتعريف عن نفسك: سنقوم بإدراج الفعاليات الأكثر إبداعاً من التي تصل لآسماعنا على موقعنا الآلكتروني (كما يساعد التقاط الصور وتصوير افلام الفديو على أبراز القصة بشكل أوضح). كما نعمل على أيجاد طرق أخرى تساعد في التعريف بجهودك، لذا إبق مصغياً لنا!

للمزيد من المعلومات، الرجاء زيارة الموقع الخاص بأسبوع الشراكة للعمل الأجتماعي أو أرسال إيميل على العنوان الألكتروني التالي partnership@bcpartnership.org.

Read more!

Partnership Community Action Week

Show your support for breast cancer awareness and advocacy: organize an activity during our first Partnership Community Action Week, May 24-30, 2009

The U.S.-Middle East Partnership for Breast Cancer Awareness and Research is proud to announce the first Partnership Community Action Week. This May, women and men from across the Middle East and North Africa who care about breast cancer will come together to make their voices heard. A few people can make a major impact. By holding a series of local activities on the importance of breast cancer awareness, early detection, and screening, we can collectively show our strength. Here’s how you can get involved:

1.) Organize or join an activity in your community: Your action can be anything-- gather a group of your friends together at your home, office, or in a public place. The more people that get involved the better!

2.) Promote your event: You can post your event announcement on the Partnership network, on your organization’s website, your personal Facebook page, on community bulletin boards—anywhere people will see it.

3.) Host your activity and take photos: We can then share your results with the entire Partnership Network (bcpartnership.ning.com).

4.) Be recognized: The most creative actions we hear about (photos and video really help tell your story) will be featured on our website. We also are exploring other ways to recognize your efforts, so stay tuned!

For more information see our Partnership Community Action Week pager
http://tinyurl.com/communityactionweek

Questions? Email us: partnership@bcpartnership.org.

Read more!

“Breast Cancer Detection Under Budget Constraints”; Mammography Screening in Low- and Middle-Income Countries

By Marilys Corbex

The editorial in the last issue of the UICC Global News Alert (the International Union Against Cancer newsletter) is about the use (and abuse) of mammography screening in low- and middle-income countries, which presents an important lesson for advocates working with breast cancer in the Middle East.

The article reflects the growing conviction in the scientific and expert community that low- and middle-income countries should avoid engaging mammography screening too quickly as this consumes a lot of resources without benefiting many women. It also explains that advocates should be careful about pressuring their ministries of health for mammography screening as it can be counter productive to their cause. Instead, advocates should advocate for better treatment and effective early diagnosis that is readily accessible to all women of the country.

The editorial (below), plus other interesting related topics, is available at: http://www.uicc-community.org/templates/ccc/images/GNA_March%202009.pdf

Breast Cancer Detection Under Budget Constraints

By Paola Pisani, Senior Epidemiologist, Oxford University, and Joe Harford, PhD, Director, Office of International Affairs, NCI, Bethesda.

In developed countries, the debate regarding the benefits and harms due to possible overtreatment of indolent tumours discovered by mass screening via mammography continues. The health care infrastructure required for the management of suspicious or abnormal mammograms and for the treatment of breast cancer is generally present in these countries and is taken for granted in discussions.

However, the situation is different in low- and middle-income countries where breast cancer incidence is lower and where the requisite infrastructure for breast health is often suboptimal. In these settings, governments, health providers and advocacy groups struggle to develop sustainable strategic plans to control the disease, which is often the most common cancer in women, although it occurs at a lower rate than in Western countries.

These plans often focus on the introduction of mammography in emulation of early detection and screening programs that exist in more developed countries. There is no question that early detection can have a profound and positive impact on breast cancer outcomes as shown by falling mortality rates—the chief measure of efficacy. However, by focusing exclusively on introducing the detection test, health systems in low- and middle-income countries often fail to ask whether they are really ready to deal adequately with what is found through the new screening program.

Improvements in breast cancer outcomes in the United States and Western Europe began before the introduction of mass screening of asymptomatic women. In these venues, breast cancer awareness grew together with the development of comprehensive health systems that made quality care accessible to the population at large, raising expectations and trust and, eventually, demand. Breast cancer mortality began to fall in the 1960s and 1970s, in generations of young women who used health services for contraception, safer pregnancies and provision of healthcare for their children. At this time, breast cancer incidence was already increasing and state-of-the-art treatment relied largely on surgery and radiotherapy (chemotherapy and tamoxifen were to come later).

In the 1990s, mortality rates began to fall in women of all ages before all those eligible were able to receive a mammogram. The improvement in outcomes caused by the early (prescreening) movement can be attributed to the systems set up, as part of the screening policy, to manage the disease—systems that provided quality diagnosis and treatment to all breast cancer patients, most of whom still presented with overt symptoms of the disease (e.g., a palpable mass). Programs for screening asymptomatic women were implemented in an environment that already had an enhanced capacity to diagnose and treat breast cancer effectively.

In many low- and middle-income countries, breast cancer diagnosis and treatment are usually of low quality, or access to quality care is restricted to those who can afford to pay for it. In many poorer countries, only a small subpopulation of women gets state-of the-art breast health care. The introduction of mass mammography in the absence of a health care system capable of dealing with the suspicious and abnormal mammograms that are inevitable is a classic case of “cart before the horse”. Without generalised access to diagnostic and treatment services, low- and middle-income countries will see neither the early benefits of screening observed in the West nor the late ones that follow 10 years of regular screening.

In those societies where breast cancer awareness is raised, stigma is reduced and barriers to adequate diagnosis and treatment are removed, near-term improvements in breast cancer outcomes are likely to mimic those seen in the West. Health administrators in low- and middle-income countries have every reason to invest in delivering effective care to the population at large rather than investing in mammography screening, which will have a lower yield than in the West. Good management of early—yet symptomatic— tumours produces short-term, measurable reductions in mortality. Success of these programs aimed at reducing mortality and suffering will encourage funding and participation of the population. The consideration of more sophisticated and expensive programs to screen asymptomatic women is not today’s highest priority.
Read more!

Sharing Strategies on Starting Support Groups in Kuwait

Breast Care Kuwait Patient Support Workshop. Picture Credit: Carol Jabari 2009

In February, Breast Care Kuwait held a regional conference on breast cancer support groups. The two-day workshop demonstrated the importance of psychological support during cancer treatment and provided guidance on starting a group. Debby Stewart, a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program in Baltimore, Maryland, attended the conference and was kind enough to share her experience at the conference below.

"I have been a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program for nearly five years. The program started 11 years ago when Lillie Shockney, a fellow Hopkins nurse, saw a need to support women with breast cancer....

She started with five survivors who volunteered to provide support for breast cancer patients. The volunteer program grew to over 30 passionate, well trained women whose mission is three-fold: to make a difference for women newly diagnosed, to educate the community on breast cancer awareness, and to advocate and support research and breast health initiatives. I came to the Hopkins Survivor Program because I am a 30-year breast cancer survivor. I was first diagnosed in 1979 at age 25 when breast cancer was still a taboo subject and people were just beginning to talk about the disease publicly. A few brave women shared their stories in magazines and television interviews, but there were no Komen or pink awareness ribbons to spread awareness. When I first learned I had cancer, I was shocked and devastated to lose my breast, but my husband, family, faith, and friends saw me through. It was my experience with a volunteer, a survivor, who helped show me that that there is life beyond cancer. That made me want to support other women.

Dr. Nouralhuda Karmani, the Founder of Breast Care Kuwait, asked me to speak at her workshop on breast cancer survivors, which was held in conjunction with the first annual Kuwait Breast Diseases and Oncoplastic Reconstructive Surgery Conference. I accepted her invitation because I am excited to tell others about the success of the Hopkins model and share stories about the amazing volunteers with whom I work.

The first day of the workshop began with a quick breakfast and a review of plans with Carol Jabari. Carol is an American-born nurse, who lives and works in East Jerusalem, her home of 20 years. She has been involved in breast cancer issues, including establishing a support group of volunteers seven years ago—no easy task. At the conference, the two of us took turns presenting information on our respective programs. It was an honor to work with Carol who is recognized as a leader in nursing and in the U.S.-Middle East Partnership for Breast Cancer Awareness and Research.

On the second day, we presented our respective support programs to doctors and survivors. Carol began by describing the program she leads. I followed, explaining Lillie's vision and the steps she took to "prove" that the program works to people who were originally skeptical of the idea, including our radiologist.

In the afternoon, Carol and I met with the survivors again. I was pleased to see so many potential volunteers, both breast cancer survivors and family members. We formed a circle of chairs that quickly filled with women in both traditional and western clothing. Before we knew it, those in traditional dress unveiled to reveal their lovely smiles. Using microphones and earphones, our English and Arabic was translated to enable smooth communication.

We asked the group to share their personal breast cancer stories. One woman described her experience and how she was supported throughout the process by her family. Another described the importance of a survivor volunteer from the U.S. who changed her treatment perspective and gave her a more hopeful outlook. Two women had started speaking out about their breast cancer experience in their country (Saudi Arabia)—one was “breaking the silence” and the other had started a support group. Another woman shared that she cried even after treatment ended. These women wanted to share their stories, emotions, and what they had learned. What an amazing experience for me. I thought this is no different than when we gather for our retreats and support groups in the U.S. Here, a world away from mine, I once again felt the courage and witnessed strong women weaving their lives together through their shared experiences. We are women on a mission, women living life with its struggles and uncertainties, making sense of it all.

With some patience and obstacles to overcome, I suspect that this group will form into a volunteer team. They have support and direction from Nour as everyone figures this out together. It is open to possibilities. I am very excited for them. Maybe this is how Lillie and her first volunteer, Judy, felt 11 years ago. First a vision, then a movement filled with stories and passion to make a difference.
Like Lillie Shockney, Dr. Karmanhi has a vision and an unstoppable drive. The volunteers will continue to find their voices to share beyond their group to serve others. Diagnosed with breast cancer 30 years ago, I see Kuwait at a similar point. But I believe they will move rapidly into an era of awareness. As a former volunteer, I hope they find that giving of themselves is rewarding and meaningful, and that this work becomes accepted among cancer survivors and their families."

-Deborah Stewart is a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program in Baltimore, Maryland

Read more!

International Women's Day and Mother's Day

Athar Foundation teaching university students about breast cancer. Picture Credit: Athar Foundation, Yemen

This spring, advocacy groups from throughout the Middle East organized outreach events for International Women’s Day on March 8th and Mother's Day on March 21st.
The following is a sampling of events that have taken place in the past few months:

In February, the group Breast Care Kuwait held a regional conference on breast cancer support groups. Partnership advisor Carol Jabari of the Patient Friends Society and Debby Stewart, Volunteer Coordinator for Johns Hopkins Medicine’s Breast Health division shared with the participants their experiences with support groups.... The two day workshop was designed to teach women about the importance of psychological support during cancer treatment and to walk them through the steps of starting a group.

Neel Stallings was recently profiled in an advertisement for Pandora Jewelry in Glamour Magazine’s March 2009 issue, for her breast cancer advocacy work. Stallings is a founding member of the Charlotte, NC, affiliate of Susan G. Komen for the Cure®. She has been a passionate breast cancer advocate since she and her sister were diagnosed and treated for breast cancer. Neel was a speaker at the U.S.- Middle East Partnership’s “Building Bridges for Advocacy” MENA Regional Advocacy Conference in Amman Jordan, and spoke about how to organize and recruit volunteers. See the advertisement here.

To celebrate International Women’s day this year The Egyptian Society for the Promotion of Women and Children’s Health held lectures about cancer pain relief and palliative care on March 5th for oncology nurses at Mansoura University Hospital in Cairo. A second workshop on March 7th taught oncology nurses how to protect themselves when working with chemotherapy agents. The society also convened a meeting for local women to discuss diseases, cancer risk factors, methods for early detection and how to improve life style.The society is preparing for a symposium on Mother’s Day on cancer prevention, methods for early detection as well as how to perform breast self exams and the psychosocial impact of body image and sexuality for women with breast cancer.

Athar Foundation in Yemen held an awareness workshop with female university students on the symptoms and health effects of breast cancer and physical and psychological impact of the disease. The sessions sought to educate women about breast self-exams and stressed the importance of screening. This Mother’s Day, Athar is planning a Safe Motherhood Awareness session which will teach women about breast cancer.In Syria, the Syrian Society of Senology is working with local hospitals to offer women a free mammography on Mother's Day. In addition the society is organizing a ten-day public awareness campaign on breast cancer from March 18-30 at Beirouni University Hospital, a comprehensive cancer center in Damascus.

The Women and Fetal Imaging group in Egypt offered free mammograms every Tuesday in February and March in honor of International Women’s Day and Mother’s Day.

In the United Arab Emirates, the Health Authority of Abu Dhabi is planning to celebrate Mother’s Day by distributing care cards from sons and daughters to their mothers to remind them to perform regular breast exams. The cards will be distributed through local newspapers and magazines on March21st. This will be followed by a breast cancer awareness campaign in April.

Finally, the Yemen Family Care Association will be conducting two general awareness sessions and distribute brochures and posters regarding breast cancer early detection. Also they will place feature articles in two newspapers on the importance of early detection.

Does your organization have anything planned for Mother’s day this year? Post your event here, or discuss it in our Network forum!

Read more!