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.

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“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.
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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

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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!

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Bone Drugs May Help Fight Breast Cancer

Photo by Erik Charlton

A recent study has found that a class of drugs that are most commonly used to combat bone loss may reduce by a third the chance that some breast cancers will spread or recur--NY Times.

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US-Middle East Partnership in the News: CNN Vital Signs

This past October, CNN’s Barbara Starr attended the Partnership’s Regional Breast Cancer Advocacy Conference in Amman, Jordan, and produced the above piece for the show Vital Signs. The report highlights the advocacy efforts of Dr. Samia al-Amoudi, a Saudi obstetrician and long-time Partnership supporter. Starr also interviews Dr. Mahmoud Sarhan, director general of Jordanian partner institution King Hussein Cancer Center. The report underscores many key issues discussed at the conference such as how to dispel cultural taboos, how to convince women to do self breast examinations, and increasing the number of women screened. Read more!

الرضاعة الطبيعية تحمي الأم من سرطان الثدي

(Breast Feeding Protects Mothers from Risk of Breast Cancer)

فوائد الرضاعة الطبيعية عديدة ومفيدة سواءً للأم او الطفل ، بالنسبة للطفل فإنها تساعد جهاز مناعته وتقويها ضد بعض الأمراض المعدية هذا وتعتبر الرضاعة الطبيعية جسر التواصل بين الام ووليدها فهي تقوي الروابط بينهما وتوصل له بهذه الطريقة الحب والحنان والدفء فيشعر وليدها بنفس المشاعرتجاهها .
اما فوائد الرضاعة الطبيعية بالنسبة للأم فهي كثيرة ومن ضمن هذه الفوائد ماأظهرته دراسة حديثة ان الام إذا قامت بإرضاع طفلها لمدة سنة خلال حياتها كلها فإن ذلك يقلل من مخاطر إصابتها بمرض سرطان الثدي .
وقامت مؤسسة أبحاث السرطان العالمية بتحليل 7 آلاف دراسة سابقة وتوصلت الى أن الرضاعة الطبيعية تقلل الإصابة بسرطان الثدي بنسبة 4.8 في المائة .
ولذلك من المهم للنساء معرفة فوائد الرضاعة الطبيعية فقد أظهرت الأبحاث الحديثة ان 3 من كل 4 نساء في بريطانيا لايعرفن أن الرضاعة الطبيعية تقلل من مخاطر الإصابة بسرطان الثدي وتقول الدراسة ان 3 أرباع النساء يمارسن الرضاعة الطبيعية إلا أن 22 في المائة منهن فقط هن اللاتي يواصلن الرضاعة الطبيعية بعد 6 أشهر . فلذلك من المهم تكثيف الوعي عن فوائد الرضاعة الطبيعية في المجتمع .

(A new study shows that breastfeeding reduces the risk of Breast cancer. If a woman breastfed her baby for a year once in her lifetime, it would reduce her risk in getting breast cancer by 4.8%)

Modia Batterjee

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Partnership Spotlight Series: Creating the Baseline Assessment of Breast Cancer Awareness and Care in the Palestinian Territories

Carol Jabari laughed out loud the first time I asked her to describe her experience putting together the US Middle East Partnership’s Baseline Assessment of Breast Cancer awareness and Care: West Bank, Gaza, and East Jerusalem. This past summer, in the sweltering heat of the Palestinian July, she and a team of local researchers investigated the current status of breast cancer services in the West Bank and Gaza. “We worked 18 hours a day for a month to get that thing done,” she recalled, a touch of incredulity in her voice. Despite the long hours and grueling schedule, Carol believes that the final report represents an unprecedented and invaluable resource for everyone working with breast cancer in the Palestinian territories.... The assessment, which Carol presented at the Partnership’s Regional Breast Cancer Advocacy Conference held in Amman, Jordan, was a decisive first step towards improving breast health in the Territories and a valuable tool that will help direct Ministry of Health strategic breast health plans for 2009 and beyond.

The US-Middle East Partnership approached Carol to take on an assessment of this size and scope in the Palestinian Territories because breast cancer has long been a significant problem with few resources available to address it. Carol, who has been working on breast cancer issues for over twenty years in the Territories, was a natural choice for the job. She has spearheaded several innovative breast cancer initiatives in the region and has worked with local government officials and international organizations. Carol’s accomplishments include: helping establish the first mammography unit in East Jerusalem; drafting the National Breast Cancer Screening Guidelines for the Palestinian Territories; establishing the Reach to Recovery program—a training program that instructs people on how to do outreach to breast cancer patients; and founding the Patient Friends Society, the only organization in the territories that offers psychosocial support for breast cancer patients.

Regardless of Carol’s familiarity with the Palestinian Territories, gathering the requisite information to distill a clear picture of breast cancer conditions on the ground was still a difficult undertaking. To start, the healthcare infrastructure of West Bank, Gaza and East Jerusalem is still in disarray from years of conflict with Israel and there is a lack of services for the more than 1.5 million women who live there. In addition, the Palestinian Authority grapples with the challenge of providing services with limited resources across a fractured geographical area. As a result, access is a huge problem and it is very difficult to reach people with the myriad checkpoints, military zones, and security walls that crisscross the landscape. Finally, cancer statistics, the responsibility of the Palestinian Central Bureau of Statistics and the Ministry of Health, are questionable and the health information system is not integrated, comprehensive or fully functional.

Despite the difficulty of the task and the obstacles that lay in their path, Carol Jabari and her team were undaunted. The team did in–depth personal interviews with hospital directors, administrator, and other key personnel across the three main health sectors. The team conducted focus groups of well women in four different communities in Nablus, Hebron, Bethlehem, and Jerusalem districts and interviewed women living with cancer from Gaza, the West Bank and Jerusalem. These women shared their experiences living with cancer, detailed the difficulties they had accessing care and shared their hopes for the future. They got the information they needed first-hand from in-depth interviews and focus groups. When checkpoints prevented them from doing interviews, she did them over the phone. Overall, she found that despite all the obstacles, people were very receptive to what she was doing. Ministry of health officials lent their full support to the project. “People were quite forthcoming,” she said. The women trusted her and were eager to share what they knew.

After Carol and her team had gathered all the information they needed, the next step was to analyze their findings. Although she was not surprised by many of her findings, such as the and physical barriers to care and lack of infrastructure and capacity to handle breast cancer cases, what amazed her was the lack of awareness among Palestinian women about breast cancer. For example focus group of well women from Hebron and Nablus revealed a consistent lack of understanding among the women who participated. At the end of the session, “I was shocked at how uninformed they were. They didn’t know anything!” In fact, they found that because NGOs in the past had focused their breast awareness campaigns at rural women, “we found that women from rural villages actually knew more about breast health than city women did.” It was proof that the Palestinian Territories still have a long way to go and a lot of work to do to improve breast health awareness.

Based on the results, Carol believes that there are several aspects of care that need to be addressed immediately, including:

• Upgrading the knowledge and skills of the professionals in West Bank and Gaza, through web or video conferencing and disseminating treatment guidelines through educational sessions.
• Training and recruiting more qualified x-ray technologists, including more female technicians
• Tackling the dearth of knowledge about breast cancer by funding programs that inform the public about screening protocols, referral mechanisms and the importance of early detection

Despite all the challenges, Carol remains hopeful about the task ahead. What gives her hope is number of people she met who are committed to improving breast care in the Palestinian Territories. The Baseline Assessment is a first step in the right direction. Now government officials, NGOs, and implementers in the development world have a better idea of where the need exists and can strategically plan and implement concrete programs that work towards improving awareness and breast health care in the Territories. With the assessment in hand and a little bit of elbow grease, advocates in the Palestinian Territories are helping pave the ways towards meaningful long-term change.

Read the Baseline Assessment of Breast Cancer awareness and Care: West Bank, Gaza, and East Jerusalem

Carol Al-Jabari is the US Middle East Partnership for Breast Cancer Awareness and Research’s local representative in the West Bank. She is a trainer to promote breast cancer screening among professionals and student nurses. Currently she works as the executive director of the Patient Friends Society in Jerusalem.

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JEDDAH – Nearly 700 girls from 54 private girls’ schools in Jeddah, who were selected to be breast cancer national awareness ambassadors, visited a photo and documentary exhibition on breast cancer at King Abdulaziz University (KAU) in Jeddah Tuesday. The breast cancer awareness program has been organized by Jeddah private schools and Sheikh Muhammad Hussain Al-Amoudi Endowed Chair Fund for Breast Cancer at KAU.The exhibition was designed to teach the visiting student ambassadors how to save lives by increasing awareness of breast cancer through education and encouraging an early detection plan to increase chances of surviving breast cancer.When breast cancer is found early, the 5-year survival rate is 98 percent, according to recent research information presented in the exhibition, with mammograms being among the best early detection methods. One in eight women are prone to be diagnosed with breast cancer in her lifetime.The students were alerted to the inherited dangers in ignoring or keeping quite about this deadly disease.The exhibition was attended by Olfat Qabani, director of social affairs at the Jeddah Chamber of Commerce and Industry (JCCI) and Dr. Samia Al-Amoudi, supervisor of the Breast Cancer Chair Fund at KAU.At the end of the exhibition, scholarly papers on breast cancer from KAU received awards of appreciation. – Okaz/SGhttp://www.saudigazette.com.sa/index.cfm?method=home.regcon&contentID=2008120323634&archiveissuedate=03/12/2008

Modia Batterjee

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Teaching and healing

A teacher in the United States is teaching her students about cancer... just a reminder that teaching and strength goes both ways.

Link to the video



Transcript below:

The relationship between a student and teacher can be incredibly powerful.
In a fourth grade class in Littleton, Colorado the connection is not only strong, but healing too.
Kim Christiansen explains.
"So what do we know so far?"

TEACHABLE MOMENTS.
THEY CAN HAPPEN AT ANY TIME.
IN MRS. DEL DUCA'S 4TH GRADE CLASS -- MAPS AND TEXTBOOKS TAKE STUDENTS TO PLACES FAR AWAY IN THE IMAGINATION.
A LITERARY ESCAPE FOR STUDENTS AND THEIR TEACHER.

"You know what they actually help me you know cause I can't think about my real life when I was 25 of these guys running around needing my attention...so I tell them you know I hope I can help you as much as you've helped me."

IN HERE MRS. DEL DUCA CAN ALMOST FORGET SHE HAS STAGE 4 COLON CANCER. SHE'S TOLD STUDENTS THE SMALL PURSE SHE WEARS IS FOR THE CHEMOTHERAPY...

"A lot of times, it's kinda harsh for her to have all the chemo and everything else, so I think it just makes us happier and her happier to have us here...right now my statistics from what I've researched is 10% to live for the next 5 years, so that's pretty low."

THREE TIMES SHE HAS TRIED AND FAILED TO GET HER INSURANCE COMPANY TO PAY FOR ADDITIONAL SURGERY AND CHEMOTHERAPY.

"Like I said in the board meeting experimental depends on if you have cancer or not."

UNDAUNTED...SHE WILL KEEP TRYING AND KEEP TEACHING...

"We just gotta keep on going in life instead of just stopping when you have a wall you have to climb pretty much...so instead of stopping when there's a struggle - just keep on going."

TEACHABLE MOMENTS -- YOU MIGHT FIND THEM IN A TEXTBOOK....

"Then it says but you children seem to be bringing her back to life...you guys I'm going to make a connection to that...cause you guys help me get through my sickness, so these children."

WHAT YOU'LL IN MRS DEL DUCA'S 4TH GRADE CLASS ...ARE WORDS TO LIVE BY...AND A TEACHER FIGHTING TO LIVE.

"I hope that they learn much more than a textbook could even teach them as far as empathy and compassion for others...I think that they have. These are my kids and i love them...I do."

Del Duca's friends and family are trying to help her raise the more than 80-thousand dollars she needs for a treatment that her doctor believes may actually be her cure.

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