Jordanian Nurses on President Obama

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Interview Quotes

My experience researching the case about the JBCP was a transformative experience. I have learned so much about so many things -- everything from public health to business operations to capacity-building. It was a wonderful compliment to my Zuckerman Fellowship experience.

The process of transcribing my interview recordings has been slow-going and tedious, but I am really enjoying the opportunity to take a second look at what I learded and reflect to a deeper degree.

Here are some quotes that I transcribed today:

"I looked at the subject and I thought, okay, we have an obligation to the community. We have to do something, and then the thing came as breast cancer. If you look at cancer control programs, they look at the burden, and the resources, and what the country can offer. So the burden was #1 cancer in Jordan is breast, even if you combine male and female, breast cancer will stand out as the most common cancer in Jordan. If you took the females, 37-38% of all cancers in women in Jordan are breast cancer. (We don't have many cervix cancer cases.) We decided to take up breast cancer, and breast cancer has been tested, the way to handle breast cancer has been tested over the past 40-50 years, so there are models to choose from."

"One of the challenges we face at the Ministry of Health is finding resistence from doctors. Some doctors, they don't even believe in screening mammography. Others are just too lazy -- they say, 'you're coming in and you're bringing more work for me? I don't like that.' You're dealing with different personalities. A lot of people challenge what we're trying to do, but somehow we have to find ways around that. So I want to meet with those doctors. Usually in such centers we try to get the doctors who meet with women of our target group, who are usually in family medicine, or the internists, mainly the specialists, but not the gynecologists, (because the gynocologists here generally see young women in their 20s who are still having babies.)"

"At the ground level, you do find a lot of resistence because, believe it or not, these doctors are overloaded."

"And their argument is valid. At one of the health centers where we installed a mammogram machine, an average doctor sees, per day, over six working hours, sees 60 patients to 70 patients. So that doctos is basically overloaded ... you're taking about 5 to 4 minutes per patient, probably even less. So the doctor comes to me and says, 'how do you expect me to perform a clinical breast examination on a female and then refer her for a mammogram?' (I need to take her information, then perform an exam, which takes minimum 15 minutes.) They make a strong argument, but nonetheless, we need to have to get this rolling."

"We have no national guidelines, so every doctor will do what he thinks is right. If you are young, and you are afraid, and you are scared, and so on, my duty is to reassure you, and everything is okay. But I will reassure you after I have done all the necessary things. What they do is say, "Come on you're young, this is nothing, this is a milk gland, you don't need anything. And they don't do neither an ultrasound or a mammogram. And this poor woman, she was looking for that reassurance, and she flees, and she doesn't come back, and after six, seven months, she has a full-blown something."

"I had a general idea about cancer. No one in my family had ever been through that ... the idea was in my mind. For example, if someone has breast cancer, it should be something very obvious and they can see it easily. Whenever I look at my breasts, they are very good-looking! I thought it was just in the shape! But in the lecture we attended, the doctor said, no, the diagnosis should be in the early stages. If you can see something, it means it is in the late stages and it's dangerous. That was the thing that shocked me -- you might have the tumor and never know it. If it's going to happen, it will happen despite all this (health, family, environment)."

"We are all looking for success -- if I see that this program is successful, why should I keep money away from them?"

"[Arab Women Speak Out is] quite a flexible program, but it helps to build women's empowerment, and get women to have an opportunity to recognize, to some degree, their own worth. We find that it's very much a prerequisite to women's ability to take action regarding their own health. Letting women see how important their own health is to the success of their family, and therefore, empowering them to seek medical care or family planning."

"For any behavior change and process, it is like like, there are dimensions. It's not awareness only. So you start with awareness. Then you need to have policies, you need to have services, so it's a chain ... so awareness won't do much without having the services available."''

"What is the point of awareness if there are no services for diagnosis and treatment?"

"What is needed in Jordan, more than the [mammography] machines themselves, is to have a standard for the quality for mammography. Most equipment is not checked, and most equipment is not ready for mammography. Even the CRs -- not all of them. I think this is a problem, because a lot of them, they have CRs, they have X-rays, but they don't have a standard, because if your machine is not 100% correct, it will give false negative or false positive results ... This is what is needed, more than anything else. Plus, the equipment doesn't work."

My Interview With HRH Princess Dina Mired of Jordan

As I posted earlier, I had the honor of interviewing HRH Princess Dina Mired of Jordan for my JBCP case study.

According to the King Hussein Cancer Center web site:

"HRH Princess Dina Mired has led the King Hussein Cancer Foundation (KHCF) in Jordan as Director General since 2003. Knowing first-hand the difficult experience of cancer when her son was diagnosed with Leukemia at the age of two, this experience was instrumental in both preparing and directing Princess Dina in her efforts to combat cancer."

She is no figurehead -- she is the COO in every sense, in the office 3-4 days a week and involved in every aspect of the organization.

I was impressed by everything about her -- she was so down-to-earth, so warm, and so passionate about her work:



And she asked me about my travel plans:

Jordan Forum for Business and Professional Women

Wednesday was my final day of interviews for my case study research. Eager to give me the opportunity to speak to absolutely everyone who might be helpful, JBCP scheduled me to speak to at least 5 people every day for the last week. By the last day, I was so tired and overwhelmed that I did not expect to enjoy any of the last meetings.

But the first meeting was the one of the most memorable and enjoyable of all. I had the privilige of speaking to Munira Shaban, Executive Director of a chapter of The Jordan Forum for Business and Professional Women. Her location serves the women of an impoverıshed neighborhood on the outskirts of Amman.

From the moment we met ın the

Leaving the JBCP

Earlier this morning, I bid a very emotional farewell to the wonderful JBCP staff members. At least, it was emotional for me. They were so very good to me in every possible way, from arranging my hotel and transport to literally holding my hand when I was in the hospital.

The wonderful JBCP team.

The awesome JBCP car that drove me all over Jordan for interviews.

And they threw me a farewell party with pizza and cupcakes!

King Hussein Cancer Center

Last week, I had the opportunity to tour the impressive King Hussein Cancer Center. Director General Mahmoud Sarhan, who is also the chairman of JBCP's executive board, has built KHCC into a world-class comprehensive cancer care facility.

The name, "King Hussein Cancer Center," itself reflects big changes in Jordanian society. Many people have told me that, until recently, the subject of cancer was a huge taboo. The word itself was rarely spoken -- people called it "that disease" when they spoke of it at all. KHCC used to be called "The Hope Center" for this very reason.

Not long ago, most cancer patients sought treatment in secret, from friends and even family members. Cancer carried a huge social stigma. Many worried that if people knew a member of their family had cancer, no one would want to marry into the family. Again and again, I heard stories of husbands who had divorced their wives upon hearing that they had cancer.

There was little public awareness about the development and treatment of cancer, particularly breast cancer. Women were told by their mothers, grandmothers, and aunts that they could not get breast cancer if they breast-fed their children, or if there was no history of cancer in their families. I met an educated woman, with medical training, who said she had believed that she could not have breast cancer as long as she was in good general health and her breasts looked normal. Apparently, there was a common misconception that having a biopsy for a mass would cause it to metasticize -- that "disrupting it" or trying to treat it was the cause of harm. Many women refused to seek treatment or even a diagnosis, saying that if it was cancer, they didn't want to know about it, and whatever would be would be.

The death of the late King Hussein I from cancer in 1999 had a profound, but mixed impact upon the way the country viewed cancer. It made it easier for Jordanians to acknowledge and discuss cancer, but also seemed to confirm their worst fears. "The King has all the money and resources in the world, and even he dies from cancer -- what hope is there for the rest of us?"

The Jordan Breast Cancer Program, in coordination with their partners, has done a great deal to educate the public about breast cancer, to de-stigmatize the disease, and to motivate people to change their behavior to facilitate early detection and treatment. One of their most important partners is SANAD, a group of cancer survivors who travel throughout the country to counsel and support cancer patients. SANAD volunteers work closely with women, and if possible, their entire families, to educate and support them throughout the treatment process.

HRH Princess Dina

I'm interviewing her tomorrow! I am told that she's very down-to-earth. She's also amazing.

Fourth Day of Work

Today, I interviewed the chief of the Jordan field office of the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA). An estimated 1,827,877 Palestinian refugees live in camps in Jordan, in addition to the population of almost 6 million. UNRWA operates health clinics that are overcrowded and understaffed. They distribute JBCP literature in the camps and train their health workers in JBCP programs. They emphasize breast cancer awareness and self-exam instruction, and make those services a routine part of pre-natal and post-natal care.

Tomorrow, I'm going to observe a training session at a camp in Northern Jordan. Next week, I might get to visit other camps. (My mother has requested that I not tell her about anything scary-sounding until it's over, so I won't say where.) I'm excited to see how breast cancer prevention programs are put into action at the grassroots level, and how impoverished communities leverage their few precious resources to create change.

Third Day of Work

Only three short-ish interviews today. Adding that to yesterday, I have about 7 hours of interviews to transcribe and it's not going to be fun. Still, I am happy and grateful to have a job to do.

All of my interviews have been conducted in English, and I am impressed and humbled by how well people speak English. It's very common for younger Jordanian people, especially the wealthy, to go to school in the West or learn English in school here. I feel like a complete nincompoop and barbarian for only speaking one language. It's mortifying and unacceptable. I need to start learning a useful foreign language, like Arabic, Mandarin, or Spanish. When I have children, I need to emphasize bilingual (or multilingual) education as early as possible.

The people at JBCP continue to spoil me rotten. They've learned that I like Diet Pepsi, and are now keeping it in the office fridge for me. They switched out my cell phone with an even cooler cell phone (same number, for those who have it in case of emergencies). They're helping me arrange trips to other locations around Jordan, and are always recommending fun things for me to do.

It's very odd to be observing an organization as a third-party, and not be involved or in a position to act on any of the things I'm learning. It reminds me of one of my favorite quotes.

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat." ~ Theodore Roosevelt

My assignment here is to be something of a critic, the one who points out how JBCP struggles and where JCBP could have done deeds better. The JBCP employees and partners are in the arena and kicking tushee. The case I'm writing will help JBCP and other organizations improve the work they do in the arena. It's valuable and important -- people in the arena need critics and pointers-out -- but it's reinforcing my overwhelmingly strong preference, and need, to be in the arena in some respect (maybe in my personal or civic life, not my professional life) at some point. Soon.

Second Day at Work

I had a great second day at work. I got to interview four different JBCP stakeholders, all of whom offered very different perspectives on the organization and the state of breast cancer awareness and prevention in Jordan. It touched on so many aspects of my Harvard experience: international health issues, economic development, budgeting, social enterprise, leadership, multi-sector partnerships, corporate philanthropy, and education. I was even more grateful to have had that experiece and to meet so many incredible people with different interests, particularly the Zuckerman Fellows.

One of the most surprising, and heartbreaking, issues was the state of the diagnostic infrastructure. Only the richest private hospitals have state-of-the-art digital mammography machines with diagnostic software that can help detect cancer at the earliest possible stages with high degrees of accuracy. The few public government-run clinics and hospitals that do have mammography machines mostly have analog machines that use old-fashioned film developing processes that produce images of varying, and significantly lower, quality. Each digital machine costs about $500,000 Jordan Dinars, or about $700,000 U.S. Dollars, and the cost of replacing every analog machine in the country, then adding enough to ensure access, is astronomical.

My new friend and JBCP intern, Z, organized a charity banquet that raised enough money ($40,000 Jordan Dinars) to purchase a lower-end analog machine to be used in the Palestinian Territories. It was successfully installed and later destroyed in a bombing raid.

Furthermore, the clinic staff members do not have the proper training required to conduct a complete exam or develop the highest-quality image. Improper use of chemicals produce subpar images that lead to false positive or false negative diagnoses. JBCP is working with a variety of partners to address all of those problems, but there is a staggering amount of work to be done.

Everyone at the office is super-friendly, but I wanted to be sure that I am not just liked, but respected. I made it my early-morning mission to knock the socks off my supervisor with the quality of my work. During our pre-interview briefing, she was surprised by how much research I had done and my grasp of the key roles that each person plays. When we met to discuss my pre-interview notes and questions, she nodded approvingly. When I returned from my interviews, she was smiling warmly.

Tomorrow, I'm taking it up a notch by being even better-prepared and bringing baklava for the staff.

First Day at Work

I had a wonderful and productive first day at the Jordan Breast Cancer Program (JBCP) offices. It was my first time working in a formal office in quite a while, but I really enjoyed it.

Everyone was friendly, helpful, and fluent in English. Several people were trained in the United States: the staff includes a Harvard grad, a Brandeis grad, and an American University sophomore.

The JBCP was started by several organizations, including the King Hussein Cancer Foundation, Jordan's Ministry of Health, and USAID’s Private Sector Project for Women’s Health, to develop and implement a comprehensive nationwide program addressing all aspects of breast cancer detection and education. See an overview here.

One of their major initiatives is a public awareness campaign. They developed their own twist on the traditional pink ribbon symbol for breast cancer awareness, using the traditional Jordanian hatta pattern. Their symbol has been used in other countries as well, and may become used throughout the Middle East.

Breast cancer is by far the most prevalent form of cancer in Jordan, and the majority of cases are diagnosed when the disease is in the later stages and the survival rates are low. The median diagnosis age in Jordan is about 50, far younger than Western countries. Jordanian women have little access to mammography screening services; mammograms are only available for diagnostic tests after symptoms have presented. Furthermore, there is a shortage of mammography equipment and highly-skilled radiologists.

JBCP works with multiple organizations to increase access to mammography services across the country and provide training for health care professionals. They coordinate the donation, purchase, and installation of mammography equipment. They also partner with local organizations who provide community outreach and education about breast cancer and self-exams, going door-to-door where necessary, and coordinate trainings to make those organizations more effective. My research will allow me to study all the different parts of their operations.

Tomorrow, I will conduct the first of many, many, many interviews. I can't wait.

Introduction

My name is Jen. Later this week, I will begin a six-week trip to Jordan, Egypt, Israel, Turkey, Belgium, France, and Bulgaria. I am keeping this blog so friends and family members can follow my adventures.

I will spend the majority of my time in Amman, Jordan. I volunteered to research and write a case about the Komen Global Initiative for Breast Cancer Awareness in Jordan. I am thrilled to have an opportunity to learn about women's health care and education in developing countries, and to learn more about operations and strategies of high-performing nonprofit organizations.

This blog and trip are dedicated to the memory of my grandmother, Sylvia. She fought her own battle with breast cancer with incredible courage, determination, and humility, providing a powerful role model for me and all who knew her. As a world traveler and dedicated volunteer, I hope she would be proud of my summer plans (although I can think of several objections that she would certainly have raised).

I am also inspired by my wonderful father, Stuart. His two successful battles with cancer are a testament to the importance of early detection. Since his diagnosis, he has worked to raise funds for cancer research and education programs. He has also nurtured and supported my love of travel in countless ways, from sharing his Sunday New York Times travel section to providing critical funding and cat-sitting services. I am very, very grateful.