first published in Mondoweiss.
In late March and early April 2019 I traveled to Jordan and the West Bank (Palestine) with two colleagues, Sonia Dettman and S. Komarovsky, first to attend the Lancet Palestine Health Alliance conference in Amman and then to explore and better understand the lives of refugees and the workings of UNRWA, with a focus on the status of refugee health.
Home visit #1 Al Azza Camp, Bethlehem
Palestinians in the occupied territories face a challenging and chaotic health care (non-) system with care provided by the Ministry of Health, UNRWA (for refugees), the private sector, and numerous NGOs. There is little cross communication, drug representatives encourage doctors to use the newest and most expensive (though not necessarily better) drugs while the UN provides generic drugs from the WHO essential medications listing. Pharmacies sell medications without prescription and there is little quality control in laboratories. The patients face accessibility and financial challenges, often very short visits (in UNRWA clinics the average doctor visit is 4 minutes), and a bewildering array of choices and bad advice.
In Aida Camp at the Lajee Center, with funding from 1for3.org, Health for Palestine is trying to address some of these issues with an innovative program that trains community health workers, or CHW’s, who identify and follow high-risk patients with diabetes and/or hypertension, the two main causes of morbidity and mortality in Palestine. With physician direction, the CHW’s clarify and monitor patients’ medications and compliance and build on their personal relationships to improve patients’ health.
Today we join Dr. Bram Wispelwey – medical director, Sara Alazza – community health worker, Mahmoud Tayseer – nurse, and Henry Louis – data coordinator, for a home visit in Al Azza Camp. The camp, also called Jabreen Camp, is an “unofficial camp,” a spillover from Aida Camp, where one or two families (one being the Alazza family) squatted on land just across from the Jerusalem/Hebron road, and the rest is history. There is one main road and a maze of narrow muddy streets leading to two to three story apartments, concrete walls with graffiti and peeling political, prisoner, and martyr’s posters. Children tussle and play in the streets, big ones carrying little ones, calling “Hello! Hello!” at the obviously strange visitors.
We stop at the home of a 77-year-old woman who is sitting in her tiny living room with her elderly husband, 38-year-old daughter and two grandchildren. The older girl understands English and is very concerned about keeping her grandmother healthy. The baby is coughing and snuggled against his mother, obviously congested and unhappy. We sit on three couches, the walls are decorated with Palestinian embroidery and a TV. The woman, wearing a loose green dress and a hijab, is obviously overweight and very happy to see the health team. Mahmoud takes blood for a glucose and hemoglobin A1C, a measure of the three month average glucose level.
As we await the results, there is a lively conversation about her insulin. Bram has a warm, engaging manner that embraces the entire family and they clearly love and appreciate him and the entire team. He explains that both sugar tests are elevated but her blood pressure is good. He gives her a choice between changing her insulin dose or adding a metformin pill. After more back and forth, she opts for the pill. Lajee can provide her with a two-month supply from donations. The granddaughter wants to know about diet and Bram suggests decreasing sugar, white rice, and bread. Her blood pressure medicine costs 75 NIS per month (roughly $19) which is difficult for the patient, but she chooses not to change to three different pills which she could get for free from UNRWA. She offers us tea and coffee, the family is engaged and animated and the patient has a warm smile and a twinkle in her eye, glowing from Bram’s attention. Clearly she enjoys all the visitors and is also doing better at controlling her diabetes. Relationships are part of the therapy.
Home visit #2 Al Azza Camp, Bethlehem
The next patient is related to one of the community health workers and is hypertensive and pre-diabetic. We climb up slippery steps in the drizzling rain, potted plants in buckets on each step, to the second floor. Her living room is bigger and everyone is immediately talking and laughing. She has four daughters and two sons and the youngest daughter is a high-spirited trouble maker in school. We chatter about grandchildren and family squabbles. Her glucose testing is good and her blood pressure well controlled. Bram reviews her medications, advises that she stop taking aspirin and changes her dose of metformin. He notices her finger is swollen, she had fallen on the steps to her apartment.
There is more discussion: She has been seen once by a doctor at the Shams UNRWA clinic, but goes monthly for her free medication. The round trip costs 30 NIS which is difficult for the patient. Another member of the team, Neshat Jawabreh, is a nurse and program manager who will communicate with her UNRWA doctor later. Bram explains that he meets with physicians at UNRWA, they understand the limitations of their care and see the project as raising the standard of care. He frames the project as collaborative with UNRWA and knows that patients generally don’t trust UNRWA services. He hopes to partner with UNRWA in the future, to expand the e-health program for better communication. People working on this project also hope to build a successful program that is locally run to encourage UNRWA and local authorities such as the Ministry of Health and other health organizations to take responsibility. “So if we build it, show it works, then UNRWA and the Ministry of Health will come to us.” This is what happened with the water purification program at Lajee that is now maintained by UNRWA. Tea and sesame biscuits arrive with the usual exhortations to eat, eat. There is more discussion with the patient about the data on aspirin use.
Henry explains that he enters data from the community health workers into an app that tracks multiple aspects of the care, the KOBO program that he used previously in a Community Health Worker program in southern Syria. For instance, he knows that the average length of visit is 20 minutes, with a range of five minutes (for a quick medication check) to one hour. Sara, the CHW, says she was educated at Bethlehem University and explains that there is a 50% unemployment rate in the camp. Bram adds that the camp is full of “super smart, educated young people” who do a superb job as CHWs.
The Arabic coffee arrives (with the usual exhortations) and more lively, warm conversation. The Lajee Center gets donations of medications from a Beit Jala pharmaceutical company and local pharmacies. UNRWA medications are free unless they are “stocked out.” Patients have a variety of sometimes erratic sources for drugs, but with this program, medication duplication has been reduced and compliance markedly improved. As I said, relationships are part of the therapy.
Home visits #3 Al Azza Camp, Bethlehem
We meander down narrow winding lanes, “paved” with irregular concrete, and I try to imagine a man with severe chest pain or a woman in active labor hurrying to the hospital, a patient on crutches or in a wheelchair negotiating this impossible place. How close could an ambulance park?
The next patient is 59 years old and surrounded by her daughter and numerous grandchildren and cousins. Bram exclaims, “You look so much younger!” and she smiles happily. The main entertainment is a very active little boy who is fascinated by i-phones, photos, and quickly snuggles into any willing lap for a hot second before he dashes about again. The TV is on without sound, and clothes dry on a large rack in the corner. There is a floor-to-ceiling pile of mattresses against the wall. The woman is overweight, dressed in a long dark abaya, lively and engaged. Her bare toes peek out of the hem of her dress. Her blood pressure is elevated but her glucose is in good control and Bram gives her an energetic thumbs up on the diabetes control. At the beginning of the program, her hemoglobin A1C had been very elevated.
She explains she had chest pressure and a rapid heartbeat and pulls out a plastic bag, dumping a large pile of paper records on the floor. Bram scans through them and pieces together the story: She had symptoms and was seen at a private hospital, the Arab Society Hospital, where she underwent a very first world cardiac workup (including a cardiac catheterization which was negative, alhamdillilah). Ultimately the doctors decided the symptoms were secondary to thyroid disease. The patient says she is taking her medications daily and she wants Sara to come every day. Ironically because she worked at UNRWA, she has private insurance. A young woman brings out a tray of orange juice.
Bram decides to add amlodipine to her blood pressure regime and once he figures out what it is called in Palestine, says that she can get it from Lajee or UNRWA. Sara is clearly totally familiar with each patient and their families, knows their medical histories and is obviously loved. The patient is effusively sharing her fondness for Bram and they are both smiling and beaming warmly together. Again, lots of laughter. The coffee appears and we sip, taking in this ritual of welcoming and feeding.
The daughter tells Bram that the hyperactive little boy was just diagnosed with anemia and he checks his pale lower eyelid. He is getting a workup at UNRWA and Henry agrees to follow up on the testing. As we debate the probabilities of iron deficiency (unlikely) or some variant of beta thalassemia (likely), the patient offers us lunch. Like I said, relationships are everything.
Returning to Aida Camp, we see a young teenage boy walking down an irregular, muddied, hilly street holding a long, red plastic tube, whacking the ground as he goes. It takes a minute for me to realize that he is blind and is using this whacking method in lieu of having a proper white cane. I wonder how he manages to negotiate the buildings with all their stairs and steps between rooms, the debris and trash that is everywhere. Later I google “school for the blind” and find Al Shurooq School in Bethlehem. I wonder if he had the opportunity to study there. I google white walking cane: $12.99 on Amazon. But then again, Amazon doesn’t deliver to the West Bank.
Community Health Worker meeting: “What is the best condition for the sperm to be in?”
Ten community health workers, one man and eight women plus my two colleagues and Bram pull up chairs in the small chilly meeting room at Lajee Center, the overhead heater blasting on and off, for a discussion of women’s issues. The CHWs have been trained on the basics of diabetes and hypertension and the hope is that their knowledge base will gradually expand. My hope is that while they are sipping tea and listening to patients talk about their lives and medical concerns, the CHWs will hear of gynecological complaints and know if and when they should call the doctor.
On the white board I write:
Vaginal bleeding [from puberty to menopause]
Urinary tract symptoms
Sexual issues and pain
The topics trigger a wave of nervous giggling. I ask how much do people know? Are these issues taught in school? Biology class? At home? And heads shake, “La, la, la.” Someone volunteers that they learn everything on the first day of marriage. That seems a little late to me so I take a deep breath and begin.
Teaching about the female body in Palestine is always an astonishing experience as every statement I make tends to generate lengthy discussions, lively arguments, obvious embarrassment, and endless curiosity. The students are always engaged and clearly thirsting for information. I begin to understand each woman’s personal concerns (menstrual cramps were of major interest), the enormous gaps in their understanding, and common beliefs in the culture. I was very impressed at how open the women were despite the presence of several men and the fact that most of the women were not married. When I asked if we should ask the men to leave, they all said no.
Here is a sampling of the questions that came up:
Can showering during your period cause breast cancer?
In our culture we want to get pregnant once we get married. Should we not shower after intercourse?
How long between when the sperm comes out does it take to fertilize the zygote?
Do twins have two eggs and the same sperm?
Why do you bleed after delivery and for how long?
Can you take oral contraceptives to prevent menses during the Hajj?
Can you take hormones to continue menses after menopause?
A question about “fibroid cystic ovaries” that leads to a gyn anatomy lesson and a discussion of ovarian cysts and uterine fibroids.
The most painful and revealing conversation came with the statement: “In our political condition here, men in the prison get their sperm out, illegally, to get to the women. What is the best condition for the sperm to be in?” The room is serious and quiet for the first time. We discuss the basics of sperm donation, but done in conditions which are obviously not optimal, how cold, how warm, how fast the semen needs to be delivered, the challenges when smuggling sperm out of a prison. We review the basics of insemination (they use a syringe). I look at all these eager concerned faces, knowing that a high percentage of men in the camp will spend time in prison, mostly for the crime of living while Palestinian, and try to imagine these men, the marriages interrupted, the yearning for children, and the desperation that leads to this practice.
When we come to sexual concerns, I distribute a list of links to Arabic sexual education, including the Arabic version of Our Bodies Ourselves and a website created by Palestinians in Haifa. The giggling and nervous curiosity spikes as I talk about how important it is to understand sexual relations before that anxious high stakes wedding night, the fact that good relationships involve intimacy and pleasure, that men need to be educated as well as their partners. I am met with some incredulous looks. I urge the CHW’s to explore these websites, talk with each other, and get more comfortable with their own bodies and sexuality. They also need to deal with their own embarrassment in order to work in a professional manner with intimate information they may learn. They are the eyes and ears of the program; women may tell them of symptoms they will not reveal to the male doctor.
I review the importance of knowing what is normal and what is abnormal and stress the issues around menopause and postmenopausal bleeding which they are likely to confront with the overweight diabetic hypertensive women they are seeing.
Bram promises to follow up with CHWs and determine if they are able to translate this basic session into meaningful medical monitoring on topics that are often surrounded by shame and a lack of education. The CHWs collect their pages of notes and prepare to go home. I hope they go directly to their computers…if there is electricity and internet and an iota of privacy, this being Aida Camp.
UNRWA Clinic in Deheisheh Camp: “If you like to work, it is not a problem.”
We walk through bone chilling rain to the Deheisheh Camp and its elegant new UNRWA health center which opened eight months ago, funded by Saudi Arabia. The center is attractive, modern, with an elevator, curving stairs to each level and modern clinical offices, and clean, attractive areas for registration, pharmacy, laboratory, physical therapy, and radiology. It is largely empty, probably because of the discouraging weather.
We meet with a medical officer and a midwife, nurse, and psycho-social clinician. The camp’s population is 17,000 with an additional 2,000 refugees from outside the camp who also attend the clinic. We hear themes that are familiar: the family based health teams, the cooperation within team groups, the use of e-health medical records, the focus on pregnancy and pre- and post-natal care, as well as non-infectious chronic disease (diabetes and hypertension). Each physician sees 70-80 patients per day, with three to four minutes per patient.
The physician is clearly dedicated to his work and has been at Deheisheh for several decades, going from a cramped three to four room clinic to this snazzy new building. He explains that many camps are getting new buildings, including Aida, (which has never had its own clinic) where a boy’s school has been knocked down and a clinic and school are being constructed. Currently patients from Aida are expected to go for UNRWA care in Bethlehem, one kilometer away, as well as Shams Health Centre for Non-communicable Diseases in nearby Deheisheh Camp.
The staff explain that there are no specialists in the clinic so they care for every disease imaginable. Difficult cases get referred to contract hospitals, cancer cases go to the Ministry of Health hospitals; UNRWA provides a year of insurance to patients with cancer. Infertility is not a covered benefit; patients have to pay for private care. No one is referred to Israel and camp residents cannot get permits to go to the high level Palestinian hospitals in East Jerusalem. The physician has been allowed to go to Jerusalem once in the past 20 years. The distance is 20 kilometers by land, but light years in reality. Preconceptual, antenatal, and postnatal care are a priority. UNRWA pays for a percentage of the delivery costs in contracted hospitals.
When the US cut funding, everyone was affected by decreases in budget, services, referrals, and supplies. The clinicians have no knowledge of the intricacies of the funding mechanisms, “Not our business.” Despite the massive stressors, the physician has a warm, engaging, relaxed manner. Like many physicians, he trained in Romania and came home with a Romanian wife. He planned to be a cardiac surgeon, but decided that he needed to serve his people in the camp. “If you like to work, it is not a problem.” During times of crisis (intifada, war, Israeli incursions), he even slept in the clinic. “It’s my people.”
The midwife reminds us that there is a new building, but the services have not improved. She sees patients, organizes community health campaigns, works as part of the health team, but is troubled by the lack of ultrasound and specialists. She sees a patient every seven to ten minutes, but complex visits can last thirty. Most patients get three to four ultrasounds per pregnancy and pay a private doctor 18-100 NIS per scan. 90% of women are seen in the first trimester, 25% come for pre-conceptual care. Women pay for their endocrine tests out of pocket. Like US clinicians, she finds the electronic medical record a blessing and curse, very time-consuming to input data (typing through the visit, loss of eye contact), but excellent for retrieving information and tracking data.
The woman who deals with psychosocial issues sees cases from bedwetting or aggressive behavior in children to women unable to accept a pregnancy to people struggling with chronic disease to domestic violence. Interestingly, because of the stigma about mental health and disease, her visits are framed as “routine,” she is part of the health team and carefully not defined as a therapist.
Other challenges include patients “shopping” for the care they want, (UNRWA, Ministry of Health, NGOs, private care), patients complaining about the quality of free care at UNRWA (they reportedly don’t complain about private care), the inability of patients to get permits to East Jerusalem for high level care, the increasing shortages of medication, the bureaucracy, (non-emergency cases like hernia repair are not covered by UNRWA), and inadequate choice of free medications. On the other hand, there is a more rational use of antibiotics (drug resistant infections are a growing problem in the OPT), UNRWA now offers eye exams for diabetic retinopathy, high risk pregnancies are referred quickly and efficiently.