Neither red tape nor Taliban has deterred Noor Rakhshani from working on a vaccine problem in her Pakistani homeland.
Story by Maryalice Yakutchik • Photography by Harry Giglio & Shehzad Noorani
April 10, 2012: Falling Asleep
In her dream, she fastens a band around a baby’s ankle as his mother stands watching.
Noor Sabah Rakhshani wakes. For months, she has been living and breathing her doctoral thesis. Even in her sleep, data from the Pakistan Demographic and Health Survey swirls around her. While commuting to the Bloomberg School, and while preparing meals for her husband Imran and their daughters Lailée and Nida, Noor ponders the variables that influence the use of health services in her homeland.
Only 40 percent of children in Pakistan complete their vaccinations. As a result, preventable diseases like pneumonia, meningitis, whooping cough and measles claim more than 100,000 lives there each year. Yet intriguing factors keep surfacing for Noor: Among children who never received a standard paper card with their immunization history, only half completed the DTP3 vaccine’s 3-shot regimen. However, among children who received all the recommended vaccinations, 90 percent had a paper immunization card.
That last finding has whispered to Noor day and night, relentlessly begging the question: How to design a vaccine reminder—one that wouldn’t get lost or damaged like the standard paper cards so often do—that would bring all children into that 90 percent?
Having worked as a primary care physician in Pakistan, she knows the reminder would need to be both durable and culturally acceptable. Ideally, mothers who can’t read would understand it. Mobile phone-based solutions wouldn’t be helpful because so many of impoverished mothers don’t own one.
In this predawn hour, she recognizes the dream as a Eureka moment. Her gauzy idea of a wearable immunization reminder propels her out of bed and onto the computer in her tiny Baltimore apartment. The first phrase she Googles—time-dependent, temperature-independent indicator—is in deference to her former advisor, Orin Levine, PhD ’94. Before he left the Bloomberg School to head up the Vaccine Delivery program for the Gates Foundation, he had insisted, time and again, that as critical as immunization completion is, timely completion is key. Delays can be risky, even deadly, in the event of outbreaks.
Soon, she’s lost in a white paper detailing the workings of an indicator strip used by the food industry that shows elapsed time after activation. The technology she needs already exists!
Between dream and reality, however, will come nightmarish obstacles: terrorism, a blizzard, banking snags, a fainting epidemic, a cyclone named Nilofar and bureaucratic red tape—more miles of it than separate the Bloomberg School from Noor’s native Balochistan, where infants’ lives depend on their finishing vaccination regimes without delays.
February 1974: The Beginning
Noor, 9 months old, is near death.
Her diarrhea-induced dehydration is so severe that she gasps for breath. The medical staff at the only tertiary care hospital in Quetta, the capital of Balochistan province, predicts she will not survive the night. Her case is not unusual. In 1974 Pakistan, the under-five mortality rate is 166 per 1,000 live births.
By evening, her mother is sent home to spare her from witnessing the death of her only child. Noor’s paternal Uncle-Godfather Mir Quadratullah Jamaldini is among those who keep vigil through the night.
“I survived, mainly because my Kaka [her Godfather] and grandmother did not give up on me,” Noor says. “My Kaka [who died in 2014] loved me dearly.”
Noor’s parents, Saira Jangul and Noorullah Khan, had been very young when their marriage was arranged; her father was in college when she was born May 5, 1973. So she and her mother live in their extended family home with her grandmother and uncles until Noor is 7.
After her father joins the Pakistan Ministry of Foreign Affairs, Noor, her mother and brother travel the world with him. Living in North Korea, Tanzania, Saudi Arabia and Egypt broadens Noor’s views, evolves her thinking.
“Our family is conservative but not narrow-minded,” her father affirms. Preserving the Muslim faith, traditions and Baloch culture is important but so is education. Noor is expected to excel academically. She does.
At 15, she reads an account of shoeless doctors marching across China during its revolution, effecting change in the health of the communities they serve. “I knew then I wanted to pursue a career in medicine,” she says. Much to her parents’ and Kaka’s delight, she chooses to attend medical college. Five years later she is a practicing doctor in Pakistan.
By then, she has wed Mohammad Imran Khan, her mother’s first cousin, also a native of Quetta and trained at the same medical school. Though the marriage was arranged, Noor is “amongst the few privileged girls in my family who had a choice in selecting her spouse.” Instead of the lifelong restrictions and limitations that marriage implies for many women in Pakistan, Noor’s status as wife affords her liberty of movement and decision making. Her husband’s support allows her, as a Fulbright Scholar, to study in the U.S.
“Only after I came to Hopkins in 2007 for an MPH degree did I realize those doctors without shoes were public health professionals,” she says. “I wasn’t looking for something, but I found it anyway at the age of almost 34. My Kaka wanted me to be a successful clinician, but when I decided to go into research he was just as supportive and happy for me. It meant a lot to him that I got my master’s and doctoral degrees from Hopkins.”
May 20, 2012: The Deadline
The timing of Noor’s dream gives her 38 breathless days to meet the deadline for submissions for a Gates Foundation Grand Challenges Explorations grant.
She is in the midst of doctoral studies, and raising two young daughters. Still, she rewrites her concept a dozen times. Technical details change as she delves deeper into researching time-dependent and temperature-independent indicators. She obsesses over her first sentence in an attempt to reach out and grab grant reviewers, if not by their necks then by their ankles—where she has decided her reminder band will be affixed to babies.
“Cellphone reminders,” she writes, “are known to improve vaccination completion rates, but what about children whose mothers don’t have them, or who live in areas without coverage?” Her unorthodox approach for a new kind of vaccine reminder is necessary, she insists, citing studies about the gender gap in cell phone ownership in Pakistan, and reports about the technical difficulties and financial costs of generating cellphone-dependent reminders.
Fall 2012: The Grant
Gates awards Noor and her partner organization, Trust for Vaccines and Immunizations (TVI), an NGO in Karachi, an initial $100,000 to begin testing what it describes as a “bold idea.”
Noor calls design firms in the U.S., South Korea and India, but her relatively paltry budget of $30,000 precludes serious conversations with them. Ferreting out firms that work with philanthropic organizations, she finds Daylight Design in San Francisco and convinces CEO Brett Newman to take on the challenge.
Winter 2013: Red Tape
Convoluted bank policies freeze the transfer of money from TVI in Pakistan to Daylight Design in America. The bureaucratic stall costs months of precious time. In an effort to prevent Daylight’s initial enthusiasm from waning, Noor sends a steady stream of emails reassuring the company that a resolution will be forthcoming.
Also forthcoming: a baby. Noor is expecting her third child.
Before Rehman Tahir—Noor’s point person at TVI and soon-to-be program manager for the upcoming community effectiveness trial of the yet-to-be-designed vaccine reminder anklet—finagles a way around the bank policy, allowing Daylight to receive the funds, Noor’s son Tayyab Mohammad Khan is born.
March 2013 - March 2014: The Design
The Daylight team wrangles with Noor about all of the many “wants” on her list: The band needs to be not only a timely reminder that works in high heat and humidity, but also a durable health record that travels well with nomadic and refugee babies. “Focus on what needs to happen to get a successful outcome,” CEO Newman insists, attempting to rein in Noor. “How much can you pack into this band?” he asks. “Too much, you risk losing focus. Too little, you risk losing value.”
Two prototypes emerge. One is a comfy anklet with a Timestrip indicator manufactured into it. The strip is activated when pinched, releasing red vegetable dye that moves via capillary action along a membrane accurately calibrated to indicate when 6, 10 and 14 weeks have passed, reminding precisely when it is time for subsequent immunizations. The other band, also soft, plastic and waterproof, employs a flashing LED as its reminder/indicator of vaccination milestones.
Noor sends two versions of the anklet along with the community acceptance study protocol and questionnaires to Karachi. A TVI study team visits slums, polling mothers, fathers, aunts and grandparents who swiftly reject the electronic gadget. They are wary of blinking things—suspecting the light-up devices could target them for drone attacks.
Noor dubs the vegetable dye-based anklet the Vaccine Indicator Reminder (VIR). “So much detail has gone into this simple band,” she marvels.
The VIR Band: How It Works
- A Timestrip encased in the band features a tiny blister of red food dye that, when activated, moves along a membrane via capillary action.
- The band, 150 mm long and 19 mm wide, fits comfortably but securely on an infant’s ankle from birth to 18 weeks.
- Each VIR band also contains the vaccine records for each visit. The four groups of vaccines are numbered 1–4 for each visit; every time an infant receives vaccines for the visit, it’s also marked on the VIR band.
- The membrane is surrounded by a paper with three windows cut onto it. The windows are calibrated to indicate intervals of 6, 10 and 14 weeks.
- A one-time button lock prevents the band's accidental removal.
April 2014: The Approval
Noor initiates the process of securing approval from Pakistan’s National Bioethics Committee to conduct a field study testing the band on babies at various community sites where parents take babies for immunizations. Her intent is to begin on August 1 to assess effectiveness of the VIR band.
May 23, 2014: Graduation
June 6, 2014: The Trip
Optimistic that a letter of permission is in the works, Noor leaves Bethesda for Balochistan with three children in tow and a heavy suitcase containing hundreds of VIR bands. They would have languished in customs had she shipped them.
June 8, 2014: The Siege
In the morning, Noor and children land at Karachi’s international airport. That night, militants with guns and grenades attack the airport.
The siege leaves 23 dead.
June 16, 2014: The Panic
Pakistan public health authorities face a torrent of anti-vaccine rumors in the northwest Khyber Pakhtunkhwa province after fainting and deaths among vaccinated children. Pakistan’s Express Tribune reports 36,000 refusals of child vaccinations in just one town—Charsadda. Panic has led parents to refuse all vaccinations, including for hepatitis, tetanus, pneumonia and tuberculosis. Ejaz Khan, national manager for the Expanded Programme on Immunization (EPI), assures the public that the vaccines meet WHO standards. Initial reports show vaccines weren’t to blame for the children’s deaths. Parents are afraid, nonetheless.
June 30, 2014: The Wait
Having decided on four study sites in Karachi, a sprawling city of 18 million, Noor continues to wait for permission from Pakistan’s National Bioethics Committee. Ideally she’d test the VIR band’s effectiveness in rural communities where mothers don’t understand how to read a calendar or have access to electronic media to remind them of dates—remote settings where it’s hard to keep a child’s immunization card secure. Logistics and security issues preclude her working outside of Karachi, however.
Noor expects permission any day, even though everything has come to a standstill for Ramadan, a month of fasting.
August 29, 2014: Still Waiting
Noor learns that a niggling change in the submission format process has led the National Bioethics Committee to delay the review of her request for permission to do a field study. She resubmits following new guidelines, asking for an expedited review. Now, however, Pakistan Medical and Research Council offices are shut down—and will be for weeks—due to a high security alert in Islamabad.
She is running out of time. Her final scientific report detailing the field study needs to get to the Gates Foundation in a few short months—by December.
October 24, 2014: Finally
The National Bioethics Committee issues approval for Noor’s field study to commence. Her team on the ground scrambles to situate themselves at four basic health units (BHUs) in Karachi. In just a few days they will begin enrolling 750 babies in the study. Half will comprise a control group; they will be immunized and given reminder cards, as is customary, when they come in shortly after birth for their first round of vaccines. The remaining 375 will comprise an intervention group; they will be immunized, and then VIR bands attached to their ankles and activated. The team will track all the babies’ immunization progress—or lack thereof—for 18 weeks.
Noor worries: Will the VIR band hold up? She wonders: Who will return, on time, in 6, 10 and 14 weeks to receive critical doses of hepatitis B, polio, pentavalent DTP, pneumococcal conjugate and rotavirus vaccines?
October 28, 2014: The Coincidence—and the Cyclone
The long-awaited and much anticipated official first day of the VIR band community effectiveness trial finally arrives. It coincides, auspiciously enough, with the 100th anniversary of the birthday of Jonas Salk, discoverer and developer of the polio vaccine.
It’s almost as if Salk, deceased since 1995, was somehow speaking to Noor when in 1977 he said, “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality.”
Meanwhile, weather alerts predict that cyclone Nilofar will hit Karachi City. Noor, in Pakistan to oversee the study, hopes that flash flooding will not affect VIR band research activities at the field sites.
November 2, 2014: First Seven
Noor, back with her husband in Bethesda, monitors the field study progress from afar. Staff who immunize babies at BHU in Sachal Goth (a poor settlement in Karachi’s Gulshan Town) report a total of 10 children meeting enrollment criteria during the first week of the trial. Two parents refused the VIR band for their children. One parent left hastily without meeting study staff. Seven are successfully enrolled.
Tents and banners festoon this predominantly Shiite area; loud speakers blare. Noor hopes that newborn turnout here will not go down during Muharram, the first month of the Islamic calendar, despite that public buildings—including vaccination centers—are closed for a week for security reasons. To deter terrorism, even mobile phone servers are shut down on the ninth and tenth of Muharram, declared as state holidays.
November 2014: The Fragmentation
A letter of support for the VIR band study issued by the Expanded Program of Immunization (EPI) to Karachi City District, Department of Health does not ensure Noor’s team hassle-free progress out in the communities. EPI staff operate within basic health units overseen by several tiers of managers. This fragmentation in Pakistan’s health system is not only inefficient, but also leaves ample room for unreasonable and unethical demands to be made.
Middle-tier bureaucrats begin meddling. In an attempt to extract benefits from the study grant, they request that Noor organize a seminar for them at a 5-star, hillside resort. She responds: “Whatever you want from us, we need it in writing.” What she does agree to is letting them conduct monitoring visits of the study sites and processes.
December 16, 2014: A Headline
Taliban Besiege the Army Public School in Peshawar, Pakistan, Leaving 145 Boys Ages 6-18, Dead
January 26, 2015: The Blizzard
Noor dodges apocalyptic snow predicted for the northeastern U.S. as she returns to Pakistan. Her flight takes off from D.C. and, after a stopover in Istanbul, lands in sunny, sweltering Karachi.
The VIR band study enrollment to date is at 155.
February 3, 2015: The Feedback
Some bands are becoming brittle and broken during use. Noor reminds herself and her team that innovations always take time to reach perfection.
Mothers whose babies receive VIR bands are largely uneducated, and the fathers are daily wage earners. When the bands break off, the couples fix them with thread or safety pins; some put them back on the babies, or secure them on the infants’ cots. Their can-do spirit encourages Noor to work on improving the structure of the band.
February 4, 2015: Deadly Attacks
A polio vaccination team is attacked in Noor’s hometown of Quetta. The policeman guarding the team dies and a bystander child is injured. Eleven days later, a polio vaccination team of four men is abducted in Zoab, Balochistan. Their bullet-ridden bodies are found three days later.
Noor’s intervention is not specifically for polio, and is distributed only at EPI centers, not in the context of door-to-door immunization campaigns. Still, she’s wary: “I have to be overcautious for the sake of our field staff. I don’t want to jeopardize their lives.”
February 9, 2015: Major Setback
Noor’s entire study suddenly is at risk, at the whim of one man.
The Karachi City district health officer has ordered her to change her study protocol, despite prior approvals from the National Bioethics Committee and EPI; despite that it’s in accordance with WHO guidelines for vaccination due dates.
Noor fumes but negotiates, offering to narrow her enrollment criteria to infants up to 10 days old and younger. Previously infants less than one month of age were eligible. She is allowed to proceed with the study.
Her concession slows the enrollment process considerably, as most newborn children in Pakistan are born at home and don’t leave it before 10 days of age. Noor is disheartened but not defeated by the glaring dysfunction.
“We are still true to our criteria of enrolling babies less than one month of age. We had to narrow it down to less than 10 days of age. That’s because one guy can come in and throw a wrench in everything. That’s how the health care system works in Pakistan. Its fragmentation is one of the major reasons for the breakdown in the provision of essential services, and our study suffers equally because of this.”
February 26, 2015: Field Notes
The Sachal Goth intervention site boasts the highest enrollment of babies to date. Across all sites, the team has enrolled 344 children, with 200 wearing the VIR band and 144 children in the control group receiving only the routine immunization card.
Parents offer encouraging input as they bring their babies back, on time, for subsequent doses of vaccine.
March 20, 2015: Fresh Data
Preliminary analyses indicate that the Timestrip performance can sometimes be compromised because of trapped water vapors in the plastic pouch in which it is sealed. The manufacturer assures Noor that a new custom-made silicon casing will allow the Timestrip to function as intended in the future.
April 10, 2015: Rave Reviews
Noor and the TVI team receive tremendous support for the VIR band at a meeting in London sponsored by the International Initiative for Impact Evaluation (3ie), a grant-making NGO. Among 18 inventions to improve immunization presented, the VIR band is scored highest for practicality and expected success, and voted “most innovative.”
April 22, 2015: News Story
Progress toward global vaccination targets for 2015 is far off-track, with 1 in 5 children still missing out on routine lifesaving immunizations that could avert 1.5 million deaths each year from preventable diseases. In the lead-up to World Immunization Week 2015 (April 24–30), WHO is calling for renewed efforts to get back on course.
April 10, 2015: Dream Come True
While visiting the field sites and meeting with mothers, Noor just happens to be at Sachal Goth when the first child in the entire VIR band cohort arrives to officially complete all three doses of DTP containing pentavalent vaccine.
The center staff snaps pictures to mark the graduation event while Noor asks the baby’s mother what she thinks of the VIR band.
The soft-spoken young woman answers shyly, not in the national language of Urdu, but in a regional dialect. “You bound us,” she begins in halting praise of Noor: “The VIR band bound us to comply with the vaccination regime.”
Ed. note: Noor and the TVI team stopped enrolling children for the field study on April 30, 2015 and followed the last enrolled child for 18 weeks. They are now preparing final reports. In August, the VIR band project was awarded two grants that will allow simultaneous testing in Pakistan and Nigeria.