Dozens of white tents stand outside Türkiye’s Gaziantep train station housing Turks and Syrian refugees, shortly after the February 6 2023 earthquake.

One year after a 7.8 magnitude earthquake wracked Türkiye and Syria, some 690,000 people  remain displaced in southern Türkiye, out of the 3 million people that initially lost their homes  when the natural disaster hit in the early morning of 6 February 2023.   

Another 40,000 Syrians remain internally displaced mainly in the northern region of the country.  

At the same time, the number of Syrians requiring humanitarian assistance has increased from 15.3 to 16.7 million people as the challenges of internal displacement related to years of civil war, food insecurity, and economic crises compound disaster recovery. 

“Thousands are still homeless and vulnerable,” said Shabina Mantoo, a spokesperson for the United Nations High Commission on Refugees (UNHCR). And 40,000 [Syrians] still reside in temporary facilities,” she said, speaking at a Geneva press conference earlier this week where UN agencies renewed their appeals for donors to support earthquake reconstruction.  

The earthquake that struck southern Türkiye and northwestern Syria, killed 59,000 people as well as causing widespread damage to infrastructure. A series of aftershocks as well as freezing temperatures further complicated rescue efforts for the tens of thousands injured. 

The disaster was one the region’s deadliest in recent times, with years of civil war and conflict compounding Syria’s efforts to recover.  Turkiye, meanwhile, continues to host 3.7 million Syrian refugees from years of civil war, compounding its own efforts to recover as well, said Mantoo.  

A family from Lattakia in northwestern Syria, stands near their destroyed house shortly after a devastating earthquake hit their city on Feb. 6, 2023

Aid to Syria dwindles

In the weeks immediately following the disaster, United Nations agencies raised some $387 million in pledges for basic humanitarian and health supplies, as well as reconstruction of some 48 damaged healthcare facilities in northwestern Syria. 

But in the months that have since followed, global attention and funding has shifted to other conflict zones and areas, such as the civil war raging in Sudan and Israel’s war with Hamas in Gaza.  

While Türkiye’s government has undertaken programs of national reconstruction, recently unveiling rebuilt homes and medical buildings in the earthquake’s epicenter of Kahramanmaraş province, much of Syria’s displaced population continues to reside in temporary camps, supported by international aid agencies and donors.

“We don’t have funding to even think of going into larger scale rehabilitation and reconstruction,” said Mads Brinch Hansen, head of the International Federation of the Red Cross delegation to Syria, speaking at the Geneva press conference. 

United Nations High Commissioner for Refugees spokesperson Shabina Mantoo at a UN press conference in Geneva on the one-year anniversary of the earthquake.

WHO appeal for emergency funding

Last month, WHO issued a flash appeal for another $1.5 billion in aid to nearly a dozen Grade 3 humanitarian emergencies raging in the Eastern Mediterranean Region and Africa, including for $80 million for Syria. 

On Tuesday, the global health agency warned that funding shortages could threaten WHO’s work in northwest Syria, potentially disrupting direct health aid to two million people. 

“On 6 February, it will be one year since a series of devastating earthquakes hit southern Türkiye and northern Syria, killing 50 000 people in Türkiye and 5900 in Syria. Tens of thousands more people were injured, and thousands of homes and public buildings, including hospitals, were damaged or destroyed.  This was one of the biggest disasters in the region in recent times,” the agency noted. 

“In Syria, the earthquakes hit communities that had already been deeply affected during the 13-year long conflict-driven crisis.” 

WHO underlined the role the agency is still playing in supporting Syria’s recovery, including: delivery of health supplies; strengthening disease surveillance and outbreak response; and addressing the mental health and psychosocial needs of the affected populations. 

Image Credits: Abdulsalam Jarroud/TNH, @UNICEF/UN0779766/Belal.

Activists protesting against medicine patents

 Evergreening patents on medical products – extending the lifespan of patents that are about to expire – is an “abuse of the intellectual property system”, an HIV activist told the World Health Organization’s (WHO) Fair Pricing Forum on Thursday.

Meanwhile, an industry representative laid out her company’s value-based, country-specific approach to improving access to medicines, providing an example of how it had improved access to cancer medicine in Nigeria.

Ukraine-based Sergiy Kondratyuk, who works for the International Treatment Preparedness Coalition, said that evergreening is pervasive and a barrier to lower medicine prices.

“In Thailand, about 70-80% of drug patents are evergreened … and approximately 45% were evergreened Ukraine,” said Kondratyuk.

He urged people to oppose this practice – using a technical “patent opposition” process. This was used successfully in India after an international campaign resulted in the Indian Patent Office declining Johnson & Johnson’s application to prolong its patent for the TB drug, bedaquiline, which it had held for eight years.

“After that J&J started very active negotiations on voluntary licence and on eventually announced non-law enforcement of all evergreening patents on bedaquiline in almost all low and middle income countries, so this was an important result,” said Kondratyuk.

Earlier in the forum, Adrian van den Hoven, chair of the International Generic and Biosimilar Medicines Association (IGBA), which aims to foster market access for generic medicines, said that the evergreening of patent agreements “artificially stretches monopolies and harms access to medicines”.

Value-based approach to medicine pricing

Roche vice-president Tamara Schudel told the forum that her company recognised that “our medicines are only effective if they can reach the patients who need them. 

“This is why we’re constantly looking for ways to support patient access in low and middle income countries in particular,” she added.

“We take a value-based approach that reflects the benefits the medicine delivers to the patients, their families, the health care systems and society as a whole,” said Schudel. “Then we look at the context of the health care system in which we’re operating.”

Roche also uses tiered pricing where it charges lower prices in low income countries than in higher income countries. 

“We also recognise that there are unique health care needs and affordability challenges in low and middle income countries,” she added.“We have found that by working closely with the local payers and governments and health systems, we can find flexible and tailored solutions that can effectively address the broader health care and economic barriers that stand in the way of access.”

She gave the example of Roche’s work in Nigeria.“In Nigeria in 2020 there were approximately 125,000 new cases of cancer. Since fewer than 10% of Nigerians were insured, there was a significant delay in seeking cancer care due to the fear of additional financial burden.

There was also no health insurance coverage for innovative cancer medicines, which created additional significant access barriers. 

Screening for breast cancer in Nigeria

“We worked with the National Health Insurance Authority and the government to enter into a memorandum of understanding for a new insurance model. While this cost-sharing model has just recently started, there’s already been an impact with more people presenting for screening and treatment earlier,” said Schudel.

“With cancer, the earlier you catch it, the better the outcomes and the farther your investment goes. So this will serve better outcomes not only for patients, but the community more broadly.”

She described Roche’s “collaborative approach to overcome country-specific barriers to access, and working together to create conditions to support differential pricing and implementation of innovative access pricing and payment models tailored to the unique socioeconomic conditions and health care needs of the country” is the best route to support greater affordability and improved access. 

“We welcome solution-oriented dialogues between industry, WHO member states, and health care system stakeholders,” she concluded.

Roche vice president Tamara Schudel (bottom right) told the Fair Pricing Forum about her company’s work with cancer patients in Nigeria.

Intellectual property for public good

Mustaqeem de Gama, director of legal international trade at Afrigen, the South African company that is running the WHO mRNA hub, said that intellectual property (IP) policies should aim to improve public health.

“These are private rights which should be subject to public rights with health as a public good,” said De Gama. “The pendulum has swayed too much the one way, with private rights holding sway over public concerns.

The system needs to change to ensure appropriate tech transfer, know-how and finances to safeguard health – particularly in a pandemic, he added.

“That is why there is a review of the International Health Regulations and a pandemic treaty negotiations. There has to be democracy in how decisions are made.”

Industry needs incentives to share patented products

Charles Gore, executive director of the Medicines Patent Pool (MPP), spoke earlier at the forum about the need to make a business proposition for companies to share their innovative products. The MPP encourages companies to issue voluntary licences for medical products to “increase access to and facilitate the development of life-saving medicines for low- and middle-income countries”.

Medigen Vaccine Biologics was the only commercial company to share its COVID-19 vaccine with the World Health Organization’s (WHO) – but only in 2023.

COVID-19 Technology Access Pool (C-TAP). C-TAP was established to encourage the developers of COVID-19 therapeutics, diagnostics and vaccines to share their intellectual property, knowledge, and data with quality-assured manufacturers through “public health-driven, transparent, voluntary, non-exclusive and transparent licences”.

“If the neighbourhood is on fire, you try to stop the fire at your own house before you start helping others. But if you don’t help others, the fire might jump back into your house,” says Paul Fure Torkehagen, the company’s vice-president.

“We were selected to be part of Solidarity trials, and made a promise to have affordable and equitable access to our vaccine. We were also funded by Sanofi in a co-sponsored clinical study so we made promises in that regard,” he explains.

But the C-TAP experience has its advantages for innovation. Under usual circumstances, a company can only draw on its internal resources for innovation, but with an open innovation platform, “you can leverage both internal and external ideas and technology bases”,  and “leverage external collaborators but also open up alternative markets”, said Torkehagen.

“In the next pandemic, we might not have the technology and so we have to lead by example in hopes that, in the future pandemic, we can obtain technology from others.”

Nonetheless, Torkehagen says that there have to be commercial opportunities to incentivise companies to share their innovations.

He also warned policy-makers that when they insert themselves between the holder of patents and the receiver of this – as the WHO did in C-TAP – “you want to incentivise and increase the efficiency and speed at which the technology goes to the receiver, not create barriers in that process”.

Image Credits: Roche.

Global access to medicine is being hampered by secrecy in procurement, argue civil society groups

Over 50 civil society groups have written to the leaders of the world’s biggest medicine procurement programmes urging them to reject “secrecy clauses” in their agreements with pharmaceutical companies. 

The letter, which has been shared exclusively with Health Policy Watch, was sent to the heads of UNICEF, the Pan American Health Organization (PAHO), vaccine alliance Gavi, The Global Fund to Fights AIDS, Tuberculosis and Malaria and the US President’s Emergency Plan for AIDS Relief (PEPFAR) on Tuesday.

The civil society groups, which include the People’s Vaccine Alliance, Public Citizen, Health GAP and a multitude of local patient advocacy groups, express “deep concern about the increasing use of confidentiality and non-disclosure clauses” in contracts between drug manufacturers and government, multi-stakeholder and humanitarian buyers.

They appeal to the big five procurement agencies to use their buying power to reject secrecy clauses that are hindering “equitable access to essential medicines by making it harder to establish fair terms, reasonable prices, and timely supply”. 

In 2021, the United Nations system alone spent $10.6 billion on medical products.

UNICEF’s global supply hub in Copenhagen ships vaccines and medical products worldwide.

COVID-19 stoked secrecy

“Secrecy imposed by private industry across the entire value chain of medical products became the norm during the COVID-19 pandemic. There was secrecy with respect to many publicly funded R&D agreements and an absence of terms and conditions requiring transparency of research outcomes and conditions on commercialization,” they write.

Companies claim “trade secret protection” in relation to a range of issues including public investments and incentives in the research and development of new drugs; prices and pricing policy; procurement agreements and supply commitments. 

“Regrettably, PEPFAR has recently sidestepped transparency obligations by allowing its contracted bio-pharmaceutical distributor, Chemonics, to sign a non-disclosure agreement with ViiV,” the letter notes.

Contract transparency is a key issue in the current pandemic accord negotiations, and the current draft negotiating text includes transparency as a core principle, but does not include any legally binding provisions.

Activists in Spain and Colombia have taken legal action to establish “the principle that drug prices are not protected trade secrets”, according to the letter.

Meanwhile the Health Justice Initiative in South Africa secured a court order compelling the government to make full disclosure of its procurement agreements with Johnson & Johnson, Pfizer, Serum Institute, and Gavi’s COVAX program during the COVID-19 pandemic.

It emerged that Johnson & Johnson (J&J) and the Serum Institute of India (SII) charged the South African government more than the European Union for COVID-19 vaccines – and South Africa assumed all the risk in ‘take-it-or-leave-it’ contracts with Pfizer, J&J and SII. 

Lack of transparency enables corruption

Fair Pricing Forum plenary on transparency.

Interestingly, at the World Health Organization’s (WHO) Fair Pricing Forum on Wednesday ,South Africa’s Deputy Director General of Health, Dr Anban Pillay, said that pharmaceutical companies had taken advantage of COVID-19 to secure high prices for vaccines from his government.

Addressing the morning plenary on drug price transparency, Pillay also paid tribute to civil society organisations for their advocacy on access to affordable medicines.

Meanwhile, Dr Yupadee Sirisinsuk, Thailand’s Deputy Secretary-General of Health Security, called for international regulations to make sharing of medicine prices compulsory.

Billy Mweetwa, former Director General of the Zambia Medicines and Medical Supplies Agency, told the plenary that the lack of transparency in medicine procurement weakened governments’ negotiating power as they “have no price benchmarks”, and could also lead to corruption in the negotiations.

Sabine Vogler, head of the pharmacoeconomics at the Austrian National Public Health Institute, described payers as entering negotiations “blindfolded” as they had no idea what others were paying. 

New transparency policies 

Charles Gore, executive director of the Medicines Patent Pool, said that where governments provided public funds for R&D, there were often clauses related to product access “but governments then don’t actually enforce them”. 

“COVID really highlighted the lack of enforcement of access rights,” said Gore.

International agencies could be “important advocates” of pooled procurement to drive down costs, he added.

However, the civil society groups want far more in their letter to the “Big Five”.

“We believe it is time for the largest procurers of medical products, including UNICEF, PAHO, Global Fund, PEPFAR and Gavi, to act individually to adopt new transparency policies and collectively to support the adoption and enforcement of a new common standard that rejects secrecy, and that supports more robust, accessible reporting of procurement contract terms and agreements,” they argue.

“Similarly, governments should reject coercive non-disclosure agreements, and simultaneously they should clarify or modify their freedom of information and drug procurement laws to ensure that supply, price, and distribution terms are publicly available,” they conclude, saying that they were ready to engage on the issue with the agencies.

‘Unintended consequences’ of transparency

However, Richard Torbett, head of the Association of the British Pharmaceutical Industry, said that “sometimes the sharing of information is really helpful and sometimes the sharing of information can have some unintended consequences”.

Industry needs incentives to create the best medical products for patients, said Torbett.

“Pharmaceutical prices need to be scrutinised, but I’m much happier about pharma companies being scrutinised on clinical data on how well their products work for patients, rather than an accounting debate about how to portion R&D costs,” he added.

Torbett said that while transparency was important, particularly in regard to “multi-source products, where that transparency can drive better competition, lower prices, and I would hope that translates into better access around the world”.

But he was sceptical that price transparency about new medicines would drive prices down: “It’s not that the industry is against transparency for the sake of it. It’s a real sense that, through international reference pricing and some of the consequences of that, there is a belief that transparency of net prices could lead to price convergence, and that price convergence ultimately is likely to be detrimental to the poorest countries in the world.”

Torbett also noted that “countries want to strengthen their negotiating position by understanding the prices charged elsewhere. I’d be very interested to know whether some of those countries would be willing to share their own prices.”

Frustration at being disempowered

Concluding the forum’s plenary on transparency, Dr Suerie Moon, co-director of the Global Health Centre at the Geneva Graduate Institute, said she sensed “frustration in the room” was disheartened about the “circular discussion” from one forum to the next.

“On the part of payers, there is frustration at being disempowered by information asymmetry and a strong desire to have more transparency, not only in order to negotiate fair prices, but also to be more accountable to the public and to address the risk of corruption,” said Moon.

Countries had also felt frustrated when trying to act alone, said Moon.

“There’s a very strong role for international cooperation and coordination, whether that is through information sharing, joint negotiations, training or pooled procurement.”

Image Credits: Jernej Furman/Flickr, Prachatai.

The high price of medicines in many high- and middle-income countries and ensuring medical supply chains during crises were  some of the issues discussed at the Fair Pricing Forum, which opened on Monday.

The three-day forum, hosted by the World Health Organization’s (WHO), brings member states and stakeholders together to  discuss how to ensure “optimal access to affordable health products”.

Judit Rius Sanjuan, director of the Pan-American Health Organization’s (PAHO) access to medicines department, told the opening plenary that the problem of access to medicines seems to be of “system design and therefore correctable”.

COVID-19 had a “devastating impact” on Latin America and the Caribbean, said Sanjuan.“Even though it is just 8.4% of the world’s population, it accounted for over 20% of global infections and 32% of deaths.”

The lack of equitable access to vaccines, shortages and overall lack of access to other medical tools including diagnostics and personal protective equipment (PPE), contributed to these statistics.

“The region is experiencing an epidemic of lack of access to high-cost technologies, or as we may dare to say, high-priced technologies,” said Sanjuan.

Judit Rius Sanjuan, director of the Pan-American Health Organization’s (PAHO) access to medicines department.

“The annual growth in pharmaceutical spending in Latin America and the Caribbean is 12% – four times more than in North America and six times the rate of Europe,” she said, adding that a recent study showed that some Latin American countries paid more for cancer drugs than many European countries.

Eight countries – Argentina, Brazil, Chile, Colombia, Dominican Republic, Ecuador, Uruguay and Venezuela – spend $3.2 billion every year on biological products including monoclonal antibodies.

In addition, over 1000 products in the US – also part of PAHO – had above inflation price increases in 2021, with the average increase being 31%.

Litigation as path to medicine access

“Due to the high cost of medicines, litigation has become a common pathway [for patients] to get access. In no other region is this trend as strong as in Latin America and the Caribbean. In just a decade, the number of health access litigation cases increased by 130% in Brazil and 119% in Colombia,” said Sanjuan.

“Most Latin American countries have to self-finance because they are not eligible for global financing. The current criteria for access and the pricing structure do not correspond with the needs of the region, where most countries are middle-income countries and some are high-income.”

For example, she said, hepatitis treatment costs $3000 in some countries in the region while the same treatment costs $200 in low-income countries.

“We shouldn’t punish economic development and progress with higher prices, especially as we are hurting, not only the health system, but the population in need. On average, households spend 34% of medical spending on medicines and out-of-pocket spending can be up to 60% in some countries, with the poorest people spending the biggest proportion of income on medicine.”

PAHO’s response to high prices include pooled procurement, increased regional production especially of high price technologies and expanded investment in vaccine and medicine research an development (R&D), Sanjuan concluded.

Antiretroviral price cut show what can be done

Meanwhile, Ellen ‘t Hoen, director of Medicines Law and Policy in the Netherlands, used the reduction in the price of antiretroviral (ARV) medicine for HIV treatment as an example of what could be done to bring down prices.

Initially costing $10-$15,000 per year although their production cost was “modest”, prices fell by 90% in the early 2000s once generic manufacturers entered the market, said ‘t Hoen.

“The following elements made this happen and I want to list those because they’re still very relevant today,” she added.

“First of all, the HIV medicines were added to the WHO Essential Medicines List despite their price. WHO pre-qualification was established and assured quality and the confidence in the [generic] products. As of 2003 , funding became available from the Global Fund, PEPFAR, other sources such as Unitaid,” said ‘t Hoen.

Additional factors include “extensive use of TRIPS flexibilities” after the World Trade Organisation adopted the Doha Declaration on TRIPS and public health in 2001. 

“And finally, there was transparency. The prices paid for these antiretroviral drugs were collected and made public almost in real time. As a result today, the Global Fund procures the three-in-one fixed dose combination for HIV treatment for under $40 per year.”

The high cost of cancer medicine, and the Medicines Patent Pool’s inability to secure licensing opportunities for oncology products – bar on one drug that was about to expire – “has to change”, she added.

“High medicines prices are sustained through monopolies, which are granted through both the patent system and the medicines regulatory system. Without addressing monopolies in medicine supply, it will remain difficult to reach fair pricing levels, in particular for newer medicines,” concluded ‘t Hoen, adding that it was unclear whether countries would address barriers before the next pandemic.

Voluntary licensing

However, Thomas Cueni, Director General of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), said that the best way to secure better access to medicines was via voluntary licensing agreements.

He added that the IFPMA supported more geographic diversity in manufacturing and wanted to have proposals in their Berlin Declaration embodied in the pandemic accord currently being negotiated at the WHO.

Adrian van den Hoven, chair of the International Generic and Biosimilar Medicines Association (IGBA), which aims to foster market access for generic medicines, said that the evergreening of patent agreements artificially stretches monopolies and harms access to medicines.

The negative impact of IP ‘evergreening’.

His association provides 70-90% of all prescription medication worldwide, said Van den Hoven. 

Key barriers to global access were related to regulation, intellectual property rules and sustainable off-patent markets to prevent medicine shortages.

Ensuring medicine in crises

Sierra Leone’s Deputy Minister of Health, Dr Charles Senessie, said that his country had to apply “out of the box thinking” to safeguard its medical supply chain during both conflict and health emergencies, such as the Ebola outbreak.

“We have developed a mobile app to monitor the supply chain even when there is no power,” said Senessie. “We also have protocols in place to ensure that services keep running in conflicts.”

Sierra Leone has turned to solar energy to power health facilities and is using hybrid vehicles to save fuel.

The Fair Pricing Forum ends on Thursday.

Dr Charles Senessie, deputy health minister of Sierra Leone.
Amit Levy, brother of 19 year-old Israeli hostage Naama Levy and Shay Dickman, cousin of Israeli hostage Carmel Gat, visit the experiential display of a “hostage tunnel”, in Geneva’s Place des Nations on Monday.

Shay Dickmann stood stoically as the recorded screams of a woman pierced the darkness of the sealed metal container, followed by shouting and screams, the sounds of gunshots and a baby crying. 

A narrow tunnel led to a tiny room with a single lightbulb and a dirty mattress on the floor. On the wall, a projector played through the before and after images of Israeli women kidnapped to Gaza during the Hamas-led incursion into Israeli communities near the enclave on 7 October. There were photos of the women smiling, at home and at ease before “Black Saturday,” and frames of the same women culled from Hamas video posts of their capture or captivity, their faces bloodied, fearful, and wane. 

“I think I heard the voices of the terrorists who took away my aunt and killed her, in the tape they were playing,” Dickmann said after emerging from the mock hostage “tunnel”  back into the bright winter sunlight of Geneva’s Place des Nations. 

Dickmann, along with the Israeli families of 10 other Israeli hostage women were in Geneva Monday and Tuesday for a series of meetings with World Health Organization and other UN agency officials, as well as a session at UN headquarters with representatives from some 35 countries interested in hearing their stories. 

A handful of diplomats, including US Permanent Representative to the Human Rights Council Michèle Taylor also visited the tunnel display,  which offers just a five-minute glimpse of what the 100 or more hostages still in captivity have been going through for 122 days.  

Shay holds up photos of her cousin and Israeli hostage Carmel Gat, 39, on the right, and her aunt, 67-year-old Kinneret Gat, being led away from her home by Hamas gunman – she was later shot to death on the sidewalk.

Dickmann’s 67-year-old aunt, Kinneret Gat, was killed by gunmen just outside of the family’s home on Kibbutz Be’eri on the morning of 7 October  as Hamas-led forces invaded nearly two dozen Israeli communities close to the Gaza border in a surprise attack early on a holiday morning.  

Shortly after killing Kinneret, the Hamas gunmen returned to the house and took her  39-year-old daughter, Carmel Gat, hostage. Some time later, Carmel’s brother, Alon, his wife Yarden, and their 3-year-old daughter Geffen were captured from a hiding place, after the family’s ‘safe room’ began filling up with smoke from grenades and nearby house fires; they were placed in a Hamas vehicle bound for Gaza.  

Alon managed to break away and escape with the toddler after an Israeli tank crossed the path of their kidnappers’ vehicle, creating a brief window of opportunity for the family to leap out of the car. 

Yarden Roman-Gat was chased down and recaptured, but then released on 29 November as part of an week-long cease-fire and hostage exchange deal between Israel and Hamas, brokered by Qatar.  That deal saw the release of about 110 hostages, of the estimated 240 originally taken captive by Hamas on the 7 October incursion, in which some 1,200 Israelis, mostly civilians, also were killed.  

The fragile cease-fire and hostage exchange deal broke down just a day before Carmel Gat, an occupational therapist was supposed to have been released as well, Dickmann recalled.

Instead, Carmel continues to be held in Gaza. She remains there along with another 14 women presumed to be alive – although time is running out, the families warn. 

In Geneva pleading for the release of female hostages

Simona Steinbacher, mother of 30 year-old hostage Doron Steinbacher, in front of Geneva’s UN headquarters. Doron has a “serious medical problem” that requires daily medication, but she said she has no idea if Doron is receiving treatment.

“We heard the first sign of life from Carmel from two other hostages who were released in November,” Dickmann told a briefing of diplomats at the UN’s headquarters in Geneva on Monday at the start of their two-day mission.   

“For more than 50 days we didn’t know if she is dead or alive, as there was no footage of her released on social media,” she added. 

 “Then, after 50 days, two hostages that were released told us that Carmel was kidnapped with them and that she was the one to keep their spirits up throughout the difficult times. They said that Carmel managed to find her inner strengths and practiced yoga with them.

“Now, since then, for two months, we haven’t heard anything again.”

Speaking to diplomats from some 35 national missions during a meeting at Geneva’s UN Headquarters, Dickmann and other hostage family members described their fears for their cousins, daughters and sisters – some as young as 19, and including women who sustained injuries on 7 October and others who have chronic medical needs.  

Naama Levy, one young female hostage portrayed in a Telegram video with her hands tied and her pants bottom covered in blood as she was being taken prisoner; she suffered leg wounds, apparently from sharpnel. When she was last seen in a tunnel two months ago by another Israeli hostage, since released, the leg was still swollen and disfigured.  She walked with difficulty.

“We know [from released hostages testimony] that she wasn’t treated for the injuries, even two months later,” said her aunt, Orit Mansur Levy, who was in Geneva to represent her in the meetings.  

Simona Steinbacher, mother of 30-year-old Doron Steinbacher, told diplomats that her daughter has a “serious medical problem that requires medication daily – but no one gives her the medicine.” 

On 26 January a video depicting Doron and two others female hostages was released by Hamas. “You can  see how pale and thin she looks,” said her mother, displaying a frame from the video of her daughter in captivity.

Among the 136 hostages still held in Gaza, as many as 32 are now believed to have died. Those surviving include an estimated 14 women and 88 men. Along with the women, a number of the men are elderly, ill and in desperate need of life-saving healthcare. In mid-January, a Qatar-brokered deal was supposed to insure deliveries of medicine to the hostages in exchange for Israeli agreement to step up humanitarian aid to beleaguered Palestinian hospitals in northern Gaza. Weeks later, however, there is no confirmation from Hamas that the medications were ever received or administered.  

Families aim to raise the profile of vulnerable women still held as hostages  

Videos of Israel’s female hostages held in Gaza run in a loop inside the hostage tunnel. On the right is Karina Ariev as she was hauled away in a truck after being captured by Hamas-led forces on October 7.

The meetings in Geneva included sessions with Volker Türk, UN High Commissioner for Human Rights; Mike Ryan, WHO Executive Director of Health Emergencies; and Mirjana Spoljaric Egger, President of the International Committee of the Red Cross. 

It was the first large-scale visit by hostage families to the UN and WHO headquarters in Geneva since the collapse of the first November cease-fire.

Although WHO and UN officials have repeatedly issued calls for the release of the hostages in their official statements, Gaza’s expanding humanitarian crisis, in which more than 27,000 Palestinians have been killed, has been the overwhelming focus of UN statements and relief efforts. Horrific stories of Palestinian women and children trapped in by bombings, evacuation orders and Israeli-Hamas crossfire have surged through the global media as Israel faced allegations of genocide in the International Court of Justice. 

Against that wave, the Israeli families of hostages feel that their appeals for more forceful humanitarian intervention, including women who are particularly vulnerable in captivity, have been largely pushed aside. 

Ashley Waxman Bakshi, cousin of 19 year-old Agam Berger, an Israeli hostage in Gaza – the UN should address the humanitarian crises of the Israeli hostages as well as that of Gaza civilians.

 “It should be spoken about, the humanitarian crisis in Gaza. But it should be done so alongside the humanitarian crisis of the hostages,” said Ashley Waxman Bakshi, cousin of 20-year-old hostage Agam Berger, whose capture by Hamas was documented in a Telegram video on 7 October, where she was seen being led away to a vehicle while still in her pajamas. 

“I think it’s important to say that as an Israeli, I find it tragic when I see innocent Palestinians suffering,” declared Waxman Bakshi.

“There’s no balance when you look at the numbers, but you have to look at the balance in humanity, and Israel didn’t start this war,” Waxman Bakshi asserted. “The war started with October 7 and the massacre and the taking of the hostages.  And so I just ask for balance – to see the humanity on both sides. ”  

That’s a contention that is hotly disputed by many Palestinians, who say that Israel blockaded Gaza for nearly 20 years before Hamas launched its war. Israelis, on the other hand, contend that Hamas managed to muster millions of dollars in resources to transform the enclave into a military fortress, rather than investing in human development. 

“My daughter  is a symbol of the innocent lives taken,” declared Amanda Damari, mother of Emily Damari, a 27-year-old British-Israeli kindergarten teacher from kibbutz Kfar Aza, near the Gaza border. “She’s being held in tunnels built with milions of dollars of aid donated for humanitarian causes, tunnels built under UNRWA schools and hospitals. Everyday that passes, her life is more in danger.”

 ‘The citizens of the kibbutzim are peaceable people’

WHO Health Emergencies executive director Mike Ryan meets in Geneva on Tuesday with family members of Israeli hostages still held in Gaza by Hamas.

Paradoxically, the Gaza-area Israeli communities that suffered the brunt of the Hamas attack on 7 October were known for their liberal and even left-wing views.

Some of the same kibbutz members who were murdered or taken hostage spent considerable spare time in peace movement activities, including ferrying sick Palestinian children to Israeli hospitals for treatment that they couldn’t obtain in Gaza.  While the Israelis display solidarity abroad, at home, many of the hostage families have also been highly critical of Israel’s hard-right government for failing to push aggressively enough towards a  hostage exchange deal – even one involving major concessions.  

“Türk empathized with our stories,” reported Dickmann, after the meeting with the UN High Commissioner later Monday evening. “He declared Hamas actions on October 7 as war crimes, and condemned them saying they are unacceptable. 

“Knowing that the citizens of the kibbutzim were peaceful people, he shared his wish that we won’t lose the hope for living Israelis and Palestinians in peace on the day after,” she said, adding that he had also affirmed that any cease-fire in Gaza should be “conditioned” on the hostages’ release.  

Ryan also described the events of 7 October as “a war crime and every day they are held there a war crime is still going on,” related Dickmann, saying he promised to stress the need for the hostages’ access to medical care. 

“He said WHO is looking after the lives and the health of every human being who is vulnerable, both Palestinian and Israeli.” 

UN Special Envoy for Sexual Violence concludes visit to Israel

The visit of the hostage delegation to Geneva also coincides with rising concerns about sexual violence to which female Israeli hostages may have been subjected while in captivity. On Monday, the UN Envoy for Sexual Violence, Pramila Patten concluded a week-long mission to Israel and the occupied West Bank, “to gather information on sexual violence reportedly committed in the context of the attacks of 7 October 2023 and their aftermath,” according to a statement from her office.

She urged victims of sexual violence who are still alive to “break your silence”. At the end of her visit she was widely quoted by media saying “things happened here that I have never seen before.”

At a  public session of the British Parliament last week, Israeli first responders, police and forensics experts also provided detailed, first-hand testimony about the evidence they had gathered of the rape and genital mutilation of female victims of the October 7 massacre, testimony widely reported in the international media.  

Waxman Bakshi, who also testified at the parliamentary session, well recalls the grisly accounts she heard there:  “First responders described how they saw the bodies of women who had been shot in the back and also had semen on them, females stripped from the waist down….  I mean, clear, obvious signs of of rape.. and testimony from the Nova music festival by women and men who saw gang rapes and mutilation.”

Amongst the hostage families visiting Geneva, several familiy members also expressed fears that their daughters, nieces and cousins are similarly at risk. But so far, only “partial testimony” has been gathered, about the hostage victims, Waxman Bakshi said. 

“I had to translate [into English] for a released hostage her story,” she told Health Policy Watch. “she spoke of girls telling her in the tunnels that they had been raped at gunpoint, that they were touched, that they would be taken advantage of in moments like going to the bathroom or when they would cry. 

“But I also know that this is super, very, very sensitive. And so what released hostages have told the authorities is not necessarily what they’re saying in the media.  And I don’t blame these women. It’s hard enough for the victims of rape to come up and speak about it in general, let alone when an entire is waiting to hear if you were raped.

What we know is that these things happened on October 7. Whatever happened on October 7, can no longer be reversed,” Waxman Bakshi concluded. “But what we know is that we still have women there. These women are still at risk, they can still be saved.”

Despair and hope in the tunnels 

Shay Dickman with her yoga mats outside the experiential display of a Gaza “hostage tunnel” in Geneva, preparing for a yoga session in the name of 39 year-old Carmel Gat, her cousin being held hostage in Gaza.

Even as the delegation’s visit took place, hopeful reports last week that a new ceasefire and hostage exchange deal might be in the offing seemed to be fading against the backdrop of hardline statements by both Hamas and Israel’s government.

Dickmann refuses to give up hope. 

After emerging from the darkness of the mock hostage tunnel into the bright winter sunlight of Geneva’s Place des Nations, she unrolled a yoga mat that she carries with her on every mission on behalf of the hostages.     

Her next act of protest, she said, would be a yoga session on the plaza, in the name of Carmel, herself an avid practitioner who had just returned a few days before from a trip to India, before being taken hostage. 

Carmel Gat practicing yoga in India, just before returning to her family’s home in Kibbutz Be’eri, where she was taken hostage.

“Carmel, my cousin, apparently is doing yoga in captivity,” said Dickman. “For me, that’s not only a sign of life from her, to hear that she is doing that. It’s a sign that Carmel is choosing life. She has the power inside her to keep going, to keep her hopes up, to get others hopeful as well and take care of them. 

I hope that she keeps her spirits up.. I want to tell her ‘Carmel, we’re coming to get you.’ ”  

Image Credits: E. Fletcher/Health Policy Watch, E Fletcher/Health Policy Watch , Israeli Mission to the UN in Geneva , Family Roman-Gat.

COP10 on WHO Framework Convention Tobacco Control. President Zandile Dhlamini (Eswatini) during the opening ceremony

“Tobacco [is] the biggest public health threat the world has ever faced. […] Together we have made great progress. We have saved lives,” the World Health Organization’s (WHO) Director-General Dr Tedros Adhanom Ghebreyesus stated at the opening of the 10th Conference of the Parties (COP10) on the Framework Convention Tobacco Control (FCTC) in Panama on Monday. 

The biennial convention acts as a governing body to supervise FCTC implementation, and the 183 parties to the FCTC will meet first to discuss the next steps for tobacco control policies.

From 12-15 February, the third Meeting of the Parties (MOP3) will discuss progress on the special Protocol to Eliminate Illicit Trade in Tobacco Products.

Since the convention was adopted in 2005, there have been major improvements for tobacco regulation.

“Two decades ago, the idea of tobacco-free bars and restaurants was unthinkable, but now this has become the norm,” stated Jarbas Barbosa, director of the Pan American Health Organization.

The number of smokers worldwide is decreasing, both as a proportion of the adult population, from 33% in 2000 to only 22% presently, and in absolute numbers despite the population growth, said Dr Adriana Blanco Marquizo, the WHO FCTC’s Secretary, in her opening statement.

Marquizo outlined three key concerns for the meeting: FCTC’s  slow implementation, new nicotine and tobacco products gaining popularity and the industry’s continuous interference in countries’ tobacco control efforts.

Participants at the COP10 opening ceremony

One of the major concerns of participants is the growing popularity of emerging products, including heated tobacco products and e-cigarettes. 

 As the WHO has warned, the tobacco industry often markets these specifically to the young generation, using attractive flavours or cartoon characters as part of their design.

Industry lobbyists claim that e-cigarettes, or vapes, are a less harmful alternative to traditional cigarettes that help people to quit smoking. But the WHO contests this, arguing that they neither help people to quit smoking nor are harmless.

Tobacco industry produces “alternatives that are equally addictive” and provides misleading information about them, stressed Barbosa. Thus, regulating the emerging products is one of the main challenges for the meeting parties.

Meanwhile, big tobacco companies are up and running with their own campaign to discredit the convention, as the University of Bath research confirms.

In a leaked email published by The Guardian, Philip Morris International senior vice-president of external affairs Grégoire Verdeaux described the summit as “nothing short of a systematic, methodical, prohibitionist attack on smoke-free products”.

He also expressed his outrage at the fact that the industry was excluded from the talks.

But according to WHO, “there is a fundamental and irreconcilable conflict between the tobacco industry’s interests and public health policy interests”, while Marquizo describes them as an “industry that profits from suffering and death.”

Opening the convention, COP president Zandile Dhlamini commended “the commitment and passion we all have for […] developing solutions to continuously protect present and future generations from the devastating effects of tobacco”.

Image Credits: WHO/FCTC/Yuscar Duarte, WHO / FCTC / Yuscar Duarte.

Stella Kyriakides, the European Commissioner for Health and Food Safety, at the AU-EU meeting in Addis Ababa.

Europe’s Health Emergency Response Agency (HERA) has pledged €6 million to assist the  Africa Centre for Disease Control (ACDC) to scale up sequence-based disease surveillance and laboratory capacity on the continent.

This was announced by Stella Kyriakides, the European Commissioner for Health and Food Safety, at the start of a three-day meeting between the African Union and the European Union in Addis Ababa on Monday to address health and humanitarian issues.

Belgium’s development agency has also signed a memorandum of understanding with the ACDC aimed at strengthening Africa’s pandemic preparedness, said Caroline Gennez, Belgian Minister of Development Cooperation and Major Cities.

Belgium holds the EU presidency and one of its aims to accelerate equal access to health and strengthen the Africa-EU partnership on Global Health. 

To this end, Belgium is hosting a high-level event on health with the African Union on 20 March.

Africa CDC Deputy Director General Dr Ahmed Ouma welcomed the agreements, saying that they would improve global health security by “building [African] countries’ capacity to detect and respond to health emergencies”.

The agreements focus on three main issues, he added: supporting Africa CDC’s role as the continent’s health implementer, the growing resistance to antibiotics, and building the continent’s One Health capabilities. This is particularly crucial on a continent with a high level of zoonotic diseases.

Kyriakides said that “when it comes to health, there are no continents and borders”.

She added that Africa was a “key priority” for the EU.

Gennez said that the pandemic accord negotiations at World Health Organization (WHO) were a recognition that “all big challenges are global”.

“Team Europe supports the decentralisation of vaccine and medicine production,” added Gennez.

Meanwhile, Minata Samate Cessouma, the African Union’s Commissioner for Health, Humanitarian Affairs and Social Development, said that the meeting would also discuss cooperation on Africa’s humanitarian needs, especially in the Horn of Africa.

“Climate change is now starting to displace more people than conflicts now,” Cessouma noted.

Working Group on Amendments to the IHR (WGIHR) co-chairs Dr Ashley Bloomfield and Dr Abdullah Assiri, alongside WHO head of emergencies, Dr Mike Ryan, at the start of the seventh meeting.

With only 10 official negotiating days left, the Working Group on Amendments to the International Health Regulations (WGIHR) is under pressure to reach agreement on changes to the rules that govern global health emergencies.

The seventh WGIHR meeting which began on Monday officially kicked off the 2024 pandemic ‘season’ negotiations at the World Health Organization (WHO) in Geneva.

It’s a short, intense season though, with the grand finale for both the IHR amendments and the pandemic accord set for the May World Health Assembly.

As Eswatini pointed out, the WGIHR only has 10 official negotiating days left until May, and by Friday, this time will be halved. 

Addressing the equity-related gaps in health emergencies should be prioritised, stressed Eswatini, speaking for the 47 African member states and Egypt (part of WHO’s Eastern Mediterranean region).

Malaysia, representing the Equity Group (a cross section of over 30 countries), stressed that articles to “operationalise equity” – particularly Articles 13, 13A, 44 and 44A, alongside annexures 1 and 10  – need to be prioritised.

“It is important for the IHR amendments to enable us to better prepare for future pandemics and other health emergencies, and this can only be achieved through concrete provisions that effectively operationalise equity,” said Malaysia.

“Hence, we look forward to more concrete engagements and conclusive discussions on equity related provisions before we can agree on the full package of proposed amendments,” it added, appealing to the WGIHR Bureau co-ordinating the negotiations to “make every effort to facilitate the informal consultations as much as possible in order to make headway”.

Sincerity of developed countries?

Bangladesh appeals for reciprocity from developed countries.

Bangladesh, which had made a similar appeal at the last WGIHR meeting, was more forthright: “It is a fact that, in many cases, equity-related proposals have fallen apart despite the strong demand of a large number of countries.”

“Developing countries have sincerely engaged in all proposals submitted by the developed countries. Reciprocity to that is not a demand rather a cause that once motivated us to conceive the idea of amending IHR 2005,” said Bangladesh. 

“We are confident that the developed countries have the capacity to deliver on them and towards that we all need to demonstrate our real intent and commitment.”

Avoid ‘complexity’

Dr Mike Ryan, WHO head of health emergencies, appealed to negotiators to ensure that any amendments were clear and simple to enable efficient implementation.

Ryan summed up the IHR thus: “We protect each other and our communities by committing to provisions to make our borders safe, to make sure that we have good surveillance systems in place, that we manage information in a way that allows others to be alerted when there’s a problem, and  commit to helping others when they have a problem.”

“I would only ask you in what is already a very complicated instrument, and it is very difficult for the Secretariat to meet those provisions and carry out those provisions in an efficient way, not to bring complexity that results in inefficiency, despite the intent. 

“Sometimes in life, especially in an emergency situation, the more complex the action, the more likely it is to fail at a time of critical pressure.”

Malaysia appealed for measures to operationalise equity.

‘Optimism is high’

Despite the daunting week ahead, Dr Abdullah Assiri, the working group’s co-chair, said that “the optimism is high”. 

“We have had ample time to deliberate with our capitals and therefore we can take swift positions on the proposed text. We have several articles and annexes of which consensus could be reached in this meeting,” said Assiri.

Thanks to meetings with the Intergovernmental Negotiating Body (INB), which is developing the pandemic accord, there was also “more clarity on common issues”.

 “For example, you correctly believe that surveillance and the definitions of health alerts all the way to the pandemic definition are mainly IHR related issues. At the same time, you made it clear that equity and finance need to be addressed in both instruments,” said Assiri.

Collaboration, capacity building and financing

The WGIHR Bureau suggests that the meeting begins with text proposals relating to “collaboration, capacity building and financing”. 

These are the articles proposed by Malaysia (13,13 A ,44, 44A) as well as Annex one and a new Annex 10. 

The outbreak continuum – from issuing a public health alert up until the WHO Director General declares a Public Health Emergency of International Concern pandemic – (Articles 6, 7, 10, 11,12, 48 and 49), will be next. 

Then the meeting will address articles related to “governance, monitoring and oversight”, said Assiri. 

“Here we suggest that the proponents – African Group, European Union and the United States of America – work with the Bureau to develop updated text proposals which can be reviewed during the week.”

However, in response to concerns about time, Russia suggested that it might be necessary to implement the amendments in stages.

Misinformation

Dr Ashley Bloomfield, the other co-chair, raised the “well coordinated campaign to try and undermine this process and the INB process and indeed, to try to undermine the work of the WHO”. 

“It’s very important in our work that we provide confidence, both on the importance of the work, and the fact that it is a member state driven process and that the sovereignty of countries is not threatened by this process,” stressed Bloomfield.

“Rather, the sovereignty of each country can be enhanced by us all working collectively,” he added.

“We will be working hard to make sure there is a public profile for this work and that it does address the myths and disinformation that has been targeted at our process. I’m sure you’re aware of it. You’re probably facing your own battles back in your countries with those WHO wish to undermine the process and we must of course not let that happen. There is too much at stake.”

Raising its own concerns about misinformation, Japan proposed that the WGIHR releases an updated draft of the proposed amendments so the public could see that the process is member state driven.

The WGIHR will hold a public update on this week’s negotiations on Friday afternoon.

Healthworker administers polio vaccination in Pakistan’s sensitive northwestern region.

ISLAMABAD – As Pakistan heads towards general elections on Thursday, February 08, leaders of its polio programme are hoping that improved political stability and a more stable security situation could help make 2024 the year for final eradication of the crippling disease from the country.

Pakistan and Afghanistan, neighbouring countries sharing a porous border, are struggling to completely eradicate the wild poliovirus from their countries.

Experts predict that wild poliovirus could be eradicated globally within the next three years, if all goes well. What happens in Pakistan and Afghanistan are central, however, is central to making that happen.   

According to the Pakistan Polio Eradication Program, six wild poliovirus cases were reported in the country in 2023 – another six in Afghanistan. While several imported cases of wild poliovirus were also detected in Mozambique and Malawi in 2022, those were deemed to have been imported from Pakistan, and no further cases have been reported over the past 15 months. 

In Pakistan, no wild poliovirus cases have been confirmed so far in 2024 – putting the country on track for ending wild poliovirus soon, if not this year. 

First national anti-polio drive of 2024 was hit by militant attacks

Site of an attack by gunmen who shot and killed a polio programme coordinator in the Bajaur district of northwestern Pakistan, near the border with Afghanistan, on Jan. 19, 2024.

However, Pakistan’s first national anti-polio drive, which kicked off last month to immunize 44.3 million children, suffered a notable setback, with two militant attacks in the country’s turbulent northwestern region bordering Afghanistan within a space of just a few days.

As a result of these attacks, which occurred in the same region of the country, a senior health official coordinating anti-polio efforts and at least seven security personnel were killed.

Pakistan’s current caretaker government, as well as previous governments, have always expressed their resolve to provide security to polio campaigns.

However, the recruitment of police personnel providing teams with security, has remained a challenge in the ultra-conservative tribal region of the country – ever since a fake Hepatitis B vaccination campaign was carried out by the CIA in the Pakistan border region in order to obtain the DNA of Osama bin Laden and identify his location in hiding, finally leading to his assassination in 2011.

The country’s polio eradication program and its global partners, Rotary International, have welcomed Pakistan Law Enforcement Agencies’ (LEAs) role in supporting polio team security.  However, polio vaccinators and local political leaders  say that polio vaccination teams still need more support.  

More security still needed

Door-to-door campaigns, a critical part of Pakistan’s polio eradication strategy, are a challenge in districts rife with insecurity.

Shahzeb Malik, a polio vaccinator in the northwestern region of Khyber Pakhtunkhwa told  Health Policy Watch that security teams accompany the polio workers in anti-polio drives but there must be better operational coordination on both sides.

“Polio workers and police personnel have been targets of the militants in recent  years, so we need an improved version of the security with this polio program,” he said.

There is no doubt about the strong administrative resolve for ending the polio in the country, he asserted, even in remote regions of Pakistan like his own, he asserted. 

But this year’s  first polio campaign also coincided with election campaigns – a time in which health workers, including polio staff, are also supporting the set up of voting stations and other preparations for the big election day. 

Overcoming the ‘trust deficit’ amongst tribal leaders

The CIA’s operation against Bin Ladin left a lasting legacy for Pakistan’s polio program, resulting in an ongoing ‘trust deficit’ with regards to vaccination campaigns, Dr. Humayoun Mohmand, chairman of  Pakistan’s Senate Standing Committee on National Health Services, told Health Policy Watch. 

He expressed hopes, however, that a new government could begin to bridge the gaps, bringing great political stability and focusing on local solutions to a broad range of problems facing rural tribal communities.

“Absence of political stability and lack of coordination between federal and provincial governments does impact the polio program,” said Mohmand.

Hailing from the tribal region of Pakistan, himself, Dr. Humayoun emphasized the need to engage local ‘Jirga’, referring to local tribunals administered by mosques and Imams [religious leaders] in polio vaccination drives.

“We have to incentivize these institutions and provide financial assistance to include them in the fight against polio,” Mohmand stressed.

Rotary International plays a key role in polio eradication 

Administering a polio vaccine in a door-to-door campaign

Religious leaders, including Imams and Islamic scholars, can also play a vital role in reassuring hesitant parents within their communities about the safety and effectiveness of vaccinations, in line with Islamic principles, asserted Aziz Memon, the chair of Rotary’s International’s PolioPlus national Pakistani committee, in comments to Health Policy Watch

Rotary International has been a key player in the global campaign to eradicate polio, committing more than $2.7 billion over the decades to the effort through a funding partnership with the Bill & Melinda Gates Foundation,

In Pakistan, Rotary also supports ulema workshops to build community trust and confidence in vaccines, through the Gates-funded Global Polio Eradication Initiative (GPEI). In addition to engaging trusted religious and community leaders, GPEI partners provide communities with desired (complementary) health services alongside polio immunization.

“Challenges to polio eradication in Pakistan include politicization of the polio program and in some cases, vaccine refusals,” Memom observed. 

“The risk of international spread of poliovirus remains a Public Health Emergency of International Concern”, he added, referring to the longstanding WHO declaration of a global polio health emergency for the virus, which was reaffirmed in December 2023

“That’s why Pakistan is implementing and deploying tactics to strengthen essential immunization, better target high-risk areas, and integrate basic health services to complement polio immunization activities including leveraging the capacity of female health workers and religious leaders to build community trust and improve vaccine acceptance.

He said the polio programme prioritizes the safety of the healthcare and frontline workers, and works closely with local governments and authorities to protect these individuals.

“Specifically, the government of Pakistan provides security teams to accompany frontline workers during immunization activities,” said Aziz Memon.

GPEI in Pakistan has also been active in working with political leaders at the national, provincial, and district levels, including during this time of political transition, Memon addded.

“When a new government is established, that advocacy will continue to minimize the impact on the programme,” he predicted.

Insecurity leads to rushed campaigns or campaign postponement

Administering a polio vaccination

Pakistans polio programme has the full support of law-enforcement agencies, from the police to the army, that provide security cover to teams in each campaign, agreed Dr. Shehzad Baig national coordinator of Pakistan’s Polio Eradication Programme..

Even so, insecurity still contributes to “rushed campaigns or campaign postponement in security-compromised areas, which means we are unable to reach the children who need the vaccine the most,” he admitted.

Political instability has been a particular problem in the tribal areas of polio endemic southern districts, such as Khyber Pakthunkhwa, as well as in Pakistan’s northwestern region.  

The Programme also has built a “robust communications strategy in place across the country, including digital and on-ground social behavior change strategies, to build trust in communities,” Baig added. 

“In places where we see vaccine hesitancy and refusals for whichever reason, we enlist the help of local influencers, tribal elders, social workers, and religious leaders to engage with communities and increase the threat perception of polio,” he said.

Still, it remains difficult, if not entirely impossible, to conduct quality house-to-house campaigns in conflict-prone areas.

“In areas where some children are inaccessible to our teams, we implement a ring-fencing vaccination strategy to vaccinate people going in and out of the area to prevent the virus from spreading and give the population some protection from the virus,” he observed..

As for the impacts of political rhetoric and administrative re-shuffling during election season, Baig asserted that it had not really hindered vaccination efforts. 

“With the upcoming general elections, we have a full strategy in place for interaction and advocacy with the incoming government to ensure polio remains a priority,” said Baig.

“Even as the elections are near, all District Commissioners and health department staff supported throughout January 2024 the national immunization drive to ensure that we reach over 44 million children with the vaccine.” 

Image Credits: Pakistan Polio Eradication Program , VOA/Google Maps.

Modupe Famodun, 40, and her eight-year-old son, Tiolu, who lives with cerebral palsy.

In resource-restricted countries like Nigeria, parents of children with special needs, particularly mothers, bear the entire burden of care.

In an unexpected turn of events in early 2015, Modupe Famodun’s baby son was diagnosed with cerebral palsy.

A neurologist at the Federal Neuropsychiatry Hospital (FNPH) in Lagos in South-West Nigeria, had been strolling down the hospital corridor when an unusual, shrill cry pierced the air, immediately drawing her attention. Her instinct, sharpened by years of experience, led her to believe something was wrong.

 Upon inquiry, she found out that the crying child was Tiolu, Famodun’s then two-month-old son.

Filled with empathy for the young mother, the neurologist rallied a team within the hospital to conduct a series of laboratory tests for little Tiolu without charge.

 “What is cerebral palsy?” Famodun recalled asking the neurologist after she disclosed the test result. Cerebral palsy is the medical term for a group of disorders that affect balance, movement and muscle tone. And now her son, Tiolu, has been diagnosed with it.

Unable to come to terms with her son’s cerebral palsy diagnosis, Famodun repeated the test at the Lagos University Teaching Hospital (LUTH) two months later.

 She was desperate for a different outcome, but reality soon hit her. The result was no different from the first.

“This was the moment that brought me to tears because I was completely unprepared,” she said, her voice quivering as she fought her emotions.

In resource-restricted countries like Nigeria, parents of children with neurological disorders bear the entire burden of care. The impact is even more profound on mothers, who assume greater caregiving responsibilities.

A study conducted by Andrew Olagunju, a Nigerian psychiatrist and researcher, highlighted that the severity of the child’s disability can have a significant impact on the caregiver’s psychological well-being.

Emotional roller-coaster

In the months following her son’s diagnosis, Famodun would grapple with overwhelming anxiety as she contemplated the chances of her son ever living a normal life.

“I shut myself in and cried endlessly, hoping on God for a miracle,” she shared.

During the initial two months of her self-imposed isolation, she could barely bring herself to touch her son except when she needed to breastfeed him. Her husband took on all the duties.

“I was lost, totally lost,” she admitted, harbouring guilt for Tiolu’s condition and blaming herself for the events surrounding his early days.

Three days after Tiolu’s birth in 2014, Famodun suspected he had jaundice but a senior family member played down her fears. By the fifth day, when she finally sought medical help, it was already too late. In fact, he was presumed dead at the hospital. Eventually, the doctor resuscitated him but hinted at possible brain damage.

The medical confirmation of Tiolu’s cerebral palsy brought back those painful moments from 2014. She wrestled with regrets, guilt, and sorrow all at once, and it felt like her pain had no end. “I felt responsible for his suffering,” she said.

Famodun had initially hoped that her son would reach developmental milestones like walking, sitting, and talking, just like other children. However, she later learned from the doctor at LUTH that his development is unpredictable.

After Famodun’s supervisor at work learned about her situation, she granted her a year’s paid leave. This period allowed her sufficient time to recover from the emotional turmoil and adapt to her new role as a caregiver.

Her husband helped her through this life transition. “My husband offered counsel on several occasions and taught me how to efficiently manage my time, ensuring I could care for Tiolu before leaving for work,” she shared.

However, as she grew stronger in her role, her husband’s support waned. Four years later, he lost his contract job and eventually stopped returning home, choosing instead to live in the church for the next few months.

Feeling abandoned, Famodun slipped back into depression. She was now left alone to cater for the family’s well-being and shoulder Tiolu’s medical expenses.

Cost of care

Stella Igbokwe, a young mother whose only child was diagnosed with hydrocephalus — a condition in which excess cerebrospinal fluid builds up within the fluid-containing cavities of the brain — disclosed that she spends more money on her child’s care than she earns from selling fruit on the street.

“I spend over 50,000 naira ($37) every month on my son, Stanley. Registering him at Flora’s Trust Centre [a formal caregiving home] costs 20,000 naira ($14.7). The rest covers his medications, diapers, special diet and transportation. It is not easy,” she lamented.

In his research, Olagunju noted that in countries with limited resources, caregivers not only play a crucial role in the well-being of these children but often bear the primary responsibility for their treatment.

He attributes this to the unequal distribution of healthcare resources and limited health insurance coverage in these countries, leading to high out-of-pocket expenses for families.

It is estimated that public spending on support for people with disabilities (PWD) in low- and middle-income countries is below 0.3% of GDP. This is in stark contrast to high-income countries, where allocations for such support can exceed 1.4% of GDP.

Weak policies

According to Article 28 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol, which Nigeria ratified in 2010, effective social protection policies must take into account the additional costs faced by people with disabilities from low-income backgrounds.

In a report by the Office of the High Commissioner for Human Rights (OHCHR), eight Nigerian states were recognized for adopting regional disability laws. However, only five of these states allocated funds in their 2023 annual budget for the implementation of these laws, with Lagos State, the focus of this report, being one of them.

Remarkably, the budget for the Lagos State Disability Fund, aimed at enforcing the 2011 Lagos State Special People’s Law (LSSPL) to safeguard the rights of people with disabilities in the state, was greater than the combined budgets of the other four states.

The LSSPL fails to make provisions for financial assistance for children with disabilities and their families living in poverty, as recommended in the CRPD, but it faces criticism mostly for its poor implementation.

In early 2023, allegations of fund misappropriation were made against the general manager of the Lagos State Office of Disability Affairs (LASODA), the agency charged with implementing the LSSPL and managing its funds.

Following the accusation, the then general manager of LASODA, Dare Dairo, failed to respond to the allegations, simply saying that his office lacked the authority to withhold funds. He also noted that the agency was working with local government officials to enhance healthcare access for PWDs. However, access to free healthcare remains an unfulfilled promise for people with disabilities in the state, as out-of-pocket expenses for treatment remain the norm.

Expressing her discontent with the governing board, Tobiloba Ajayi, a lawyer living with cerebral palsy who contributed to the development of the LSSPL, said, “The law is comprehensive and beautifully written. We put in all the work to get the law passed, and yet, implementation has continued to be lacking.”

Some respite for caregivers – but at a cost

The privately owned Flora’s Trust Centre was established by Chikaodili Ugochukwu, a 55-year-old mother with a teenage son living with cerebral palsy. Her decision was influenced by the challenges she faced in finding a suitable caregiving home for her son close to their place of residence in Lagos.

In Nigeria, the number of formal caregiving homes is limited and unevenly distributed. Quite a number of the well-maintained ones are owned by individuals or non-governmental organisations (NGOs).

 Mothers interviewed for this report have expressed disappointment with government-owned caregiving homes, citing poor living conditions and low staff-to-child ratios, leading them to dismiss these homes as viable options.

Stella Igbokwe, 27, visits her son at Flora’s Trust Centre.

When Ugochukwu began the centre in 2018, it was exclusively dedicated to children living with cerebral palsy, but it was impossible for her to turn her back on mothers raising children with other neurological disorders. “Disability management is a herculean task,” she said.

Ugochukwu felt obligated to take in Igbokwe’s son to ease the burden on the young mother, who does not receive support from her partner.

“Once I drop him off at the centre, I feel a sense of relief, knowing I can focus on my work. My primary concern now is ensuring that I have enough money to pay for another month,” Igbokwe said. 

An unsustainable practice

Although there have been instances where children were admitted to the caregiving home  without paying the enrollment fee, Ugochukwu soon found that this practice was not sustainable.

 “We are non-profit, but in the meantime, we require parents to pay subsidised fees to cover our operational expenses until we can attract more sponsors,” she explained.

Ugochukwu revealed that it costs no less than 800,000 naira ($590) to keep the centre running. This covers their overhead costs and enables them to employ the services of professionals to offer physiotherapy, speech and occupational therapy for the children.

On the centre’s lemon-coloured wall, a whiteboard displayed the names of enrolled children. There were 11 names, although only five children were present at the time of this report.

Drug and food charts for some of the children enrolled at the centre.

Among the absentees was Ifedayo*, a 12-year-old girl living with cerebral palsy. Her mother, Ayomide*, a 49-year-old single parent, had not renewed tuition for that month because Ifedayo’s older brother was on holiday and would be supporting her at home.

When her husband was alive, Ayomide never considered caregiving centres because he effectively supported her at home, even at some point becoming Ifedayo’s primary caregiver.

“After my husband passed away, I was really under pressure,” said Ayomide, who became the sole breadwinner of the family.

 She said that it was impossible to make ends meet while providing round-the-clock care for her daughter. “I was struggling to meet deadlines at work, and not all my clients were understanding.”

 She stumbled upon Flora’s Trust Centre by chance and decided to enrol Ifedayo after learning about the centre’s weekly boarding services. This meant parents could drop off their children on Monday mornings and pick them up at the end of the week.

Even after she found that this would cost her 60,000 naira ($44.2)—significantly higher than the centre’s non-boarding services—she still went ahead with her decision.

“It’s not that I could afford the money, but commuting daily to the centre would cost almost double the amount,” she explained, referring to the mobility challenges she experiences when going out with her daughter, whose condition confines her to a wheelchair.

False hope

At first, Ayomide thought that diligently following her daughter’s treatment plan would help her recover. “But there seems to be no end,” she said.

Like those who came before her, she would realise that caring for children with special needs is a journey, not a sprint. 

“Many of these children will rely on their parents throughout their lives,” said Lillian Akuma, a physiotherapist at the Child and Adolescent Centre of the FNPH. She has been working with children and adolescents living with neurological disorders for 12 years now.

“What I often observe is that many caregivers are unprepared for the transition from childhood to adolescence and eventually adulthood,” she continued. She noted that health professionals who provide care for these children were partly to blame.

Lillian Akuma during a physiotherapy session.

“In a bid to comfort parents, we give them the impression that it’s just a phase the child will outgrow. But that’s not always the case,” she explained.

These parents, clinging to this prognosis, become anxious to witness their children reach important milestones. “They hope to see their children stand, but after two years, if the children haven’t even achieved neck control, the parents become depressed,” she said.

“I have conducted research on caregiver’s burden and discovered that when they are in this mental state, they no longer put in their all to support their children,” Akuma said.

 “When caregivers fail to fulfil their roles effectively, we can’t expect positive treatment outcomes for the children,” she concluded.

A safe place

An empty hallway in the Child and Adolescent Centre. The building has brightly coloured interior walls and adorned with vivid drawings to appeal to the children.

The Child and Adolescent Centre, an annexe of the FNPH, where Famodun’s son was first diagnosed, is one of the few facilities offering medications for children with neurological disorders.

However, it holds significance far beyond being just a healthcare institution for many of these mothers.

“The Child and Adolescent Centre is like a family house for me,” said Wemimo Akinwunmi, a 39-year-old mother of a son living with cerebral palsy. Her son, Ayomikun, had earned the endearing nickname “Ambode” from fellow parents at the centre, which was a nod to a former governor of Lagos State whose first name was also Akinwunmi.

Akinwunmi recounted when she ran out of money for her son’s medication and the other parents rallied to provide the outstanding amount. On days when she had enough, she returned the favour to other parents in need.

The centre has gained immense popularity for two key reasons: first, its specialised treatment for children with neurological disorders, and second, as a safe space where their parents feel genuinely understood.

Wemimo Akinwunmi, 39, and her son, 7, Ayomikun, going out for a walk. She considers the Child and Adolescent Centre, of the Federal Neuropsychiatry Hospital “a family house.”

Famodun disclosed that the centre played an important role in restoring her confidence. ‘In 2016, I was transferred to the pharmacy section of the Children and Adolescent Center, where I met numerous mothers who shared similar experiences. I learned so much from them,” she said. She also benefitted from the return of her husband, whom she described as supportive.

 These days, when parents visit the clinic, the nurses frequently turn to Famodun to address their concerns. “I went from being quiet to becoming an activist for my son,” she said, smiling proudly.

*Chikaodili Ugochukwu lost her teenage son some months after this interview was conducted.

*Some names have been changed to protect their identities.

*Naira exchange rates used were based on the time of report

This story was produced with the support of the Women Radio Centre and the MacArthur Foundation.

Image Credits: Samuel Okoro., Samuel Okoro, Kate Okorie.